A Little Bit Of Courage

Hello Friends,

Jul 19, 2014 1:05 PM
Hello Friends,

I know firsthand, from writing about our journey so publicly, that it’s not always easy to press that ENTER button… There have been many times I’ve hesitated and wondered if I should share so much, so candidly. Yet, I felt in being vulnerable and opening a window to our journey, others might share in the lessons, or learn from our story without actually having to live it. I also feel that if we were all a bit more honest and open with each other about our lives (the good, bad and ugly), we would all be much more connected. — and that wouldn’t suck!

Recently, my husband decided to take his own personal story and share it in a public way. I know the courage it took for him to do so, and I am extremely proud of him for it.

Here is his story. Please watch, share and act if you are so moved.

Thank you. Oh, and Lulu just had her 4-month post treatment checkup and is doing wonderfully! We are grateful every single day :-D.


A.l.l. Of Us


Miracle Marathon video and letter



Hello Friends,

As we reach the last few hours of Miracle Marathon, I wanted to share a tv interview we did with the kids, where their words were eloquent and insightful beyond their years (link above). I am also sharing a letter wrote in the middle of the night last night for Miracle Marathon. Co-host Carole from The Dave and Carol show just read it beautifully, through tears, on the WKLH 96.5. I don’t know how she and Dave do what they do, but what an impact they are making. Here is the letter:

Hello Dave & Carol,


I woke up with a burning desire to say more, to do more … even after our on-air interview. So here I am, writing to you at 3:45 a.m!


We talked a lot about how wonderful Children’s Hospital is, but we left out an important and unique element; the caregivers themselves. One can read the statistics and know they will receive state-of-the art medical care at Children’s, but it is the staff there that will remain in your hearts forever.


Having spent so much time at the hospital over Lulu’s 2.5 year treatment for leukemia, we became very close with many of our caregivers like Dr. Towers, Dr. Roberts, Dr. Kelly, and Dr. C. and the nurses there, who live with you in the trenches every day, like Bonnie, Linda, Lauren, Leann, Sal, Kim, Deb, Becki and so many others … Not only do they care for you as they would their own family, they LOVE YOUR CHILD … even at the risk to their own hearts. It’s not an easy business working on the H.O.T. unit, or in the MACC Clinic, where tragically, not all of your patients make it. We spent enough time there to lose friends, amazing children like Bo Johnson who has forever touched Lulu’s and our heart, Jack Bartosz, Corey Batz, and most recently, Superman Sam. It takes an exceptional person to work with these kids and families EVERY SINGLE DAY with love, and Children’s has an abundance of exceptional caregivers.


There were many times when we didn’t know if Lulu would make it. Children’s Hospital literally saved her life on at least 3 occasions. First, when she was diagnosed with leukemia and placed on a 2.5 year intense protocol. The second time was when her appendix burst during treatment, adding major complications, surgeries and months in the H.O.T. Unit, and the third, when she had an allergic reaction to a chemotherapy drug (peg-asparaginase) and went into anaphylactic shock. We never forget how lucky we are to have our beautiful Lulu with us, so full of life, light and love.


We are humbled by our experience at Children’s Hospital and will never stop fighting for all the children that have lost their battle with cancer. We try to live and teach our children that if you have the ability to help someone, you have the obligation to do so. Having sympathy and empathy in hearing someone’s story simply isn’t enough. We must ACT. It is only through action that change is made. So PLEASE, those of you listening today, take action by picking up the phone, or making a donation online to Children’s Hospital. You can save a child’s life by taking action right now, today.


With love and gratitude,


a.l.l of us


If you wish to donate, please call 414-337-9554 or visit http://fox6now.com/2014/05/22/find-out-how-you-can-help-childrens-hospital-of-wisconsin/


Paying it Forward


Hello Friends!

I wanted to share a very special blog entry I co-wrote with my 11-year old son for Children’s Hospital of Wisconsin (link below).  Lulu has become the ‘face’ of the Miracle Marathon for 2014, which is an amazing 2-day on-air radiothon by WKLH Dave & Carol that raises $1.3 million for our very own Children’s Hospital of Wisconsin!  We will be on-air May 22nd at about 8:15 if you’d like to listen.  You can donate in Lulu’s name if you wish, or for any of the other little warriors still being treated at Children’s.  Their goal is to raise $1.5 million this year, and we are so pleased to be such a big part of this effort.  Lulu’s face has been plastered all over the hospital, websites, mailers, etc.  She just celebrated her 2-month ALL CLEAR check-up and I’m thrilled to report she has been feeling fantastic, full of life and happiness!!!  We are so very grateful for the treatment and care we received at Children’s Hospital and feel honored to be able to pay forward some of our good fortune.  

Please take a minute to read the blog entry through this link, and you can also watch the video of our story at the top of the page.  


With love and happiness,

a.l.l. of us

Full Circle


(pic above, car ride to the Hospital for Lulu’s surgery)

Full Circle

http://chw.wistia.com/medias/1ebjs89ldn (Bell Ringing Full version- Professional Video from Children’s Hospital)

Today was a big day:  Lulu went back to school.  It’s a strange feeling and it’s still sinking in.  I feel on the verge of tears.  I’d hoped to feel elated and bouncing off the walls, but I mostly feel … gosh, I can’t even find the words to describe it.  I think it will take a while to process the 2.5 years living in Crazy Cancerland to moving back into a new normal.

Lulu’s surgery went well, but was more complicated than predicted.  The surgeon called us into THE ROOM” that you never want to go into, which brought back a flood of emotion and memories of her multiple shredded appendix-on-heavy-chemo surgeries.  Our zen-master 6-foot tall & beautiful female doc calmly informed us that the port removal was easy, but they had found 2 instead of one hernia, both of which were larger than anticipated and interlaced with omentum (fat the leaks through hernias).  Lulu’s recovery proved that point true, as she struggled to move at all the first two days and didn’t stand or walk until the 3rd day.  But our Little Tough bounced back quickly after that, reminding us of the incredible healing powers children have.

While at the hospital, I felt so lucky to have seen two nurses that have been a special part of our journey.  First Leann — who was there in the darkest times when we were in ICU — a girl I know I would have over for dinner, walks and java on the front porch if we lived closer to each other.  She called me while we were in the waiting room, bubbling with excitement to have us on her docket in the recovery room.  I showed her the long version of the bell-ringing video (Link included at the top of this entry), and then Becki, another fave nurse, bounded over to give us hugs.  I replayed the video for her, Lulu still asleep between us, and she couldn’t stop the tears from continuing to roll down her instantly wet cheeks.  It made me count our blessings once more, that we’ve had such amazing care at Children’s Hospital, that so many nurses and doctors care so much for each of their patients, and have really become a part of our lives.  That was clear form the turnout at the bell-ringing too, seeing so many caregivers take the time to attend, watching them cast their eyes down as they shed tears of relief and joy for their special patient as the bell rang out.

We realized how powerful this moment must be for them, as well as for us.  As many times as we’ve been to that hospital and clinic, I only remember ONE other bell-ringing ceremony.  That’s a shame.  I’m sure the doctors and nurses don’t experience this powerful full-circle moment enough either, especially those that work on the H.O.T. unit, ICU, or other wings of the hospital.  I’m so grateful to have this special video to share with them, and others, to signify this success story and the journey and the hope that it inspires.

As I write this, I think the word that best describes how I’m feeling right now is humbled.  — So grateful to be one of the lucky ones, hoping and praying it holds, and never forgetting all the other children we’ve met along the way that we will continue to fight for.  Thank you all for being a part of this journey, holding us up when we’ve needed it, walking beside us when we’ve needed a hand to hold, catching us when we’ve fallen.  We’ve learned so much about love, the power of a community and how much difference ONE person … or one little girl … can make.

Thank you.

a.l.l. of us

Lulu Rings The Bell!!!


Hello Dear Friends,

At last, the day finally came and our little warrior princess got to ring THE BELL!
I wish i had more energy to write about the incredible day yesterday, but if a picture is worth a thousand words, this video is worth a million!!!

Please keep us in your thoughts as Lulu goes in for her last surgery Tuesday.

A.l.l. Of Us

Nearing the Finish Line


Hello Friends,

I just had to post again as I vacillate between giddy delight and emotional overwhelm. It feels like we’re all just holding our breath … unbelieving that it’s really almost here: MARCH 6TH, and MARCH 11th: Lulu’s last day of chemo and last surgery.

It’s been a special week. I was honored to have my children’s book The What If Book featured with our story for a fundraiser for Ridin’ For Research. It was SO powerful. The pages of the book served as a backdrop while video of our story was woven between moving narration. I was really choking back the ugly cry as pictures of Lulu came onto the two ginormous screens; reliving the story in bold face as it played out. We went on stage and passed out rainbow bracelets to everyone there which read: “Never stop wondering WHAT IF?” I can’t thank presenter Kim enough for her hard work on this event, her attention to detail and the research and respect she paid to our story, as well as Bo Johnson’s. Carol, the illustrator, and I did a book signing afterword and Lulu also signed each and every book, adding in a special bit of art with her signature. It was adorable and she stole the show as usual :-). I’m very proud to have been a part of it, and the event raised over $70,000 for cancer research!!!


Max kicked some major bootay at Forensics this week, finishing his first season with 5 blue ribbons in solo comedy, culminating in the Power Rounds where he went up against 7th and 8th graders to walk away with the overall first place trophy! I continue to be amazed with how well he’s done despite his sister’s illness. He’s quietly and deeply affected by it, while managing to be there to make her laugh when she needs it, and still an imperfect enough big brother to remind us all to appreciate some normalcy.

Lulu is literally checking off the days on her calendar, also giddy and sensitive. She’s vomited the last 2 days in a row from her chemo, and feels ‘floppy’ but also extremely excited to give the nasty chemo dragon a permanent goodbye. It’s a lot to digest for all of us. We’ve been running into the wind for 2.5 years, heads down, completely focused. The thought of that force of air being cut off and calm seems almost unfathomable. I expect a tidal wave of emotion may come from behind us to fill that stillness …


with love,

a.l.l. of us

Counting Down!

Image 2

One week from today is Lulu’s LAST dose of chemo! 5 days after will be her port removal and hernia surgery. WOW, It’s really almost here. I wish I could report an uneventful week, but never a dull moment ‘round here …

Jimmy got a horrific flu, which was passed on to Max. I’ve never seen either of them that sick before. And why is it that boys can’t seem to hit any sort of receptacle, be it potty training or vomiting? He erupted like a volcano, all over himself and me, in every nook and cranny of the bathroom floors, walls and grout, while I looked over at the view of the pristine toilet. We spent the night on the bathroom floor together – after I cleaned up the first round and he got his rhythm and aim going! He got to be a downright expert, getting lots of practice every 15-30 minutes for over 8 hours.

While that was bad, we knew we had to protect Lu from getting it. Since I was likely exposed and Jimmy was recovering, I stayed home with M. This is one of those times I wish we had an adopt-a-family program. With nowhere else to take her, off she went to a hotel with Daddy for 2 nights. They had a great time though, and Lulu swam like a fish in the pool as often as possible. 4 days later today, Max is back to school, albeit a waifier version of himself. Seriously, the two skinny guys get the flu and here I sit with my extra lbs of what I’m calling ‘stress weight’? What’s the saying, I’m one stomach flu away from my goal weight? Ok, not really worth it… the gym awaits.

The good news is that Lulu is doing really well, and fingers crossed she will not get this flu so she can get through this last leg of treatment and surgery smoothly!!! She just LOVES homeschool. Her favorite subjects are Recess where she plays outside in the snow, Math – on a great app for addition and subtraction, Reading – her favorite book series Ivy and Bean, and P.E. which consists of chasing mommy around the house and scaring each other into screams by flying out from around any hidden corner. Oh, and Lulu told me Jimmy got to ‘sub’ the other day while I was working. I had to chuckle when she told me about her favorite new class called OPEN GYM. Apparently, this was free time, where you can choose whatever you’d like to do; Lulu made art and Daddy took a nap.

Cheers to 3pm March 6th. Keep your ears open for that bell, if you listen closely, you just might be able to hear it!


a.l.l. of us

Quick update



Hello Friends,

Just a quick update to let you know all went well with the Immunoglobulin transfusion!  Besides a horrific tantrum that came out of nowhere (caused by combo of bad reaction to benadryl and steroids), she got through it beautifully.  Praying for no long-term effects.   She’s bounced back remarkably, as only a child can, and the fevers have subsided for now.  She was even able to take a few minutes to play in the snow Valentine’s Day.  Notice the heart around her?  I feel it is a good sign of things to come, as well as a symbol of the love that surrounds her by all of you, our friends and family.  

We are going to keep her in a bubble, or bubble-wrap, or flea-dip her in antibacterial gel for the next 3 weeks, but  WE CAN DO THIS!!! 

Much love, 

a.l.l. of us

So Close and Yet So Far


We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder.  Since I always like to get the bad news out of the way first, I’ll start with that.  It’s been an eventful week with lil Lulu.  We ended up in ER again, this time with 103.7 fever, headache, vomiting and wicked-scary cough (the biggest concern with leukemia patients since this could turn into pneumonia).  Our good friends took Max so Jimmy and I could both go in with her.  You know the drill by now: total panic and desperate crying from Lulu when she finds out we’re going to E.R., the usual tests, prodding, poking, fluids etc. … We ease the pain and much as we can, and ever since the infamous 4-nurse and 6-missed port pokes, we ask for someone to come down from H.O.T. to access her difficult port.  We were SO lucky to see our dear Linda come down.  This is the nurse that Lulu once told me if she could have another mommy, she would want it to be Linda.  It was like seeing family when she came and helped tremendously.  Hours later, her counts came back high enough that we could leave for that day.

Day 2, fever returned.  I took her in so Jimmy could stay home to protect Max from seeing his sister go through it all.  Repeat of above plus heightened anxiety and, luckily, another great nurse from H.O.T.  She was additionally given Tamiflu and antibiotics.  Her fever finally seemed to break.  We left at 11pm only to return to clinic the next morning.  This time for surgery consult (for hernia and port removal), chemo, bloodwork, and nose swabs.  That’s 3 days in a row of port-poking and rollercoaster anxiety.  I must tell you though, that as petrified and Lulu has been (literally shaking and crying with fear at times), she always pulls it together and finds what we call her ‘brave spot’ to get through the actual procedures.  She truly amazes me and I continue to be impressed by her sheer will and tenacity.  She even seemed to be bouncing back and so much better that afternoon.  We also had an unexpected visit from Bo’s mom Annika, which brightened our day immensely!  She and her crew were donating a $10,000 check to the MACC clinic from The Go Bo Foundation.  We just love them and the work they are doing.


Image 1

(Elephant to color on from Annika)

Long story short-ish, we’ve found out she has Human Metapneumonia virus and, as the name would indicate, one that can turn into pneumonia.  We also found out that her IGG (immunoglobulin – important component of the immune system) is low, which may be why she’s been getting sick more often and severely.  She will need and infusion of this, which can be risky.  Allergic reaction is possible (we NEVUH want to go through that again) and because the product is harvested from over 10,000 blood donors there is risk of contracting serious viruses.  Of course, we’ve consulted with the nurses and doctors, read the information and feel this is a necessary risk.  She will receive the infusion over 4-8 hours tomorrow.   Please keep her in your thoughts.  We are so close to the finish line!

Which brings me to the good news that’s really great news: March 6th will be her VERY LAST DOSE OF CHEMO!!!!!!!!!  That’s right, a mere 3 weeks away!  She will have a highly anticipated day at Children’s where she will ring the bell, signaling the end of her treatment.   We’ve heard just a few others ring it, and it’s the best sound you’ll ever hear.  Both Jimmy and I get choked up just thinking about it.  She is scheduled to have her hernia surgery and port removal on March 11th, barring any illness or low blood counts.  The light – no, the rainbow— at the end of the tunnel is brightening, just have to move through these last storm clouds.  We have decided to homeschool her until she is finished with therapy.  Her doctors and teachers concurred, knowing there is strep and flu prevalent in the school right now.

The first year off therapy she will have monthly blood work and checkups.  Year 2 will be bi-monthly, I’m foggy on the rest, but I believe years 3-4 will be every three months, year 4 will be every four months, and year five will be every 6 months.  After year 5 we use the word CURED.  Have you ever seen a prettier word?

I’ll try to keep updating you in shorter spurts over the next few weeks.  Thank you for your continued support, love and good juju for lulu — and a.l.l. of us.

Out Like a Lion …


(pic above: our 2-year holiday card)

Out like a Lion …

2013 left us with a microcosm of the ups and downs of the year wrapped up in one day. Looking back, it seems fitting … but I’m glad that it’s come to a close. New Year’s Eve was our 13th wedding anniversary. We’d hoped to celebrate, starting the day off in an extremely promising way by closing on a house in the neighborhood and school district we’ve been looking in for years. My friend took the kiddos so we could steal away for a romantic brunch, but both Jimmy and I were preoccupied and restless. Lulu had seemed a bit under the weather, and our beloved kitty Gizmo was recently diagnosed with diabetes. We finished eating and raced home, hoping to catch a little more time together. Fate had other plans.

Gizzy, ‘Drool-monster’, ‘The big Schmoe’, was lying on the floor stiff and almost lifeless. We raced him to the vet, but his breathing was shallow and he was barely moving. He did perk up enough to give me a couple of sweet nuzzles which I will cherish. You see … I was his special person (and don’t tell Sugar, but he was my favorite kitty). We left him with the vet after getting a call that Lulu had a fever. Off to the hospital with both kids we went. We were so happy to see Lulu’s usual nurse Bonnie who is bestowed with magical skills, I swear. We underwent the usual barrage of port access, blood draws, IV fluids, meds, and the dreaded nose swabs. Lulu was really anxious since we’d had quite a few unexpected trips in recently. She was having a difficult time shaking a flu she’d gotten, and it kept rearing its ugly head in the form of fevers. We kept quiet about our kitty, so as not to upset her any further. After only a few hours we got the green light to go home, with permission to give Tylenol for 24 hours but bring her back if she fevered after that. It was exhausting for everyone, as it always is and we were so relieved to get home. The dreaded call soon came in from the vet; Giz had left us for the great fields of catnip beyond. It seems almost silly to be so upset over a little furry friend, but that cat was a part of our family for almost 16 years. It hit us all SO much harder than we expected. Happy New Year. We waited until the next day to tell the kids and we all cried openly together, huddled on the family sofa, telling stories of this character whom had touched our lives more than we knew. It turned into an unexpectedly bonding moment for us, so we took that from it.


During this time we had water damage to our almost former house after a pipe burst in the attic, literally raining down over the floors below. I really thought I might lose it! I just kept saying “no, NO, NONONONO!!!!”, like machine-gun fire. We also had a tub overflow and damage the soon-to-be new house flooring within the week. It seemed we were on a Lemony Snicket-driven course, accompanied by the bitter cold of the winter. Interestingly, it didn’t take us down. I didn’t lose my mind (really, I swear!). Oh, it had its moments, but there were a few gentle reminders that came in to help put things in perspective for what they were; just a series of unfortunate events. A friend (whose granddaughter had also been through leukemia) gave me some pivotal advice when I told him how hard it was every time we had to go back to ER. He said it’s difficult because it’s a reminder of just HOW FAR YOU’VE COME. What a gift those words were.

We have indeed come so far, and it’s really not that bad. Our little friend Kate and her family have weathered a much harder and unrelenting course through her A.L.L. , and she wrote on her Caring Bridge about a blog entry I’d made in 2011 that had helped her through a trying time. That too, reminded me of how much better things are now … and what a blessing our family, friends, and life are. We were recently taped for a video segment on a new cancer drug, and asked how things were going. Without hesitating, Jimmy said “Great!” and meant it. After a small beat, I thought … he’s right. Things are great. We are all ‘healthy’ and Lulu is nearing the end of her treatment. We are weathering the storms and have seen many rainbows between the clouds.

Spring will be a fresh start for all of us. We hope and pray it comes in like a lamb!

Love, a.l.l. of us

Special Sibling Surprise to Share


Hello Friends,

I was recently doing hair and makeup on a photo shoot with a model who is dating Packer tight-end Ryan Taylor. She overheard someone asking me about my daughter, who is currently being treated for leukemia. I told her a bit about Lulu, age 7, who is 3 months from finishing a tough 2.5 year chemotherapy course. I also told her about my 10-year-old son, who has been amazing through it all. She generously offered to send him something from Ryan. I knew that would mean so much to him since he is a HUGE Packer fan. 

It’s more difficult than we realize, for the siblings of those going through cancer. The sick child is given so much time, attention, and showered with gifts. Often, the well sibling is overlooked… Our son has been nothing but gracious through it all, never showing a sign of jealousy or crying out for attention. Making his sister laugh when she needed it, and hugging her at just the right times. 

Today, a box arrived in the mail for him. Inside it was not only a signed photo from Ryan Taylor AND Randall Cobb, but a number 12 signed jersey from AARON RODGERS !!! 

I’m so grateful to be able to share this beautiful Christmas story with you, to thank Abbie for her thoughtfulness and Ryan and the Packers for their generosity. Lulu continues to be up and down with nausea, vomiting and pain, but she is incredible; a force to be reckoned with.   We are still pushing through to March 6th, 2014 when she will take her LAST dose of chemo!  

Happy Holidays, 

T. Marie and a.l.l. of us

A Little Rain


Chemo, the double-headed dragon, continues to both protect and punish our little girl.  Lulu’s been sick more often and severely as of recent, vomiting and experiencing periodic, but intense pain in various parts of her body.  We assume it is the accumulation of toxicity caused by over 2 years of prolonged chemotherapy.  I mean, there must be a limit to how much a little 43 pound-er can process, right?

It’s difficult to take on many levels since we’ve been living in (relative) blissful denial over the last few months.  We try to live our lives ‘as if’ there is no cancer … giving the kids and ourselves as much normalcy as possible.  However, an unexpected and traumatizing trip to ER can snap one back to reality in an instant.

The fever came on at about 1 a.m., fast and furious.  It started at 101.5, and quickly jumped to over 103 accompanied by a throbbing headache.  I took Lulu to ER at Children’s and Jimmy stayed home so Max could sleep.  I wish I could tell you it was a quick and easy visit, but it was far to the contrary…  As we checked in, she was shivering and crying, very uncomfortable from the fever.  The first two nurses came in to access her port (appliance that is installed beneath the skin that connects to a vein for administering medication and drawing blood).  ER isn’t very familiar with ports, and Lulu’s is especially tiny and challenging.  After the first nurse poked her twice and failed, I insisted we get someone else.  The second nurse came in and I tried to stay calm for Lulu who was now reaching hysteria, so that she would still have faith in the caregivers.  Two more pokes with the one-inch spike and no luck.  This is unprecedented.  Lulu is now completely losing it, screaming through tears at the top of her lungs “THIS PLACE IS EEEEVVVIIIIIIL!!!!  IT”S EEEEVVVIIIILL!!!!!” begging and pleading with me to take her home.  This almost struck me funny, seeming like something out of the Exorcist.  We don’t use the word evil around the house regularly, and it seemed out of character for her to use it. I firmly asked the nurse to get someone form the H.O.T. unit, and ask for our friend Sal if he’s working.  He was.  I was relieved, but I also knew that H.O.T. doesn’t do a TON of ports either.  Clinic is where the expert ‘pokers’ are, and they only work 9-5.  I knew Sal would at least calm Lulu down, which he did the moment he entered the room.  He and his teacher wife actually babysat for our kids over the summer, and he had been our first night nurse ever.  To say we have a special relationship with him is an understatement.

Unfortunately, he too was unsuccessful.  I later learned from his wife that he had frozen after Lulu winced.  He had come to feel differently about this little girl than other patients and that touches us deeply.  The next nurse that came in for the 6th or 7th poke and seemed to have gotten it in securely, but it wasn’t drawing.  It seemed it was now plugged on top of everything else.  At least the damned thing was in and Lulu could stop being a human pincushion!  Now we would have to wait for the TPN (think liquid Drano for ports) to work its magic.  Sal hung out with us for a little while longer and Lulu really calmed down.  He left and Lulu vomited 5 times.  Ugh.

It was nearing 5 a.m. and after two rounds of TPN, the port finally drew and they could get Lu’s blood counts.  We had to be sure she had enough white blood cells to mount an immune response to the flu, a danger for these kids.  Her counts were high, which was a good sign.  Jimmy and Max arrived at 6 a.m. so I could leave for a job an hour away.  I hadn’t had time to get a replacement, and frankly needed this job since I had been taking time off more regularly to be with the kids.  Lulu’s fever dropped after finally getting Tylenol.  She was stable, calm and sleeping at last.

They all had a long next day as Lulu was transferred to the MACC Clinic where she was administered IV chemo and had to endure the dreaded nose swabs to test for flu.  These are very painful and scary for her, but apparently big brother was a rock-star, comforting her throughout, hugging her through the pain and making her laugh in between events.  He didn’t even complain a bit about the 5a.m. wakeup to go to the hospital.  We are so proud of him.  Now, how can we get him to change the litter box without complaining?!?

She was released the next afternoon with Tamiflu and other meds.  She seemed to bounce back so quickly!  But then the fever rose to 104.1.  Ugh.  We were told we could give her Tylenol for 24 hours, so we stayed on top of that and the fever broke again. This went on for another day and finally finished its course.

She’s continues to be up and down from the effects of the chemo.  When she’s up, you’d never know she wasn’t like every other kid in the world and then some; an amazing creative force.  When she’s down, it scares the hell out of me and is not a gentle reminder of what’s continuing to be present in our lives.  Seeing her in pain and lethargic is … well, you can imagine.  She has been taking oxycodone (you read that right) and anti-nausea medications to help combat these effects.  We can’t give her anything that might mask a fever like Advil or Tylenol.

But, we know we are still the lucky ones.  During this new holiday season, we know far too many families who no longer have their little ones to eat turkey dinner with, to decorate the tree with, to buy gifts for … and still more who are in the hospital enduring their own treatments.  So, I continue to write to you all, about the good the bad and the fuggly of cancer, to raise awareness and hope that this holiday season you might think of one of those kids as your own, and donate in your own way your time, energy or money to help fight this disease.


A.L.L. of US



I’ve been self-indulgent. And needed it. I’m sitting in a hotel, overlooking a beautiful view where the trees surround and seem to hug the lake within. The colors are so rich and vibrant they fill my senses in a way no vitamin could, but my body desperately needed. It’s been two full days of time. Alone. I’ve barely left my room. I watched the entire season of Orange is the New Black. That’s 13 episodes friends! Laazaaay and loving it. I had lots of plans to write, read, and catch up with my life. But I listened to my body that clearly said REST!!!  I should add that I’ve been very sick for a couple of weeks now, and that’s no good for anyone, especially Lulu.

The summer left Jimmy and I exhausted, and I think the almost 2-year battle with Lulu’s cancer is still catching up. It doesn’t feel right. She should be done by now, and have her port removed. She’s been doing so well… Yet, it will rear its ugly head again tomorrow when I take her in for her monthly treatment with spinal tap, chemo, and steroids … 6-ish more months and counting.

There was no time for even a small vacation this summer with Jimmy working on The Surface movie, gone physically and/or mentally for eight weeks. It was awesome seeing him in his glory though, as he commanded quiet respect from the cast and crew, working diligently, intensely and uncomplainingly to create the best possible outcome. I did makeup a few days on the set, and was glad to be able to see it all in action. There was a tangible excitement, especially from the local crew, enjoying this process despite its great demands. One of my personal highlights was working with Mimi Rogers; a true gem. She was so open about her life, even sharing pictures of her beautiful children with me. She’s gorgeous too, even as the ‘earthy’ character she plays.

While Jimmy was engulfed, I held down the fort, hanging with the kids and their summer activities, giving daily meds, and working. I’ve become very unhealthily attached to my phone, working between/among the bustle of life. This realization became clear when a friend told me she knows she loves that she can text me at any time and I’ll always respond immediately. Hmmm, that might be a compliment, but I know I must wean. Between my beauty editor job, freelance work and my book, that phone has become an additional appendage (Did I mention The What if Book was published? I’ll make a big announcement in my next entry, just act surprised, ok?)! [Note to self: work on marketing skills]

I have one more hour of alone time, so I’m going to sign off now. I’ve really missed writing to you, and writing in general. I know this entry itself was a bit self-indulgent, but I think everyone should allow a little time for self-care … I hope this gives you an excuse to take some for yourself.


T.Marie and a.l.l. of us




(Lulu & Mrs. B)

Hello Friends,

Wow, it’s been almost a month since I’ve written. You’ll see why after you read this entry …

Much like the weather in the Midwest this year, our lives have been full of rainbows, storms, sunshine and rain … sometimes all in one day!

Ours began full of hope, as Lulu was set to ‘graduate’ from Kindergarten. She was SO excited, and had been chattering on and on about the program all week. She was going to sing choreographed songs with her class, and give a little speech along with a few other chosen students. She practiced her two lines diligently, and had them down pat before the big day.

Proud as punch, she was the last and tiniest to march down the aisle, chest held high, with laser-like focus and broad grin. The program was cute beyond words, especially the dance-moves! I must admit, I used to think Kindergarten graduation was kind of a joke … really, we need to graduate K5? This year, however, there was cause for celebration, pomp and circumstance. Lulu missed almost all of K4 last year, having spent most of it in the hospital. This year she missed 45 days of K5, yet graduated with a perfect report card and took home the most coveted trophy; the Eagle Award. This award is given to the child in each class who demonstrates the best spirit and behavior all year. – No mean feat while on daily chemo and monthly steroids!!!

I’ve never seen Lulu so proud of herself, holding her trophy and her teacher who has become part of our extended family. It was the perfect distraction after what had been a horrible day. My husband’s father was scheduled to move into a hospital 5 blocks from us when he passed away graduation morning. Jimmy’s mother was visiting us when she got the news, and I recognized the awful sounds emanating from her room as the phone call came in. She had known Mike since she was 15. Jimmy was on his way back from an out-of-town job, and was devastated. I think the whole family was in shock, and the impact of Grandpa Mike’s death was felt more deeply than any of us would have predicted.

Somehow, Jimmy sat down at his computer, and over the next few days wrote the most thoughtful, respectful and historical eulogy I’ve ever heard. He read it aloud through sobs and tears, but each word was heard and felt by all present. I’ve always had a lot of respect for my husband, but his words, and grace surrounding this event raised the bar. He even arranged and led a Harley caravan to all his father’s favorite haunts. The funeral concluded with full military honors and a 21-gun salute and formal flag ceremony; well-deserved after fighting in Vietnam, a war that effected Mike and his family ever after.


Lulu spoke of death with an understanding that only one who’s lived so close to it can. She asked if Grandpa was up in heaven with Bo now, and was content my soft yes. She spoke of my mother, whom she’d never met but feels a connection with. She’s often talked about building a time-machine when she grows up, and the first thing she is going to do is bring back my mom, and Bo. Now Grandpa too.


We are all getting back into our summer routines, Lulu and Max in camps off and on, Jimmy and I hard at work. I’ve gotten so used to giving her oral chemo that I can tell the bottles apart by sound alone: Methotrexate is a high-pitched light sound like tic-tacs, 6MP has a duller, lower sound, and Bactrim is low but has more of an echo when shaken. I’ve only broken down once recently, when I had to wake her to give her pills, and one hung from her lip as she slept. I wondered what am I doing to this poor baby girl? But it must be done.

She’s tolerating things extremely well, only occasionally nauseous and enjoying the summer quite like a regular kid (full head of hair and all!). We are counting down the days to March 2014 when we can ring the bell at Children’s, meaning she is cured and finished. There will likely be more unpredictable weather along the way, but we’ve found out our family is remarkably resilient. Thank you all for being a part of our umbrella.


a.l.l. of us

As the World Turns


I almost have to laugh … there conyinue to be so many highs and lows, our lives playing out like a soap opera; filled with glamour, drama, tragedy and triumph.

Shortly after my Make-A-Wish blog entry posted, I was contacted by the Foundation. Someone had shared it with the board of directors and President of Make-A-Wish. Lulu was made the featured wish child, and they used part of the entry and pictures on their site. I soon received another call asking if I would be comfortable speaking at a fundraiser at the yacht club (I told you, GLAMA!). Of course I lied and said yes, knowing I would be very UNcomfortable beforehand, but fine once I hit the stage. Jimmy and the kids have also gotten used to these events, and I suggested we all go up together.

Lulu was unexpectedly crabby that day, and I got a phone call from her teacher letting me know Lulu was really tired and a little warm. I picked her up immediately, so grateful to be working at a nearby c’office. I got her home, laid her on the couch and wondered what we would do about the speech that evening. She had been very excited about the event and I had been throwing her a few random questions throughout the week, in preparation for her part. She perked up and was determined to participate, grabbing her rainbow piñata to bring along … somehow grasping exactly what was expected from her.

Jimmy and I volleyed the highlights of the wish trip. The kids stole the show as usual, Max with his old-soul eloquence and charm, speaking with his hands in the most natural way. Lulu chimed in, sharing excitedly her dolphin encounter, and telling the crowd that she loved Hawaii so much that it felt like she went home. We received a warm standing ovation, and felt so grateful to be able to give back to such a wonderful organization.


Lulu ended up with a fever that night, unfortunately over that magical 101 degree mark, meaning we had to go to the hospital. This would mark the beginning of more unexpected trips to Children’s, as Lulu battled the recurring flu, and multiple ear infections. The flu is much more serious and harder to treat with kids on chemo since their immune systems are compromised. She’s been on two rounds of strong antibiotics and two rounds of Tamiflu, but her fevers have continued to return.


Of course, Max got the flu too and I was scheduled for two jobs in NYC, a few days apart. To make matters worse, Jimmy’s dad had an emergency. I’m going to give you a cringe alert here, so skip this paragraph if you’re squeamish. After a routine procedure, he pulled out his own catheter accidentally. YEEEOUCH!!! He went septic and was rushed to the hospital and placed in ICU. It was touch and go for a few days, and the doc said if Jimmy’s sister hadn’t gotten him in immediately, he would not have made it.

I felt helpless in NYC, and it was strange to be the one who was working while Jimmy was dealing with the crises. My dad had happened to be coming through town heading north from Florida, and helped out. I was grateful to be able to bring home some bacon, and it was easier than I would have thought to be distracted by work. Lulu had a reprieve while I was gone, making it more palatable to be away. I was also with one of my favorite crews, people that have become my friends over the years. Lulu had generously given me her favorite bunny to ‘keep me company’ and we all had a blast taking pictures with Purple Bunny.





I got to see a friend in a Broadway show and was able to meet a couple of college buddies for a drink. One offered me free tickets to another show the next night, and I learned my college was having a reunion while I was there! I couldn’t believe my luck! That was, until … I got the flu. O. M. G. I got SO sick (cringe alert 2). I threw up about 10 times throughout the day, each time sneaking off to a (public, ugh) bathroom, and popping gum in my mouth to continue working. It was awful! My model could not have been sweeter about it. I was so grateful I had an assistant on set, and I would have her watch things as I would disappear to ‘take care of business’ throughout the day. There would be no reunion or show for me, no dinners or shopping, but I was still grateful to be there.


The studio had a great view of Freedom Tower and on my last day there, the spire was placed atop the building. What an inspiring symbol of resilience, determination and strength. A perfect reminder that it’s not how many times you get knocked down, it’s how many times you get back up.

I flew back home as Jimmy’s dad ended up back in ICU with breathing problems. I spent Saturday night in the ER with Lulu, who had 104 degree fever (she has bounced back once again, and was back in school yesterday). Jimmy is frantically catching up with a huge edit, and in pre-pro for a major film he’s working on this summer. We have been asked to be the featured family in Make-A-Wish’s Annual campaign. The What If Book will be published soon, proceeds going to the Go Bo Foundation, and our Love for Lulu fund. Oh, and our house has been turned upside down as Jimmy turns our attic into a home office and we get the carpets cleaned!

So, it’s best to laugh at the craziness, and only occasionally break down. We are rolling with the punches, appreciating the highs and getting through the lows, seemingly stronger and prepared by last year, which was spent in an even more dramatic fashion.

And so you have it: These are the days of our lives …


a.l.l. of us

Ten Thousand Tiny Things


Hello Friends,

As a light departure from my usual posts, I’m sharing a little poem inspired by my recent walk into Lulu’s room:

Ten Thousand Tiny Things

The overwhelm is palpable,

They’re scattered on the floor

Forming hills and valleys

Flowing out the door.

A golden wig traps teeny hangers,

a sword and dolly’s shoe.

They must belong to something

… If I only had a clue.

Volumes of artwork, colored pens

My head is beyond rattled.

Jewels and glitter scattered so far

Our cat is now bedazzled.

I sit crossed legged, overcome

As I decide its fate;

A bulldozer, a wrecking crew

Start with a garden rake?

A place for all and all in place

A phrase not near and dear …

For this little girl need say goodbye

to at least one thing per year!

But here we are, inundated

Inside her rainbow room.

There’s no escaping minute particles

Now lit up by the moon.

So we will live amongst the clutter of

Ten Thousand Tiny Things

Until the day our little girl

Gives to it some wings.


T. Marie

Make-A-Wish Hawaii – Chasing Rainbows


I think most of us play it too safe. There’s so much fear around standing out, being different or not being cool (gasp!). We live in a world mostly void of color. This is something I’ve been giving more thought to recently as I had been letting my own enthusiasm bubble over. For so long, I’ve been feeling scared, sad, depressed, worried about Lulu and her health. As I prepared for our trip to Hawaii I described it to the Make-a-Wish director as packing madly and anticipating wildly. She responded with a huge grin, writing how much she loved that description and image. – and it was a whirlwind, as packing can be with kids. You have to throw in everything but the kitchen sink while squeezing in as much work as possible before taking off!

As we scuttled through the airport, I noticed people lighting up and grinning at us, some laughing out loud as they passed by. One man even took a picture of us. You see … Lulu isn’t a gray/beige sorta gal. She shows up to the airport with a pink polka-dot suitcase, wearing bedazzled tennis shoes, purple dress and rainbow lei! She rides on the back of her spotted case, while Jimmy pulls her like a caddy with a built-in passenger. She is a stunningly bright contrast to the desaturated surroundings … her energy spilling out in giggled staccato. She is contagious, and can instantly change the disposition of those she encounters.

A limo picked us up at 4 a.m. to begin the long trek (I know, so fancy!). The flight was long, but not as painful as we had anticipated. Two flights, 11 hours in the air, and 14 hours total travel time. But what greeted us at the airport was simply astonishing: There it was … a rainbow ON TOP of the airport! I’ve never seen one so close to the ground before, but there it was for Lulu, to welcome her to Hawaii and fill her spirit. I wish I had videotaped her reaction, but you can imagine the overabundant delight, joy-babble and jumping that took place in seat D14!

We got to our rental car and headed off to the hotel, seeing no less than 7 more rainbows before we arrived!!! It was unbelievable. Her wish had come true already. Jimmy and I have been to Hawaii a few times before, and never seen anything like this. The rainbows were so close to the ground, so close to us, it literally looked like we could reach out the car window and touch them! Lulu was busting at this point, her shrill giggles reaching epic proportions as her bounding grew into full-on bronco bucks.


The hotel was right in the heart of Waikiki, with 4 full-sized beds in one room (yeah, not so sexy). It had a wonderful view of both the ocean and the volcano, much to Max’s delight since he has a ‘thing’ for volcanoes. We crashed pretty hard that night and got up bright and early the next morning to start exploring. There was so much crammed into our stay that I’ll just hit some of the extra-special highlights for you.

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Team Make-A-Wish planned 3 excursions for us and the first was a glass-bottom boat tour. It was a great novelty for the kids. But the most special part of it was meeting the other family who was with us. We were sharing some friendly banter when I looked down and saw 3 familiar buttons on their kids’ shirts. I blurted out “Are you on a trip through Make-A-Wish too?” They were, and their 9-year-old boy Hunter had also been diagnosed with a.l.l. What are the chances … seriously?!? They were such a lovely family, and Hunter reminded me so much of Max in the way he spoke and carried himself. I know they would be instant friends. I got a few moments alone with his mom back at the hotel and soon into the conversation, her eyes welled up with tears. I wrapped her up in a warm hug, sharing something only two moms with kids with cancer can know. Those of you who are parents know you enter a sort-of ‘parent club’ after you have children, having an innate knowing about parenting’s trials and tribulations that you share even with strangers. When you are in the ‘cancer club’ (a club you never hope to belong to) that understanding is magnified a thousand fold. To passers-by, we looked like two friends who hadn’t seen each other in a while, but beneath our chic sunglasses we shared pain and sorrow at a deep level. Our paths didn’t cross as much as we would have hoped, but I know we will keep in touch with that special family.



We spent most of our time at beaches outside of the hub-bub, driving up the coast to the North Shore where things were more peaceful. We swam with the dolphins at The Cove, and Lulu had a special job feeding and tickling the massive, slippery-soft and gentle creature. Jimmy and I loved it just as much as the kids did. What a special animal!



The highlight of the whole trip, however, was the Luau. I wouldn’t have expected that, but things just lined up for a special evening. The bus ride out was waylaid by traffic, which ended up being a blessing in disguise since fussy Lulu needed a nap baaaadly. She peacefully slept in my lap the whole way, accompanied by the beautiful sunlight that streamed through the windows of the humming bus.

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When we arrived, we were greeted by dancers and given flower leis and tropical punch. The temperature was perfect as we headed over to the flower-making table, where Lulu donned a princess headband filled with yellow flowers, made only for the most special females.


There were art activities and canoe rides and drinks. Although, I almost didn’t get my drink when I arrived without I.D. I guess that tropical air really is magical because I had to do quite a song and dance show to get mine, including showing my 10-year-old son to the bartender to convince her I was legal! That’s a compliment at this point, and it was really nice to feel a lil fresh and pretty again, since I caretaking generally does not include this notion …

There was a loud clanging of a bell, signaling us to gather together to watch some hula dancing and check out the suckling pig, pulled out of the ground (EEEEW!!!) for us to observe and give thanks to before chowing down on it. There was a wonderful show with singing and dancing from talented and scantily clothed beautiful people. Lulu insisted she wanted to go up to learn the hula on stage, so when the time came, she ran up, but dragged me with her after a sudden attack of shyness. She was very serious and focused front and center, the breeze in her whispy blonde hair echoing the swaying of her hips. Max and Jimmy got a huge kick out of seeing their girls up there, shaking what our mama’s gave us!


We left the next day, having seen about 20 rainbows in all! Jimmy, being the great dad that he is, sought out a special prism so that Lulu could actually catch a rainbow to bring back with her! She reached her arms out to the rainbow with open belief as she captured its bright colors. She placed it in a jar, eyes wild with glee.

The trip was really magical for all of us, and more needed than we realized. Jimmy and I have been feeling like we’ve been walking against the wind for a long time, trying to keep focused and determined, forgetting how exhausting this trek has been, and continues to be. Hawaii gave us time to sit in some silence … time to reflect. There were no deadlines, no bills, no housework, and no hospital visits. Our bodies truly let down, probably for the first time since November 7, 2011.


We’re still having a very difficult time transitioning back into reality, craving more sun, more fun, but not able to take it. Needing precious time together as a couple … things that are robbed of the whole family by cancer. But I’m happy to be writing about this trip now, as a wonderful reminder of those feelings. I hope we can all keep adding a little more color to our lives, chasing rainbows with Lulu wherever we may be, and under whatever circumstance.

Thank you Make-A-Wish, for making our special little girl’s dream come true, and giving us a vacation we never would have taken now. You are an amazing organization, and we are very blessed to have experienced your generosity!


a.l.l. of us



Standing in the sun

It’s like standing in the sun, feeling the healing warmth of it, when someone grabs you by the back of the neck and throws you into a meat locker. But now this place has become familiar. You’ve started to count on being there from time to time. You’ve stashed a parka, some snacks and a book in the back. You know this place and you know you’ll get out. Suddenly, you’re back in the sun, blissful again, a little giddy. You have a secret knowing; this won’t last forever either, but you rejoice in it fully while you’re here, and ask no more of it.

Upon our return from Palm Springs, we headed directly into a spinal tap with intrathecal chemo for Lulu, IV chemo, and the rest of the usual monthly torture. It’s always difficult to shift gears from bliss to this, but we’ve become very familiar with it. Lulu still has a hard time with many aspects of the procedures, but she is light years ahead of where she used to be. Her coping skills improving, her understanding growing … which is good and bad, as she has become more vocal about it: “Mama, why did I get in this awful mess to begin with?” “I HAAATE LEUKEMIA!!!” “I HAAATE taking these pills every day!” And my very least favorite: “WHY did I get leukemia?” I can explain almost all the questions except that one. I wish I had an answer.

Life has been so great lately that I almost forget we are still in this crazy cancer world. The reminders pop up though. When I give her chemo every single night. When I see a picture of her before treatment. When I recently read a touching story Sarah, a little girl from her school, wrote about her. But the lows are not as low as they used to be, and the highs feel higher. I’ve been continuing to take in and feel all the blessings that have been coming our way, and there are many: Lulu is doing well overall, going to school more consistently, learning to read. The What if Book is getting some buzz and likely published soon, as well as another big what if I’ll tell you about if it happens. Then there’s the Make a wish trip to Hawaii. I have an editorial that will be published internationally. Jimmy’s indie film in an international film festival nominated for 3 awards, Hawaii. Max landed a role at a professional children’s theater. We continue to feel loved and supported by our friends and community in so many ways. Hmm, have I mentioned Hawaii?

Lulu had her Make-a-Wish party last week, and we surprised her with it. I’ve included some pics below. I had gotten the rough draft of the speech from Sarah on the way to the party, which somehow set the tone. Her assignment was to give a speech about someone who had inspired her. She is 11 years old in 6th grade. Please read:

Lulu, a 6-year old girl, has fought many battles and continues to do so everyday. Lulu attends my school. Last school year on November 7, 2011, just days before her 5th birthday, she was diagnosed with A.L.L., acute lymphoblastic leukemia. In an instant, Lulu and her family’s lives changed forever. The journey Lulu and her family have been on has taught them many lessons. These are lessons that Lulu can teach us.

Since her diagnosis, she has spent days, weeks and months at Children’s Hospital of Wisconsin. Lulu has endured chemotherapy, its side effects and a burst appendix. Lulu is now in remission and is going through months of maintenance chemotherapy. Her mom T, her dad Jimmy and her brother Max have played a big role in Lucia’s fight against leukemia. Lulu’s mom has maintained a blog to provide family and friends with the latest updates. The blog has connected all those touched by Lulu’s amazing story.

I’d like to share a few examples of her courage and wisdom. One night in the hospital, when her liquids were restricted for medical reasons, Lulu was very thirsty and kept asking her mom for water. After not getting any, Lulu shouted: “My tummy is a desert, and there are animals there! And it’s hot and dry and they’re gonna die if they don’t get some water! ALL THE ANIMALS!!!” Then after her two sips of water, Lulu with a knowing smile said: “The desert is now a garden”.

Lulu’s mom has described their journey as a roller coaster or marathon. One day Lulu described their journey this way to her mom by saying: “I know Mama, storm, rainbow, storm, rainbow”… while drawing an invisible rainbow in the air with her finger.

Lulu continues to share her wisdom with her family and with all of us. One time telling her mom: “Mama, just because we can’t see something doesn’t mean it’s not real. We can’t see air or the wind, and that’s real. We can’t see God, but that’s real too.”

On another day, her mom is talking to her and tells her how proud she is of her and that she is going to grow up to be a strong, wise and beautiful woman. She looked at her mom with big green eyes and says, “So, I’ll be just like you, Mama.” A greater compliment was never given.

Lulu has met many extraordinary families battling cancer while she was at Children’s Hospital. Lulu wanted to help them and had the idea of starting a lemonade stand to raise money for Children’s Hospital and cancer research. With two lemonade stands last summer, she raised over $2,300. I was fortunate to go to Lulu’s house and donate money to the lemonade stand. I got to see Lulu. We talked and played in the sandbox that day. I could see that Lucia was getting better every day.

Our school has been with Lulu on this journey, too. For the last two years, we held a Pennies for Patients drive to raise money for the Leukemia Society, raising over $3,000 in Lucia’s honor.

Last year, Lulu was in K4 for two months prior to her diagnosis. She wasn’t able to return to school last year but did visit them in May. Her mom tells the story: When we entered the classroom, a hush fell over the room. The kids were instructed not to touch Lucia to avoid exposing her to germs. Lulu was beyond excited, bouncing up and down. Gingerly, the little ones approached. One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”. The kids were curious, but completely respectful. Happily, Lulu has returned to school this year joining the K5 class.

Lulu is an extraordinary person and her story is worth telling to the world. I hope someday to be wise and courageous like Lulu and her family.

What a reminder of how much our little one has gone through. How much we have all gone through… We went to the party and Lulu was bubbling over with excitement … and if she can revel in these moments after everything she’s been through, shouldn’t we all?


a.l.l. of us

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Jazz Hands


(pic from a.m. rehearsal)

“Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand – and melting like a snowflake. Let us use it before it is too late.” – Marie Beynon Ray

Life has been opening up again. Personally, I feel like a canary that’s been let out of her cage. Hope is now blossoming into full-on optimism. Although we have 13 more months of treatment, I think we are all starting to live in a new way; unapologetically and unabashedly … squeezing the joy out of every plausible moment. This is what can happen when you almost lose life, and witness loss. There is a renewed appreciation for all things good, whether big or small.

We had an incredible experience last week, when the four of us appeared as guest speakers at a convention in Palm Springs. We added a few days to the beginning of the trip to spend much needed time together as a family. The warmth and sunshine were like happy-juice to us! The resort was everything our lives have not been: perfect, lush, accessible, relaxing, and comfortable. – A soft place to land after a hard day, or in this case, a hard year. We hung out together, swam, walked, played, relaxed, and had some actual downtime. Jimmy and I even sneaked in some quality time (wink, wink!).
After a couple of days of this, it was time to think about why we were brought there: Jazz Pharmaceuticals. This is the company that had the alternative drug (Erwinase) for Lulu after she had a horrifying allergic reaction to PEG-Asparagenase (see excerpt from Caring Bridge below). They also took a pic of Lulu for their website, which we found out has served as a huge inspiration to their company in its entirety. We met the MC for the event, so full of kinetic energy and persona I thought he was gonna throw a jazz-hand out at any given moment! It was like looking directly into the sun. He was a Broadway actor and we both swore we had met before, perhaps from my performing days. He was at once comforting and startling, reminding us that we had a job to do there.

The four of us were featured at two sessions, the general session with a few hundred people, and a more intimate breakout session with about 50-60 people from the Oncology department. We had a rehearsal the day before, as well as one in the morning with the CEO Bruce, who would interview us on stage.IMG_2539 - Version 2

(pic from tech rehearsal)

The theme was ‘Bringing Value to Life’, and our story would kick start the multi-day event, to set the tone for the rest of the conference. What an honor. I won’t kid you, it was a bit nerve-wracking to speak on stage to that many people, but any nerves I felt in anticipation were totally gone by the time we went on. Jimmy and Max were cool as cucumbers too. Lulu got quite shy right before, and instead of her solo spot, we ended up all going on together. We entered the stage to a standing ovation, and surprised and delighted faces since most of the attendees hadn’t been told she/we would be there. Lulu was asked a few questions about her upcoming Make-a-Wish trip, and what rainbows meant to her, and was whisked off stage so we could get into the tougher subjects.

As those of you who have been reading this blog for a while know, I have a bittersweet relationship with medicine. Our whole family does. Pharmaceuticals are not on the short-list of aspirational adventures, but this company is truly different. The people we’ve met and come to know through Jazz have been consistently sincere, kind and enthusiastic about their work, a rare combination in any field, let-alone pharmacy! We’ve been in contact with multiple employees over these past few months, and developed a great report and, in some cases, a lasting friendship (you know who you are!).

After meeting CEO Bruce Cozadd, I understood why such a unique culture had been created. He shared with us a very personal story about his family, and I feel he has turned a tragedy into a journey, and that journey into a mission through his company. You can feel it in the way his employees speak of him: “Oh, just wait until you meet him, you’ll love him!” “He is so easy to be around, so compassionate”, “He’s such a great guy!” It went on and on and my B.S. detector didn’t go off once! He also admitted things aren’t perfect there (love that honesty) and it was clear he was genuinely concerned about it. After our interview with him, I could see how wonderfully down-to-earth he was, brilliant but humble, and deeply grounded. I also understood how he had developed such an amazing team; like attracts like.

Following the general session, we had a Q&A with the Oncology team. Many of whom have been touched by cancer personally and/or have battled it themselves. The questions were so pertinent, and insightful. Matt, a new friend with a permanent place in our hearts, surprised Jimmy by having the whole team wear Triumph motorcycle t-shirts. Jimmy has been wearing his in honor of Lulu, and Matt thoughtfully remembered this! That initiated the mood as the four of us were ushered on stage. Max continued to steal the show with his old-soul wisdom combined with his cute cheeks, and we all held it together fairly well until I started talking about what Lulu has learned though this. I talked about her generosity, the lemonade stands, and then went into her deepened empathy. She had recently spoken to me about Bo, our friend who lost his battle with cancer and deeply touched our lives. I choked and stopped. After what seemed like an eternity, I continued in this pathetic crying voice to share what Lulu told me last week: “Mama, when people die, they don’t go away forever, they just move into your head” She pointed to her heart on stage and I said “And your heart, right Lulu?” She nodded calmly; relieved I had understood her message. I’m convinced she is connected to the afterlife in a very different way than most of us are. Matt handed me a tissue, and we finished up with Jimmy telling the story of his first father-daughter dance that had happened right there the night before (and that Lulu had asked him!) Well, there wasn’t a dry eye in the house after those two stories.

Image 4

The attendees flocked around us after, regaling us with stories of their own, sharing lives they had lost and personal battles fought. I wished we could have talked to each one of them for the rest of the night. I felt so drawn to this work we were doing, so invigorated and energized from it. I long to do more.

So … life is really, really good right now for all of us, relatively speaking. Right now is all that matters. Lulu is sick infrequently, the OCD diminishing through our guidance, but more so through her own sheer will. I’m almost giddy with excitement and relishing every moment. Don’t be surprised if I shoot a jazz hand out your way the next time I see you …


a.l.l. of us


Caring Bridge entry from February 11, 2012


I write to you today excitedly, to share some great news: Lulu actually ATE yesterday!!! I’m not talking a mouse-like bite out of a cracker, or a single grape. She ate for REAL. The docs gave her an appetite stimulant last week, and it seems to be working. Yesterday, she woke up and told me she wanted pancakes! Of course, she wanted them from Beans and Barley, so I bundled up, shoveled off my car and headed out in the snowstorm. Baby wants pancakes, Baby gets pancakes! Apparently, I missed the breakfast menu by 15 minutes. Argh. I actually pulled out the sympathy card and explained the situation, that my daughter has cancer, hadn’t eaten in over 9 weeks, etc, but to no avail. I think the guy almost thought I was making it up! Dude, your pancakes are good, but not THAT good. So, I headed over to The Original Pancake House to get her second favorites. Success. She was so excited when I got back, and she ate almost 1/2 of one! Then she wanted banana yogurt, some water, her favorite rice puffs, then pretzels. I just could not believe my eyes! She kept it all down and asked for more at dinner. Some baby sweet potatoes and a chocolate cupcake brought over from a good friend. I didn’t care how much sugar, fat, whatever was in anything she ate, she was eating! More this a.m., with yogurt and a pancake. Granted, there were some issues in the middle of the night, but expected with the new stuff coming at her long-empty tummy. Please keep those prayers coming, if this keeps up, we an get her off IV and maybe even tube feeds in the future. :-)!

More good news; her temperament has been almost normal for the last few days. She has 6 days off chemo, and what a difference that makes. I’ve come to understand the multi-faceted and diverse effects drugs can have on children. Each child reacts uniquely, and chemical imbalances are nothing to sneeze at … When she’s in Sybill-mode, there is no amount of good parenting that will change the outcome of her behavior. I can no more control her moods than I can stop a truck from barreling down the highway with my outstretched hands. Again, it gives me empathy for parents with kids with ADHD, ADD, all the levels of autism that can’t be seen with the naked eye, etc. I won’t be so quick to judge that bratty child at the checkout counter, or their parents. Who knows what they’re dealing with, what medications they might be on, or what is going on in their home.

Speaking of medications, I bet you’re wondering about the tornado. Well, we couldn’t let a whole week go by without a little drama, could we! I jest, but it was actually terrifying. On Tuesdays clinic visit, Lulu was scheduled to get a couple of chemo drugs that we don’t give at home. One of which, can cause allergic reactions, so the nurse stays in the room with you. Lulu has gotten this drug a couple times before, so the nurse and I were chatting it up while the med started. Within seconds, things went very, very wrong. Lu started screaming that her tummy was burning and that she felt really sick and awful. A couple seconds later, her entire face turned dark red and she started vomiting profusely and screaming ” HELP ME! PLEEEAAASSE HELP ME!!!”. Her face swelled up, including her eyes, lips, then tongue and throat. Omg. I’m freaking inside but staying calm for her. 4 nurses and 2 doctors are in our room with the kind of calm that’s full of electricity, extreme focus and intention. Lulu glossed over and stopped responding. She went sheet-white. She got IV benadryl, epi-shot, steroids and 2 other drugs. Finally, she became stable and fell asleep. I sat back in my chair and the tears started rolling down my cheeks like a waterfall. Dammit! Can’t she just have a normal week of totally shittty cancer? She had only gotten .9 of 50 units of this med. Thank goodness it wasn’t more. Even after the shot, meds, she started swelling again. Her eyes were super puffy and her lips were full enough to qualify her for an audition for The Real Housewives of Milwaukee. So, more meds were given, and we were checked into the hospital for the night. Obviously, she can’t ever get this medicine again, so now we get the added bonus of going in 6 times instead of one. Thank goodness at least there is an alternative drug. It’s called Erwinase. She will get two shots simultaneously in each leg Mon, Wed, Fri for two weeks. The risks are less with the smaller, more frequent doses, but it will suck seeing her held down, screaming while she gets these “pokes”. Poor baby girl :-(.

Jimmy was on the plane headed to LA during all this fun, and had emailed me with a strong prediction that something was very wrong. At the time, we were having a great day, and I told him all was well. Wow. I hated to tell him how right he was. Worried sick, he carried on and did a fantastic job on his production. He amazes me. Maybe its best he missed it, as I hope to never see anything like that again, and have had nightmares the past few nights over it. Kids make you feel so vulnerable … your love for them is so deep and strong, the mere thought of anything going wrong can make you catch your breath.

A.L.L. ALL of us. Acute Lymphoblastic Leukemia. When one person in the family gets sick, the whole family gets sick, just in different ways. All are effected, even Lulu’s classmates, friends, relatives, ALL feel it’s effects, its burdens, its lessons, its inspiration. There are so many ways Lulu and A.L.L. are teaching us. I’m being more open and honest about this than I ever thought I’d be, feeling strongly drawn to write about it, and share with ALL, in hopes of something good coming out of the bad. I’m soaking up all the lessons for myself, including how to ask for help, taking care of myself, developing deeper empathy, helping others more, remembering true priorities, the list goes on and on. Now don’t go expecting me to be some perfect version of myself, no way Jose Eber! -but I know I will be a better version, and will realize more quickly when I mess up:-).

When I see the letters A.L.L. Now, I’m reframing them to stand for:




Good will come of this.

Things are getting better. We have 4.5 more months of hard-core treatment then 2 years of maintenance treatment, which is likely easier. I was recently introduced to another parent whose prognosis isn’t as good. His beautiful 10-year-old boy has brain cancer, and after almost a year-long battle, only has 2-4 months to live. I’d like to ask you to pray and send love to Josh Garcia and his family, as there is nothing harder on this earth than this. Also, please pray for Madi Drayna, who is recovering from a serious car accident. Her mother works at Lucia’s school.

I hope for more good reports on our end, and no more tornadoes. Just blue skies and lots and lots of rainbows!

What if … ?

sA9xZz - Version 2

Hello Friends,

I’m very excited to write to you today. I have a big announcement to make! I am finally sharing my children’s picture book “The What If Book”. I use the word finally, because this Little Book That Could has had quite a journey:

I started taking notes on a someday children’s book while my son was only 3. He inspired me with his relentless ponderings while in the back seat of my car. That age begins an important time for kids to start wondering about the world through their own eyes, and asking a lot of “what if” questions. My tiny notebook sat for a few years in the ‘someday projects’ category until 4 years ago. I sat down, put finger to keyboard and put my own twist on this theme to create The What if Book, a picture book for ages 3-7. It carries the reader through a modern, whimsical journey laced with a simple but powerful message; remember to dream.

Working in the industry of fashion photo shoots and film, I tend to meet a lot of amazing, creative and talented people. One of these people is Carol Curley, an art director I’ve had the privilege to work with for many years. I had seen a bit of Carol’s art here and there, and had the strong intuition that she would be able to bring my book to life in the modern, edgy way I had envisioned. Carol was very excited about the project and began sketching away. Over time, she used the book as a creative outlet, finishing the remainder of the illustrations by sheer will and want. I am SO in love with what she’s created, and feel so lucky to have her on this project.

We were thrilled with what we had accomplished; a finished, fully illustrated book! Lulu and Max loved the book, as did the kids and teachers at the schools and daycares where I tested it. I hit the ground running to find a publisher. I began with my close circle of friends to see who might have a connection. One of my best girlfriends Carrie looked at me, almost cross-eyed, and said, “em … JODI!”. Jodi was an author I had met years ago on a job in NYC and had connected with immediately. I had forgotten she was an author, and had a stronger memory of her wonderful energy. Duh, and she was a famous author. Her name is Jodi Lynn Anderson. I didn’t even know if she would remember me. I took a chance and sent the book to her. She responded that of course she remembered me, and that she really loved the book! I still can’t believe that. If you’ve never read a Jodi Anderson book, do yourself a favor and RUSH out to buy one. She writes in the young adult category, but her writing appeals to a broad range of ages. Tiger Lily is her latest masterpiece: http://www.harperteen.com/books/Tiger-Lily-Jodi-Lynn-Anderson/

Here is a link to her bio and other works: http://www.harperteen.com/author/microsite/about.aspx?authorid=22853

I can’t express how talented, generous, humble, full of wit and grace this woman is! After really getting to know her over the last couple of years, she really has become one of the most inspiring people in my life. I’m so proud to call her my friend. Now, I hope this won’t have people sending her their manuscripts! She did make it clear to me that she doesn’t usually help fledgling authors in this way, but something about my book appealed to her and I’m so grateful.

So … long story longer, Jodi gave me a quote for my query letter, and I sent it off. I received a few form letters back, a few nice responses that went along the lines of “We are only accepting one (or two) new picture books this year, but we really like your book!” I got one tough rejection letter and a co-publishing offer (at 50% profit, I turned it down). The children’s picture book category is the most difficult category to break into these days, especially if you’re not a celebrity: http://www.nytimes.com/2010/10/08/us/08picture.html?pagewanted=all&_r=0

I think I sent about 30-40 letters out and 10-15 copies before Lulu was diagnosed in Fall 2011. And that was the end of that. The book, with all the time and love that went into it, sat on the shelf to collect dust. I thought about the book from time to time, and how the meaning of the book was so perfect for kids like Lulu, who needed a reason to dream, a little something to give them hope and inspiration. I decided that if I ever got the book published, I would use the profits for something related to our ordeal. I decided if (no, WHEN!) the book is printed that the profits would be split between The Go Bo Foundation; in honor of our friends Annika and Bo, and the loving message they continue to put into the world, and Love 4 Lulu; to help with her medical bills and to give to Childhood Cancer Research and support.

Fast forward to last week. On a whim, I attended a seminar suggested by a friend on self-publishing through Kickstarter. I met some wonderful women there who were authors and illustrators. They were so encouraging regarding The What If Book, and one of the most impressive figures there took me aside after, and told me NOT TO GIVE UP. She thought I had something really great, and that it would be published.

Well, meeting those women lit a fire under me, and I started a Facebook page the next day. I was told it is very important to gain a following. The page got 325 likes the first day! Over 400 by day 2, and still growing at 500 on day 3 today! I hope you will ‘like’ and share this page as well by following the link here: http://www.facebook.com/whatifyouaskedwhatif?fref=ts I will post the book’s progress on that page often.

I must give a very special thanks to Carol Curley, who has generously decided to donate all her time and talents in illustrating this book to support our causes. She is a true gem of a human being and thank you doesn’t begin to cover it. But thank you Carol.

It seems like the little-book-that-could, was just waiting for the right time and reason to be introduced … and so it begins.

I must wrap up with a big thank you to Max and Lulu, who keep me believing, dreaming and asking … What if?

Highlights (mostly!)


Hello Friends!

Wow, it’s been a while since my last entry.  Thanks for your patience.  I’ll hit the highlights and lowlights to catch you up to speed.  Luckily, this will contain mostly the former!

We ended up spending the holidays in a much more quiet fashion than anticipated.  We were just too exhausted to make the 6+ hour trek to my BFF’s house.  Staying home turned out to be a fantastic choice.  We just needed some R&R after 2012!   As my grandmother used to say, my get-up and go, got-up and went…  We took the kids to Children’s Hospital Christmas Eve.  I know, you’re thinking: “Really?  You CHOSE to go to the hospital?”  We did.  We were so grateful not to be there, that we figured we’d bring some cheer to those who were, while teaching our kids to give back, and be grateful for all that we have (This does not mean that they were cured of their American spoiled-rottenness, but a step in the right direction nonetheless!).

We saw some of our favorite nurses, and our social worker that introduced us to a family who had been diagnosed only 2 days prior.  All it took was one look into their eyes and I was hugging and crying with the mom, while Jimmy did likewise with the dad.  Their shock, grief and overwhelm was palpable, and all too reminiscent.  I think seeing Lulu there, bouncing up and down like a caffeinated bunny was reassuring to them.  Their 4-year-old son also had a.l.l.  Max and Lulu each gave them the $10 they had received from their “aunt” Carrie, to buy a gift for their son.  It was very tender, and the parents took a picture of our kids in their laps, to show to their son later.


I’ve gone back to working on more photo shoots, and after a rough first day, felt back in the swing again.  The first day was just tough because I had to return to the ‘scene of the crime’, in a way …  I went back to the photo studio where I found out Lulu had cancer, and it was much more difficult than I had anticipated.  I was actually shaking as I drove there, and couldn’t even walk past the station where I had learned the life-changing news.  Ugh.  I was lucky to work with some wonderful models and crew though, and one photographer even brought me a beautiful bouquet of flowers to welcome me back.  That gesture was really big for me somehow.


After that week, I spent left on my first work trip in over a year.  I went to NYC to work with a new crew, with the exception of my art director/friend.  It ended up being the perfect trip, with a fantastic crew who dressed up every day including a pajama day, hip-hop day (see above – I’m so gangsta, ha!), and pirate day!  Who does that?!?  We all hit it off and ended up going out the last night and having a lot more fun than my head would have asked for the next morning :-).  Oh, and my friend and I even caught a show!  We saw Chicago, and it was her first big show ever.  I swear I had more fun watching her delight than I did the performances!  There’s nothing like your first Broadway show.  She went from 36 to 6-years old as she sat on the edge of her seat, her hands moving from her open mouth to her heart over and over again.

Lulu missed Mommy lots, but got through the week well.  I was so relieved.  It was very difficult to leave, but it was also much needed time for me to be … me again.

I entered a whirlwind upon my return as we prepared to have a film crew to our house the next day.  Do you remember the poster Lulu was in for Jazz Pharmaceuticals?  After meeting with them, they asked us if we’d be interested in doing more education with them.  They are the company that had the alternative drug to PEG-asparagenase, the drug Lulu almost died from when she had an allergic reaction to it.  We are glad there are companies out there who are looking for alternative and solutions to problems like these, and were happy to work with them.   I can’t say that about every drug company, but they really have a culture of integrity that has been consistent in every person we’ve met there.

They spent about 6 hours interviewing us, and made us feel very comfortable while discussing difficult topics; not an easy job.  Jimmy and I went first while the kids were in another room, then Lulu went solo and didn’t want to perform.  She was so shy you could barely hear her, which cracked me up because she is usually so loud and boisterous!  We all made sure the questions weren’t too pointed for her, as we really don’t want her to recall all the detailed horrors of her journey.  Max had the final interview, and of course nailed it.  That kid!  He answered the questions in his wise-old-young man way.  It was actually good for us to hear him sum things up and know his understanding even surpassed what we thought he comprehended.

More good news!  We will be flying to Palm Springs to speak at the National Sales Convention for Jazz Pharma.  The four of us will be featured on stage as well as in a break-out room for more in-depth q&a.  They want their company to see real faces of cancer, to keep what they do in tangible perspective.  I think we will serve as both a warning and an inspiration.  As we discussed during the taping, we never thought this would be our story, but cancer is indiscriminate.  We feel honored to participate in this way, and feel strongly about raising awareness about childhood cancer.


This leads me to the lowlight portion of my entry.  Jimmy’s mother recently underwent two back surgeries, finding out shortly after, that he leg had broken just below the hip.  She had another surgery with pins and screws to fuse her leg back together.  She is recovering, but still in tremendous pain and we appreciate any good juju, thoughts and prayers you might send her way.  Her name is Sharon.

Overall, life is feeling hopeful again.  Jimmy is off on a work trip; Lulu is home with a cold, but nothing more.  Hopeful … for the first time in a long time.   I’m trying to stay in the moments, and feel them fully.  I’m doing my best not to think about the last year too much, or the fears of the future.   I’m remembering my previous entry on this topic:

Sit in the moments like a jazz musician sits in the pocket, never before or after the beat, behind or ahead of it.  Enjoy the sweetness of each note as it plays out.

Did I just quote myself?  What a dork.


a.l.l. of us

 IMG_2322 Oh, Mom …

Calling of the Heart

Hello Friends,

I have to share something with you this week. It’s not my story. Well, it is … but it isn’t. I’m so touched by the friendship I’ve found through a fellow blogger. I didn’t expect it, but I surely cherish it. I’ll let her words tell the story:

Stephanie Raffelock’s blog “Calling of the Heart”

You can fall in love on a blog. Honestly you can. I have fallen in love with a family. There’s a mom, who is the blog writer. Her name is T and she is the reason that I came to know them all. There is a father who is strong, brave and very kind. There is a big brother, that if God would let you choose a perfect big brother, this is the kid you would choose. They call him “Bugs.” And then there’s Lulu. Lulu is a hero to a lot of people and she is winning a battle with cancer at a tender age when no one should have to fight such battles, but fight she does and I am convinced she is winning. I follow this blog so that I can keep up on Lulu’s progress, Bugs’ inspiring support, and mom and dad’s amazing, horrible/beautiful journey.

Recently Lulu was in a Christmas program and I heard her little voice singing straight to my heart over the magic of the internet. I was inspired to write a Christmas story just for Lulu and her brother, Bugs and my Labrador retriever, Jeter. I like to put Jeter into a story when I can, and as you will see, he is crucial to the outcome of this tail, er, um, I mean “tale.” So here is my story, dedicated to a family that I have fallen in love with. It’s called “How Lulu, Bugs and Jeter Saved Christmas“ (Note, since this posting, Stephanie has taken a break from her blog.  We miss her writing very much.  She has given me a copy of the story which I will post below)

Thank you Stephanie, you’ve made our holidays brighter!


a.l.l. of us


How Lulu, Bugs and Jeter Saved Christmas

Lulu was a very special little girl with a really special big brother, affectionately known as Bugs. Lulu was sick sometimes so she knew all about what it was to hurt and not feel good. This made her heart very big and very sweet. She could so easily see other people’s hurt and knew how to love them back to feeling better. The big brother knew how to be caring because loving his little Lulu the way he did, his heart too was very big from all the selfless kindness he had learned.

iStock_000018432315XSmallLulu and Bugs were looking forward to Christmas, when Bugs got an email one day from Santa. It read:Dear Bugs and Lulu, I am running late this year and I need a couple of great kids to help me or there may be houses I cannot get to on Christmas eve. I know that you two are very good at helping others, so can you help Santa this year? I need you to take over gift delivery for the west coast. I will drop off a bag of presents with addresses next week. Look next to your fireplace in the morning on Tuesday.”
Love, Santa

Now of course Bugs printed out Santa’s email and showed it to Lulu right away. “How are we going to help?” asked Bugs.

“We are going to have to find away to fly around the sky and deliver packages to the children on the west coast,” said Lulu.

“I wish we had some reindeer,” said the big brother. “That would make everything perfect. We could fly around and get gifts to all the kids in time for Christmas morning.”

Then Lulu had an idea, an absolutely brilliant and wonderful idea. “There is a Labrador retriever that lives not too far from here named Jeter. The owner is always saying how Jeter doesn’t walk anywhere, he flies.”

“Ummm, the owner might have meant that differently than you are taking it, Lulu.”iStock_000018477838Small

“No, she said, shaking her head. “I believe that Jeter the Labrador can fly and he is just the dog for the job!  We can make him a reindeer costume and that will help.”  So Lulu excitedly ran off and found a brown bath towel and some old felt in her art area, and she started making a costume for Jeter, so he could fly like a reindeer.

Tuesday morning there was a big bag of gifts next to the fireplace, just as Santa had said.  Attached to the bag was an envelope filled with names and addresses…and on the envelope was a small note that looked like it was written in Santa’s own handwriting:   Don’t worry, your mom and dad cannot see this bag.  It is invisible to everyone but you.  Thanks again for your help—Santa

“Well that’s a relief, “said the big brother after he read the note.  Now I hope we’ll find a way to get all these presents delivered.

Lulu rolled her eyes.  “I told you, Jeter can fly.  We just need to dress him up in some antlers and some other stuff so that he looks like a reindeer.  Look at what I made.”  Lulu pulled out the brown doggie cape and antlers from under the couch and smiled proudly as she held them up for Bugs.

“We have to figure out how to get Jeter without actually stealing him from the yard,” said Bugs.

“Why don’t we just offer to walk him on Christmas Eve?”  So the plan began to take shape.  Lulu and Bugs had a reindeer costume for Jeter and a way to get the dog for Christmas Eve.  And  next to the fireplace was a bag of gifts that they were going to deliver to all the kids on the west coast.

Bugs walked over to the bag.  “This is going to be really heavy.”  But just as he said that the bag rose a couple of inches off of the floor.

“OMG,” said Lulu,  “looks like all we will have to do is guide it.

Later that afternoon their mom was serving them soup and crackers for lunch.  The kids spoke in whispers and were carefully hiding a list that they were making.  It was a list of everything that they would need to do Christmas Eve in order to get the presents delivered.

“You two seem like you have a little plan going,” said mom.

Quickly Bugs put the list in his pocket and grabbed a cracker. “There’s no plan.  We were just talking about Christmas and how cool it’s going to be.”

The mom smiled.  “Well, don’t let me interrupt,” she said, and she returned to rattling around the kitchen or whatever it is that mothers actually do in the kitchen.

It seems like the days couldn’t go fast enough between the now and Christmas Eve and Lulu and Bugs had never been so excited.  They had moved all of the gardening tools out of a large wheel barrow in the garage and decided it was big enough to hold them and the bag of presents.  They rigged up a harness for Jeter so that he could pull the wheelbarrow across the sky, though Bugs wasn’t too sure about a Labrador retriever actually flying.  Lulu was convincing though.

On Christmas Eve day, Lulu wasn’t feeling too well. It happened sometimes  She had good days and not so good days.  Bugs was afraid that maybe they wouldn’t be able to go.  Life could be up and down like that at his house.  One minute you have exciting plans and the next minute Lulu’s needs become the centerpiece of the family.  By afternoon though, Lulu was feeling strength flowing into her body and her heart and she called out to Bugs from her bed.  Bugs sat on the edge of Lulu’s bed and Lulu broke into a big, mischievous grin.  “Let’s do this.  Come and get me after mom and dad have gone to bed.”

iStock_000019156130XSmallA light snow was falling and a winter moon hung low in the sky when Lulu and Bugs quietly and secretly snuck out the front door.  The two kids wheeled the wheelbarrow down the street with the bag of presents inside, along with the reindeer costume and harness for Jeter.  They knocked politely on the owner’s door, with the wheelbarrow out of sight, of course.  “Hi,” said the two angelic little faces. “We wondered if we could take Jeter for a walk?”

“It’s awfully late for you two to be out, isn’t it?

“Well,” said Bugs “We are so excited for Christmas that we can’t sleep.  I think if we can take Jeter for a walk and then put him back in your yard, we will all sleep better.”

The owner handed Bugs the leash and told him to go get Jeter from the yard.  Lulu and Bugs smiled and waved, calling out Merry Christmas before they ran like the wind through the gate and into the back yard where a yellow Lab sat waiting as if he knew exactly what they were there for.  No leash was necessary because Jeter was already following the two out of the yard and into the bushes where the kids had hidden the wheelbarrow with the presents.

Lulu pulled out the reindeer costume and put it on Jeter.  “I know you can fly and if anyone sees you, just tell them you are a reindeer.”

“He can’t talk,” said Bugs.

“We don’t know that for sure,” replied Lulu as she fastened the reindeer costume around Jeter’s neck and straightened the antlers so he would for sure look like a reindeer.

Bugs harnessed Jeter to the wheelbarrow and the kids crawled inside with the big bag of presents in their laps.  “Okay Jeter, this is it. Giddy up.”  And with that Jeter began running faster and faster and suddenly they were airborne.  Bugs mouth fell open and it took a minute to catch his breath.  Lulu smiled a smug little smile and said “Told ya.”  Off into the night sky they went, snow swirling around them, lights twinkling below them.

“How do we know when we are on the west coast?” asked Lulu.

“The lights will stop at the ocean and we’ll see the outline of the coast.”

Lulu got a worried look on her usually confident little face and said “How do we get the presents into the houses?  Do we just drop them through a chimney?  What if there are no chimneys?  Do we use the front door?”  And just as she was getting truly worried, they saw the coast up ahead.  Jeter acted like he had been flying wheelbarrows across the sky his whole life and he dipped down low to the roof line of a row of houses and turned his head and barked three times.

“I think he wants us to drop a present,” said Bugs.  So he picked a package.  “I hope this is the right one for the right address.” And as he dropped the package it turned to golden glittering light and swooshed into the house under the door.  So, he picked another package and again, it turned to golden glittering light and found its way to another door.  Lulu picked a package and dropped it watching it swirl under the doorway of yet another house.  The kids started laughing and picking and dropping packages at a very rapid rate.  Jeter howled and wagged his tail with delight.  It seemed as thought Santa’s bag held an inexhaustible supply of gifts.  Up and down the coast they went, dropping packages and watching them find their way into homes in the form of glittering light.

As Lulu and Bugs flew about the sky in the wheelbarrow pulled by Jeter the flying Labrador retriever, they started to sing:

Christmas is a Time, Christmas is a Time, Christmas is a Time to Love

We often start to worry, and people get upset when things don’t all go right on Christmas DayiStock_000014318724XSmall

What we should remember, in all the push and shove is Christmas is a time to love

Maybe things don’t sound right, or look the way they should

and maybe they’re not perfectly in tune …

It really doesn’t matter, let’s keep our eyes above

’cause Christmas is a time to love

The  singing made everything very easy and pretty soon all of the packages were delivered and they were flying toward home.  As Jeter landed he knew in his doggie heart and mind that he had two very tired passengers.  He pulled the wheelbarrow to their yard and just like his mother had done with him, he gently picked up each child and managed to get through the front door and tuck them each into bed, nosing the covers up over them.  Afterward, Jeter went to his own home, jumped over the fence climbed through the doggie door and fell into a deep and satisfying slumber.

Before the sun was up, Jeter’s owner padded downstairs to make a pot of coffee and noticed the dog sleeping in front of the tree.  “What in the world?  Where did you get this reindeer costume?” she asked as she bent over to untie the brown towel and antlers.  “Those kids are something, I’ll tell you.”  A tired Jeter looked up and wagged is tale before putting his head back down to sleep.  “That must have been quite the walk, Jeter.  I don’t think I’ve ever seen you so mellow. Have a good nap.  You’re a good dog.”

In another house a couple of blocks away a light glowed in the bedroom window of one Lulu.  Kneeling by her bed was a jolly old man with a long white beard in a red suit.  “Thanks for helping me out kid.”  Lulu was still half asleep but she nodded at the old guy and said “You’re welcome.”

iStock_000002145962XSmall“Hold out your hands, “said Santa.  I have something for you.  A special gift for a special girl.  Lulu held out her hands and was amazed.  Santa had placed a light in her hands.  “Oh my gosh,” exclaimed the little girl.  “What is this?”

“This,” said Santa “is an inexhaustible supply of beauty, love and hope.  Whenever you need or want those things, or want to give them to others, just place your hands over your heart.”  With that the old man kissed Lulu’s forehead and tip toed out of the room, as she had already fallen back to sleep…with her hands held to her heart.

Santa moved on to Bugs room and quietly opened the door.  “Hey buddy,” he said.  “You guys did a really good job out there tonight. Thank you for all of your help.”

“You’re welcome, Santa.”

“I have something for you, Bugs.”  Santa handed Bugs a small bag.

“Thanks what’s in here?”

“This is what I like to call portable compassion.  You can take it anywhere.”

“What’s portable compassion?” Bugs wanted to know.

“Compassion is when your heart quivers because someone else is hurting and by your heart being open to them, you help to heal the hurt.  And portable just means you take it with you anywhere and everywhere. I know Bugs that sometimes Lulu gets all the attention, because she gets sick.  And I know that sometimes you feel invisible.  But please know, your parents see you.  Lulu sees you and all the world sees you and your goodness.  You’re a really special guy.  Remember to carry compassion with you.  Give it away freely and make sure that you always keep a little bit for yourself.”

Then Santa patted him on the  back, because that is what guys do.   And with that, Santa was gone and Bugs was rubbing his eyes as mom and dad walked into his room.

“Are you up? they both said in their cheeriest Christmas voices.  Am I up, thought Bugs.  Oh mom and dad, if you only knew!

“I’m up,” said Bugs and as he put on his bathrobe, he reached for the little bag of compassion and made sure he placed it in his pocket.iStock_000017816021XSmall

Christmas morning was filled with surprises and delights for all of the children on the west coast and in one home in one living room in one part of a very large country, the life of Lulu and  Bugs was also filled with wonderful surprises and delights.

As they sipped on hot chocolate and opened their Christmas presents their dad gazed out to the front lawn.  “How in the world did the wheelbarrow get into our front lawn?”

“Maybe Santa needed it to haul presents,” said Lulu.  And Bugs and Lulu exchanged knowing glances, holding onto Santa’s special gifts that would always, from this day forward save Christmas in their hearts.

Silver Lining (plus recording of Lulu singing)

IMG_1906 - Version 4

Hello Friends,

Since my last entry, Lulu’s counts dropped even lower, which was unexpected.  We had taken her off of her daily chemo, but she was still getting Bactrim two days a week and methotrexate once a week.  The first is to keep her from getting infections, and the second is another chemo drug.  These proved too much for her already falling counts, and her ANC (fighter white and red blood cell counts) dropped into the low 100’s.  A normal ANC is over 1500.  Needless to say, she was quarantined until further notice.

I was 3 days into a healing cleanse, our winter launch was a few days later, and Jimmy was deep into work.  My usual response to an unexpected storm cloud like this is slight panic, wondering how I’ll work, what we’ll do at home, how I’ll get to the grocery store, etc.  But Lulu was absolutely thrilled to be on lockdown, and spend time at home.  Her attitude must have been contagious.  Instead of my usual coping through the 5 steps of grieving, I jumped right to acceptance.  There was something in her heart that reached out and touched mine in a way only a parent can understand.

We were instructed to take her off all medication.  She was home for 3.5 weeks.  The most interesting thing about this time, was watching my little Lulu return to me.  Every day she was off the medication, I could see the fog lifting.  Slowly but surely, her sweet spirit was fighting its way back!  The relief and joy in seeing the ‘real’ her again, combined with precious time together turned out to be the best Christmas gift I could ever have asked for.  I was falling in love with my Lulu all over again.  My little girl was still in there after all.

There was even a shift in her voice, which went from almost foghorn to tinker bell.  The OCD dissipated into near nonexistence.  Her babbling became less manic, and more bubbly: “Everybody makes up words Mama, China people, Mericans, even people who can’t talk!  They make up words with their hands.  You and me too, we make up words!”   She is fiercely funny, and can deliver a line in such a dead-pan way, you’d think she was a 25 year-old comedienne.  After asking her to clean up her art area (she’s since learned the word chaos) she says: “I just cleaned up this mess, am I the maid here?  I don’t think so.  I don’t want to have to clean this mess up again.  Good grief!”  You may be thinking she’s mimicking me here, but she’s not.  She ends with a knowing smirk on her face, fully aware of how funny her faux tirade is.

We watched girly movies, cuddled, made art instillations and stayed in our jammies for 3 days in a row, just because we could.  Jimmy’s schedule let up the last week, and he and the kids bedazzled and holidazed the house magnificently.  I didn’t grow up in a house where we decorated for the holidays, and I truly appreciate that Jimmy cares so much about making this a tradition for us.

Lulu returned to school late last week, just in time for her holiday concert.  As the three of us sat in the audience, I fought back the big ugly cry that snuck up on me as I watched her on stage.  There was my beautiful little girl with her newly sprouting hair, dressed in a green and black vintage-y dress, with a huge black flower in her headband singing her little heart out.  I thought back to where we were last Christmas, and where we are now.  The feeling of gratefulness washed over me as if someone had dumped buckets of warm water over my head.   Thank you, thank you, thank you God and universe for saving this precious soul.

The holidays are upon us, and we couldn’t be happier.  Maybe every cloud really does have a silver lining.  Maybe we can forget the misery but remember the lessons.  Maybe we can minimize the suffering and expand the laughter.  Maybe, just maybe, hope will reside in us permanently.  For now, maybe feels pretty grand.

Enjoy this audio clip of Lulu singing her Christmas song through the link below (If Cindy Lou Who could sing, this is definitely what she would sound like!)

Lastly,  I’ll leave you with a very important piece of advice from Lulu:

“Never, NEVER run with your hands in your pockets!”


Love, and Happy Holidays,

a.l.l. of us

LYRICS – Christmas is a Time To Love

Christmas is a TIme, Christmas is a Time, Christmas is a Time to Love

We often start to worry, and people get upset when things don’t all go right on Christmas Day

What we should remember, in all the push and shove is Christmas is a time to love

(repeat chorus)

Maybe things don’t sound right, or look the way they should

and maybe they’re not perfectly in tune …

It really doesn’t matter, let’s keep our eyes above

’cause Christmas is a time to love

(repeat chorus)

A Little Nitty Gritty


Hello Friends,

I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family.

Although she’s still doing well overall, we’ve had a bit of a detour this last couple of weeks.  Her ANC (basically, her immunity measured in blood cells) was rising to slightly beyond protocol.  The docs like to keep her counts between 500-1500 during Maintenance Therapy, to ensure that the leukemia doesn’t have a chance to come back.  Lu’s ANC was climbing into the 1600, then 1700’s.  To counteract this, they upped her chemo dose by 25%.  Unfortunately, this made her nauseous, and she started vomiting again Ugh, just pulling out the ol’ puke buckets made us feel a bit sick too. We added some more anti-nausea medicine to her regimine, which mostly did the trick.

But then we discovered that her ANC had been knocked down WAY too far.  The week of her 6th birthday, she had her usual in-patient spinal tap and IV chemo where they also check her bloodwork.  Her ANC was down to the low 100’s.  This basically meant she’s on lockdown until her counts rise.  She had been looking forward to, and talking about, her birthday party at Chuck E. Cheese for, oh, the last 6 months?  Some of the docs and nurses said we could probably go ahead with the party, weighing out the costs/benefits.  My gut told me not to, as disappointed as I knew she would be.  I couldn’t feel good about her having a fun party, but possibly ending up in the hospital the week after.

Bonnie and the nurses brought  a cake and presents to her in clinic, which at least felt like a bit of a celebration.  We also decided to make a quick trip to her school, after I had her teacher promise to flea-dip the kids in antibacterial gel.  We brought rainbow-colored cupcakes, and her class was beyond precious (see silly faces pic below)!  We couldn’t be luckier to have her teacher and school on our side.  They’ve been incredibly loving, patient and flexible with our ever-changing circumstance.

Lulu was more understanding than I ever would have guessed she’d be about missing her birthday party, but we were still so disappointed for her.  Her counts ended up not rising as expected, and the week after she was only in the low 200’s.  At least we knew we had made the right call to cancel her party.  This meant we’d also have to forgo Thanksgiving with friends.  But we made the best of it, instead, staying home and eating Jimmy’s delicious chicken with prosciutto over pasta.  YUM! We reminded ourselves of last year, when we spent every single holiday in the hospital, and counted our blessings to be together in our home this year.

Her OCD – like behavior continues to be an issue, and we’re doing our best with that with what we know and are learning.  It can be VERY trying sometimes and we try to keep our patience.

Max is continuing to excel in school and sports.  Luckily, he’s been staying healthy.  That is, until one Monday morning … Suffice it to say I was taken unawares when my son became suddenly ill on the way to school.  Well, he did tell me he didn’t feel well in the morning, but I pretty much told him to suck it up, eat some breakfast and get to school.  I regretted those words wholeheartedly a few minutes later.  After ALL the puke I’ve dealt with over the past year, you’d think I’d have emergency bins in the car.  I used to, and still bring them when Lulu has to travel, but my son is never sick!  He gets a bit carsick, but never actually GETS sick in the car, so when he told me he still felt icky in his tummy I continued to chalk it up to a little nausea.

Then, it began …  The best way I can describe it, is that he threw up like a boy.  It just came out without any focus or finesse.  Lulu gives me just the right amount of warning, and we’ve never missed the bucket.  Max just exploded all over.  It hit his chest first,  then all over his lap into the crook of his legs, which spilled between and under his butt and onto my back seat.  There was nowhere to pull over, so I told him to try to find something to throw up into.  Onto his shoes it went, and I started yelling “open the window, and puke out the window!!!”.  He faced the window, and full on puked into it, while it was still rolled up. Into the crack of the window and the door it went, dribbling onto the floor.  He finally started unrolling the window, but the damn back seats have the childproof windows that only roll down halfway, so more volcanic eruptions onto the side of the window.  I finally pulled over to a closed gas station, where I got him out and started dry heaving myself, as the smell of him wafted up and overwhelmed me.  I’m sure it was quite a site for the passers by.  And not a wet wipe or a kleenex to be found.

Luckily, it was just a 24 hour flu, but I now feel like I’ve been on an episode of Sienfeld, as I will NEVUH get the smell out of my car, and may have to sell it!

In the scheme of things, these are such small trials.  Jimmy and I are so grateful to continue on the work path, and working on finding some quality time together as well.  I’m heading back into doing more photo shoots as my consulting job ebbs for the time being.  Jimmy’s working from home for the holidays and I can’t wait to put up the Christmas tree this year, to circle round it together and celebrate all of our health and good fortune.  Even if there might be a puke bin hidden underneath the pine branches …


a.l.l. of us


To my Big Boy on Thanksgiving

Hello on this special holiday!

There are so very many things to be thankful for this year.  But I’m dedicating this Thanksgiving to my son, who sits by the sidelines while his sister receives positive and negative attention. As she is showered with gifts, he resides quietly in grace. He thrives despite stress, and brings his gift of laughter to the worst of situations.
I love you ‘Bugs’, you are an amazing unsung hero, wise beyond your years, and I’m so thankful to be your mom.

Happy Thanksgiving to all the unsung heroes out there!


a.l.l. of us

Carrot Juice or Chemo?

They say there are two things you should never talk about at the dinner table: politics and religion.  I beg to differ.  I’d argue that food has become almost as controversial as politics or religion.  Think of all the nutrition information out there, and how confusing it is, yet everyone has a strong point of view on the subject:  Lean meat protein is good. No, meat is bad.   If you know where your meat comes from, it’s ok to eat it.  No, plant based protein is the only healthy option.  Fish is healthy. Fish is toxic, etc.  Then, there are the confusing terms and labels like farm raised, free-range, grass fed, omega 3 added, organic, fortified, ‘natural’, and on and on and on …

I have gluten sensitivity (celiac), which can be tricky in a social environment.  Although I always try to be subtle when asking the server for gluten-free options, I inevitably end up in a conversation about gluten.  People always like to know how it affects you.  Well, if you look up the main symptoms, it doesn’t exactly make pleasant dinner conversation.  For me, it was throwing up.   Yackity-yak-yacking after gluten-filled meals.  Mostly, people get BAD gas.  I’m not talking garden-variety gas; I’m talking peel the paint off the walls, asphyxiating green gas bombs!  Do you still want to know the symptoms?  The worst affect is the villi in your stomach lining get damaged and lie flat, which doesn’t allow proper absorption of vitamins and minerals.  This can lead to a host of other ailments, including fibromyalgia which I suffer from.

Since I’m not a big pill-taker, I prefer to find natural alternatives whenever possible.  This has led me to have a fascination with the link between food and wellness.  I’ve done some research on various therapies including The China Study, which is a plant-based vegetarian diet said to reverse heart disease and cancer.  The Gerson Therapy, a very controversial cancer therapy that involves heavy juicing, coffee enemas and the like.  I’ve also looked into Ayurveda, veganism acupuncture, etc.  I’m not endorsing or following any particular protocol, but I like learning about different approaches.

At our house, we strive (don’t always succeed) to eat organic and local products, within the balance of a fast-paced lifestyle, and a love of good restaurants and eating out.  Yes, that means we eat fast food sometimes.  I’ve had great success with keeping my symptoms at bay when I’m eating well.  This means clean, mostly organic whole foods.  However, I’m not doing so well with that this year and wow, can I tell the difference!

So … when Lulu was diagnosed with cancer, it made me question a lot of things including the food she eats.  She’s a notoriously picky eater, and has battled our food choices since I can remember.  I’m sure having an undiagnosed infected appendix affected her digestion as well.  I’m sure it wasn’t any one thing, but I’d like to try control the elements I can to help her heal.

That being said, people have suggested we try some alternative therapies including heavy vitamin therapy, juicing, and even ingesting silver as of recent.  I like my alternative therapies to have science backing them up, but with the amount of free-floating information out there, it’s more than confusing.  What I know for sure is that Lulu’s cancer was so fast moving there was NO WAY we would ever consider an alternative therapy.  If we hadn’t gotten her started on chemo immediately, she wouldn’t be here today.  Within a week after diagnosis, her bone marrow had been so overloaded with leukemic blasts that she couldn’t walk and was in extreme pain.  Do I wish I could give her some carrot juice and a coffee enema to cure her?  YES!  But the science simply isn’t there.  Do I hate giving her toxic medication every single day that may cause long-term harm to her?  YES!  Do I worry she won’t be able to conceive?   That her OCD is mostly caused by the drugs?  That she may never be the same little girl we had before?  You guessed it, yep.  It’s awful feeling like you are poisoning your own child with the very thing that is saving them, knowing there is no alternative to treat her.  Aside from horrifying cancer itself, it’s devastating to see children die from the side effects of the drugs, not the disease.

What I hope for the future of medicine is that we can help fund studies to incorporate some less toxic alternatives into cancer treatment.  Nutrition related or not.  It’s not simple, it’s tragically difficult, and I truly believe in the sincerity of our caregivers. I’m not preaching, but I am wishing, hoping and believing.

We’ve been honored to find some brilliant scientists right here in our own state that are doing just that.  Yesterday, we donated the $3000 from Lulu’s lemon-aid stands to The Blood Research Institute.  They are on the brink of a huge discovery, which could make enormous strides towards a cure, and in reducing toxins during treatment.  We know that our donation is small compared to what they need, but we hope it will inspire others to do the same.  With kids like Lulu (Love 4 Lulu), Bo (Go Bo Foundation) our new friend Emma Rose (Emma Rose, A patient Helping Patients) and others, these gestures can add up to some real change.

Who knows, maybe in the near future we will take our chemo with a carrot juice chaser?


a.l.l. of us

Lulu’s cameo in a music video


Lulu has a cameo in the end of this music video (click on link below). The This Time Tomorrow Foundation has been a wonderful supporter of Lulu, and other children with cancer. We are honored to have her take part in this work.
Thank you!


a.l.l. of us

Lulu’s journey through pictures

Today marks one year since Lulu’s diagnosis.  I found it too difficult to put the year into words, so I’m  wrapping it up in pictures, and Lulu’s art.

Thank you to the staff at Children’s Hospital, who saved our daughter’s life on multiple occasions over the past year, and continue to treat her, and us with love, respect and compassion.  Thank you to our community, whom we believe wholeheartedly gave us the strength to get through this year.  Thank you to those who employed us, and for the new opportunities that await us.  Thank you to all those we have left unthanked, but made a difference in our lives.  Thank you to my amazing husband and incredible son who are the strongest men I’ve ever known.  Thank you to Lulu, who’s had to deal with life beyond imagination, and has used her own, to cope with a world that defies explanation.  I love you. I love you. I love you.
One more year, five months and counting. Here’s to a.l.l. of us!
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Lulu and “The Biebs”


Hello Friends,

Yes, it really is Justin Bieber, “The Biebs” in the pic with us.   There’s quite a story behind this pic that I thought I’d share with you:  We have a friend, Neil, who is very well connected.  He also happens to be one of the nicest people I’ve ever known, a true humanitarian.  He emailed a couple of weeks ago, letting us know he had tickets for a few of the kids from Children’s Hospital.    He told us up front that it would be VERY unlikely to meet Justin in person, and that in all his years of doing events like this, only ONE celebrity had ever taken the time to meet the kids with cancer (Pretty sad, huh?).  We were fine with it, and just happy to be able to go to the concert.

Then, we got the call:  “Come to the SE corner of 4th and State and we may get you in to meet Justin”.  It felt very COVERT OPS and we were all in.  We rushed to get dressed and I threw Lulu into the first pink something I could find.  Jimmy dropped us off, and we were instructed not to bring anyone else in, just one parent and no cameras of any kind.  We met the group at the door and were escorted into the building.  We felt so V.I.P., -at least for a while … we ended up in the hurry-up-and-wait mode for over an hour.  Lulu had been Sybil-on-steroids all day, and here we were, in a heightened situation, with no food and low blood sugar and little miss crabby-pants.  Lulu was crabby too :-0.  I hinted not very subtly to the other moms to see if they had any food.  Nope.  Someone offered a Swedish Fish, and I took it for Lulu out of desperation.  She didn’t like it.  More waiting.  Security guards from the Bieber Tour came out all uber-cool, overly tattooed, but accomodating.  They were a stark contrast to the clean-cut suited staff from the MACC Fund and Bradley Center.  Suddenly, an extremely intense man in a t-shirt came out and started speaking to Neil.  Well, not so much speaking as condescending and power tripping all over him.  He was within earshot of our group, right out in the open.   I heard bits and pieces of “I don’t care who you are, you’re no one.  I’M the only you have to listen to …”.   “Who are you? Who are you?  Do you have a kid with cancer?  No, then you need to leave now” … “we need to get these moms out of here, it’s only the kids if we even let them in” … “they have to go outside and come back in … I don’t care if they’re immune systems are compromised, they need to wait outside” … It went on, and I shuffled away out of sheer embarrassment for both my friend and the a-hole who was reading him the riot act.  Let me mention again, that Neil not only organizes events like this, but he started a very successful camp for children with AIDS, and has been named man of the year by GQ magazine.  I was steaming for him, and, although he completely kept his composure, said he’s never been treated like that in all his years.  It turns out the man didn’t work for either Beiber or The Bradley Center, and we still aren’t sure who he was with.

We finally got clearance for the first half of the group to go in.  NO parents, just kids.  Did I mention Lulu was clingy, breaking down, on day 5 of steroids and closing in on full-on OCD?  I thought, this is NEVUH going to happen.  But my little spitfire looked at me with fierce and focused determination and said “ OK Mama, I’ll do it.”  I think she has more gumption in her little finger than most people have in their entire bodies!   She followed the older girls in, and one mom who had to push her son in his wheelchair.  We waited and waited, then waited some more.  The second group was called and could come in with ONE parent.  Really?!?  NOW they can have a parent?  We tried to convince security to let those of us with very young children in, but it was a no.  After about 45 minutes, Neil and I went back to the main entrance to see if the kids were anywhere near coming out.  One of the guards from The Bradley Center recognized Neil and, with obvious respect, asked why he wasn’t inside, he was V.I.P.!  The guards graciously escorted us back in, and Neil, always concerned for everyone else, made sure I got to Lulu.  She had apparently had a couple minor breakdowns and had to go to the bathroom.  I think I got there just in time.

Another 20 minutes passed and Lulu was given a pink wristband that read “Meet and Greet Justin Bieber’.  There were girls breaking down like they were at a Beatles concert.  There was periodic ear-piercing screaming, and I kept glancing at the floor, waiting for someone to faint.  We were whisked into a waiting area outside a small, 20×20 foot black curtained-off square.   Suddenly, we were inside, and there he was, so petite and pale, with a warm twinkle in his eye and a friendly hello.  His handlers quickly set us up for a picture.  SNAP. And we were done.  Out of the tent, wristband cut off, and out to the waiting area.

The kids from Children’s were starting to fade, as we waited another hour to get into our suite.  Yep, they had a SUITE for us!  The Bradley Center security team was extremely generous, and allowed us to go up before the main seating opened.  We were met with staff and a full assortment of savory and sweet treats.  There were 3 extra private rooms within the suite for those who wished to sit there.  Carly Rae Jepsen opened with a few songs before Justin came out.  Lulu was still in rare form, and continued to OCD her way through the night.  I think she had about 20 mini-tantrums during the course of the concert, and I struggled to keep calm as she kept demanding I sit a certain way, hold my arms around her just so, sit statue still during the beginning and endings of the songs (or the song would be ruined), and not talk to anyone.  I was fighting my own inner battle, as I have a lot during the course of this new behavior.  Do I give in to help her feel the control she so desperately needs, or do I just not take this ludicrous behavior and demand she behaves?  The other kids were all enjoying the concert, not having tantrums and I felt like that mom with that kid.  I ended up doing a combination of both giving in and disciplining.  I knew she really couldn’t control her behavior between the roids and the anxiety.  At one point I dragged her kicking and screaming into the bathroom until she could calm down enough to go back out.  I knew she was enjoying being there, despite her demeanor, and didn’t want to ruin a good memory for her.  But it took every ounce of my patience to sit through that concert, unmoving on a barstool, palms sweaty against her tummy, back aching and legs stiff, acting like I was having a great time.  Carly and Justin did a great job of entertaining the crowd, proven by the fact that I may be permanently deaf in one ear from the screaming.

It turns out Lulu does have a great memory of the day, and I hope I did the right thing, but who knows?  This is new territory for us, and we don’t have an instruction manual.  We feel strongly that this behavior is mostly drug-induced, and hope it isn’t permanent.  No matter where it’s coming from, we are addressing it but are taking her to therapy once a week, to help her through it.

We would come to find out later that a meet and greet with a picture of Justin can cost upwards of $4000!  Through the amazing Neil, the generous MACC Fund and the gracious Bradley Center, we brought in 11 kids with cancer, and he took a picture with each of us.  Justin Bieber, I may not be in your target market, but I am a fan for life.

Go Bo.

ImageHello Friends,

Bo lost his brave battle with leukemia very early this morning.  Although he has left us, his spirit has not.  The Go Bo Foundation will continue to grow and carry out his wish to cure childhood cancer.  Please ‘like’ and follow The Go Bo Foundation on Facebook, and continue to support all the little warriors in the world.  My husband put our connection to Bo very clearly on a Facebook post:

RIP Bo. You were an Angel here are Earth and I’m sure God has a high place in Heaven for people like you. Bo Johnson, a brave young man, who despite his own illness, got up out of his hospital bed, and came to comfort my daughter in her time of need, a little girl he had never met, yet could hear crying out in agony in the middle of the night. Bo passed away last night at about 3AM. God bless you and keep you Bo. Please join me in sending love and peace to Bo’s Mom Annika who has lost her only child. And please comfort all of Bo’s family and friends.

It feels trivial to write about the little things going on in our lives right now, but I know you are also anxious to hear what has been happening.  It’s strange operating in these two worlds; cancer-land and ‘real-life’.  I sometimes feel like I have my feet on two different islands.  I’m towering above them like a giant, but also held down and cemented into the earth, arms outstretched to find balance, trudging slowly forward to form steps.  I no longer feel that my worlds are colliding … nor are they merging.  They are coexisting.

After Lulu’s heart tests, we are relieved that her heart is healthy and strong.  Her hernia will need surgery, but the docs want to wait 18 months until she is finished with her therapy, to lessen the risks.   Luckily, the hernia doesn’t bother her at all.  Unless that changes, she should be fine to wait.  My hernia turned out to be something I can wait on as well.  Apparently, I was experiencing searing nerve pain from the irritated hernia.  It has since subsided, much to my relief.  No mother-daughter hernia specials needed yet.

Lulu has been exhibiting some new behaviors that we looking into.  She’s started to show tendencies towards OCD.  It’s not diagnosed or labeled, just something we are going to address sooner than later so that it doesn’t turn into something more serious.  It’s certainly understandable, under the circumstances.  Children have very little control over their worlds at age 5, and throw in the year she’s had filled with upheaval, stress and uncertainty, and these symptoms can develop.  It’s her way of controlling SOMETHING.  Even if it’s where we stand, how we kiss and hug her goodbye, wave out the window just so, and say exactly what she needs us to say before we leave.  It’s become more and more apparent that the family as a whole has had to act around these behaviors.  We are going to learn how to parent under these circumstances, how to give her a sense of control, and help her feel secure in her world as much as possible.  She’s still doing very well in school, and this has not impeded her lifestyle day to day.  We are confident it will just be a matter of time before these rituals dissipate.

Again, these problems feel small right now, in light of the news on Bo.  Please keep Annika and their whole community in your prayers.  The ripple effect Bo has had on so many is nothing short of astonishing.  Thousands of people will be mourning today, but also lifted up by this wise young man.

GO BO.  YOLO (You Only Live Once)


a.l.l. of us

Bo Johnson article: Teaching us How to Live


Hello Friends,

Lulu had another lemon-aid stand today at our church.  We are so proud of our little one for inspiring these donations. We will do exact calculations, but we should have close to $3000 from our 3 lemon-aid stands, which will be donated to The Blood Research Institute.    Thank you to all who have given to this cause, especially now, during Childhood Cancer Awareness month.  If you wish to donate, please click on this link: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HWVDDTBWNFYDE

In lieu of my usual updates, and in honor of our fellow warriors, I am sharing an article about our friend Bo.  He is at home in hospice now.  He has not only touched our lives, but the lives of so many.  I think you will find it very uplifting, moving and inspiring:

Bo Johnson: Teaching Us How to Live

The lessons of a mother and her boy’s fight

September 06, 2012

On Monday, August 27, Bo Johnson chose to come home to die.

For nearly a year he battled valiantly against an extremely rare, extremely aggressive form of Extramedullary Acute Myeloid Leukemia, also known as EM AML (read “Bo’s Battle,” for more). That Sunday, his doctors told him there was nothing more they could do for him – that he will die from his disease.

Bo didn’t want to die in the hospital. Bo wanted to come home.

• • •

Bo Johnson, shortly after he shaved his head during chemotherapy treatments for Acute Myeloid Leukemia.

The 13-year-old Sister Bay boy with the humble smile has called the HOT Unit (Hemotology, Oncology, and Transplant) at Children’s Hospital of Wisconsin in Milwaukee his home for most of the last year.

His battle began with a Labor Day jet-ski accident and a broken pelvis that wouldn’t heal. On Oct. 8, 2011 doctors discovered he had Acute Myeloid Leukemia (AML), and within days he was prepping for chemotherapy. By the time he started treatment, his schoolmates had painted northern Door County orange – the color of the ribbon to show support for leukemia patients.

They made orange GO BO! ribbons, wrist-bands, t-shirts. They bought orange shoes and orange shoelaces. They painted orange ribbons on their cheeks and GO BO! on everything they could find.

“It’s been overwhelming to see all that support,” Bo says from the hospital bed his family set up in his grandmother’s home in Sister Bay. His voice is slowed to a drawl by the pain in his jaw, but not enough to hide how happy he is to be home among his friends. His bed faces out a wall of windows toward the water, just a few steps down from the beach where he yearns to play with his friends. “I don’t know what to think. People I don’t even know; you just feel so appreciated and comforted.”

Bo recognized right away that he was lucky. He had his mother Annika at his side, friends begging to visit, cards pouring in, and Facebook and Caring Bridge pages blowing up with messages from friends, family, and strangers.

The Gibraltar Cross Country team showed their support for Bo Johnson at a meet Aug. 29, wearing orange ribbons and painting GO BO! on their calves. photo by Joy Manweiler.

But on his floor in the hospital he saw other kids suffering, some of them seemingly alone. Many would become his friends, his mentors, his teammates in the fight against terrible odds.

“They taught me a lot,” he says. “They gave me advice. Jack and I would go along the floor pulling pranks on nurses. They showed me that it’s not all doom and gloom in there.”

Jack Bartosz was one of those who taught him how to fight. The nine-year-old battled neuroblastoma for seven years, and his “I Back Jack” campaign raises funds to support research for new treatments. But there’s a heartbreaking risk in making friends in the HOT unit.

Jack died the day Bo got the news that there was nothing more they could do for him.

“Bo has had to see a lot,” Annika says. “He has watched other children die. Watched his friends die.”

In the face of such trauma, Bo struggled to remain positive where others could not.

“Some of the kids refuse to come out of their room,” Bo says. “They keep their windows shut, blinds shut. It’s pitch dark in their room all day. But you’re not gonna get anywhere doing that.”

Did he ever want to do that?

“Oh yeah,” he says, rolling his head toward his Mom, “but she wouldn’t let me.”

He says that every note, every card, every ribbon helped him answer the bell each day. The flash mob at Fall Fest, the GO BO! group photos at the school and the Sister Bay Bays game. The notes and updates on his Facebook page and the school assembly when Dr. Phil Arnold talked to the students about his disease. The candlelight vigil in Sister Bay’s Marina Park turned into a video by Chris Miller for Bo to see.

• • •

A single orange ribbon waved from the Gibraltar School sign the day Bo Johnson returned home to Sister Bay. By the next day, orange ribbons waved from nearly every Northern Door sign, mailbox, and tree. Instagram photo by Myles Dannhausen Jr.

Learning that he had cancer was a shock, of course, but he says it wasn’t the worst moment in his ordeal.

“I just figured it is what it is,” Bo says. “I thought I would beat it. They told me it was going to be chemo, six months of treatment, and they said it was going to hurt…I didn’t know it was going to be this hard. They weren’t lying.”

He says this from his bed, his feet sticking out from beneath a Wisconsin Badgers blanket. His hands are too weak to shake, so when family friend Doug Bensyl arrives, Bo opts for a fist bump instead.

It is futile to try to imagine what it must be like for a boy who loves baseball, basketball, and football, to be confined to his bed, his body slaughtered by this disease. It is more futile still to try to comprehend how his spirit remains so strong.

There was a time Bo and Annika thought they had beaten his leukemia. He came home last February, his chemo complete. He returned to school on a limited schedule, put on 20 pounds, and was on his way to recovery.

They took a trip to Florida together, and when they returned Bo went to a Cal Ripken baseball practice and even ran the mile, beating his goal of eight minutes by two seconds.

“Well, what can we say!?!” Annika posted in their Caring Bridge journal in March. “Bo has never been happier than to be home with all his friends and familiar faces.”

Then he joined his classmates on the annual trip to Washington D.C. in late April. Near the end of the trip his arm swelled.

Bo was inspired by 9-year-old Jack Bartosz, who he met in the HOT unit of Wisconsin Children’s Hospital. Jack died Aug. 27 after battling neuroblastoma for seven years. Photo by Annika Johnson. photo by Annika Johnson.

On May 3, Bo’s 13th birthday, they learned that his leukemia was back. This time chemo was not an option. He needed a bone marrow transplant (also referred to as a stem cell transplant).

They always knew this was a possibility. It’s not uncommon for an AML patient to relapse in the first year after treatment. They prepped for the transplant, but on June 21, Dr. David Margolis, the program director for blood and marrow transplant at the Children’s Hospital of Wisconsin, entered Bo’s room and delivered news they couldn’t possibly be prepared for.

“We have grossly under-estimated Bo’s burden of leukemia,” Dr. Margolis, told them. “It’s not just bone marrow-loving. It’s bone-loving. We’ve never seen it like this, and we don’t know how to treat it.”

This is when they learned Bo had Extramedullary AML, meaning that the cancer doesn’t confine itself to the bone marrow, but attacks the bones throughout his body. That’s why it kept coming back, why Bo couldn’t get healthy. The chemotherapy was successful in fighting the AML, but chemo doesn’t kill the EM AML.

“Is this rare?” Annika asked him, through tears.

“Dr. Margolis practically fell off his chair and on top of Bo’s bed,” Annika remembers.

Bo’s schoolmates have shown their support in every way they can – ribbons, fundraisers, t-shirts, even special team shoes. photo by Paula Hedeen.

“It is so rare,” Dr. Margolis told them. “We have never seen a biological make-up like yours. Your whole chemistry is unlike anything we’ve seen before. You don’t function like a typical AML patient, and we don’t know why.”

They learned that his chance of beating the EM AML were extremely low, perhaps as low as three percent. It was the most difficult moment of Bo’s ordeal.

“I didn’t really have anything to say,” Bo recalls. “I just sat there with my eyes closed, waiting to hear what they said next.”

Annika thought they were talking about the wrong boy. She couldn’t talk; she could only cry.

His best option was Total Body Irradiation (TBI). It is not pleasant, and for the first time, his doctors gave him the option of palliative care.

On his second night home from the hospital Bo’s friends showed up to take him to one of his favorite “hot spots,” the Sister Bay beach. Pictured (left to right): Casey Weddig, Connor Brennan, Quinn Jacobs, Ian Chomeau, Seth Johnson, Andrew Iding, Ernie Erickson, Ava Erickson, Hannah Helm, Kara Caldecott, Shannon Martin, Adele Steebs, Mariah Davis and Bo Johnson (center). Photo by Chandra Johnson.

“You don’t have to do this,” Dr. Margolis told Bo. “This is going to be terribly painful, and it is very likely that it won’t work. Nobody will question your fight if you choose to go home.”

Annika left the decision to Bo. He had been through so much already. She had watched him writhe, heard him scream, in pain. It was up to him to go through it again.

Bo chose to put the gloves back on, to go another round against a disease that had him by every measure – a foot taller, a hundred pounds, an arm’s length. He would take its devastating blows one more time, in hopes of sneaking in one lucky punch.

Dr. Margolis told Bo that he had to be 100 percent sure that he could do it. That he couldn’t make any excuses, play possum for the nurses, which he was so good at, or beg out of walking laps around the floor. He gave Bo a motto.

“Just do it,” he told him, and he drew a swoosh on the white board of his door.

“I went by that the whole time,” Bo says. “You don’t want to take a bath? Well just do it. You don’t want to walk laps? Well just do it.”

The TBI decimated his tissue. He suffered from mucositis, which left him with open sores on his tongue, throat, and intestines that felt like shards of glass were slicing through his body.

For four weeks he couldn’t eat. The only thing he could swallow were the Cyclosporin pills to help his new stem cells grow. The pills were “three big horse pills,” Annika says, and Bo had to take painkillers just to swallow them.

• • •

When Bo chose to come home, his only regret was leaving his “second family” behind. The nurses at Children’s Hospital were incredibly personal, he says, helping him through every difficult day.

“It’s hard to be away from the hospital because you feel so safe there,” he says.

Annika has a great deal of respect for Dr. Margolis. He didn’t shield Bo from reality through this process, didn’t sugarcoat any news. In fact, he reminds Annika of a stubborn old Swede she knew.

“Dr. Margolis doesn’t hold back, he spits it out. He reminds me of my Dad,” she says, referring to her late father, the restaurateur Al Johnson.

The GO BO! ribbon has become a ubiquitous presence in Northern Door County.

Last week Dr. Margolis delivered the hardest truth.

“Bo is going to die from this,” he told them.

Dr. Margolis asked Bo what he wanted to do.

“I don’t want to die in the hospital,” replied Bo, who in a world without cruelty would instead be choosing a new pair of shoes for the coming school year, not where he wanted to die.

“I came home because I wanted to see everyone, to remind myself what Door County even looked like. I love the sunset every night,” he says. “I just didn’t want to go through the treatment again knowing I could have the most painful death out there. I wanted a peaceful death.”

Bo does not cry as he says this. He says it almost bluntly, as if it’s patently obvious. He is surrounded now by about a dozen of his friends, part of the growing stream that are coming to see him. He is happy to be with them, they are happy just to have him back, asking when they can take him to the beach, the favorite of the “hot spots” he wanted to get back to see.

• • •

Before he got leukemia, Bo and his mother would lay in bed and he sometimes asked her – “What would I do without you mom?”

“Don’t you worry,” she told him. “I will always be there to look after you.”

She never expected the tables to turn. Now they lie in his bed and he puts his arm around his mother. He tells her that he’s not scared, that she’s going to be okay.

“I don’t want you to sit in your house and cry all the time,” he said to his mother recently. “I need to know that you will be happy.”

Bo spent a lot of time over the last year thinking about what he would do if he could get healthy again. He thought of becoming a nurse, to pay forward what his nurses have done for him. This summer he came to grips with the idea he might not make it that long.

“I wanted to live a decent life as long as I could,” Bo says. He hoped not for a long life, but for another year or two. “I could do a lot in two years.”

“He could just be with his friends,” Annika says, “and do what they do every day. Go to the beach, the football games, the basketball games.”

That evening his friends wheeled him down to the pier where they used to leap into the bay. The next night he made it to Gibraltar’s varsity football game.

“He wouldn’t stop talking about it!” Annika says. She wants to take him to the first Packers game Sunday.

More than anything, Bo says he hopes that the support and love that his friends and community showed for him will not dissipate when he is gone. His mind turned to the small gifts that meant so much to him.

Bo Johnson with his mother Annika.

“I wanted to help people if I made it out,” Bo says. “I would just like to go to the hospital, even to [Scandia Village] just to help. Or take a spare $25 that would help a family up at the HOT unit. Donate food to the nurses. Just to help anyone I could in that kind of way.”

At the end of our conversation we talk about one of those small gestures, the orange ribbons that sprouted up on signs, trees, and telephone poles when the community learned Bo was coming home. He talks about what the outpouring of support has meant to him, what his friends have meant to him.

“I want them to know that they were my friends,” he says. “They’ve been supporting me. I’d just like to thank them. It means so much.”

Now, he wants people to remember him, but he wants them to continue supporting others the same way. After he got the news that there was nothing more the doctors could do for him, Bo gave his mother a mission.

“I want you to run every run, walk every walk,” he says. “It doesn’t matter who it’s for. Raise money, and go back to the HOT unit to give families a little money or a gift certificate. Anything.”

• • •

On Monday, August 27, Annika announced that Bo was coming home to die. She had it wrong.

On Wednesday, August 30, Bo Johnson came home to Sister Bay to teach us how to live.

View images.

Lulu describes … (recording)


Click on the link above to hear a recording of Lulu

Recording transcribed:

“His nose is a flower,

and I think that his legs are tree trunks,

and I think that his arms are branches,

and I think that , em, his soul is a sky,

I think his hair is the top of the tree

and I think that … um, his um, eyes are leaves

with beatles inside them

and I think that, um, well, I think that his brain is a cloud.”

Mom: “and who are you talking about?”

Lulu:  “God.”


No news is GREAT news!


Hello patient Friends!

It’s been a whirlwind lately, and I feel like a Tazmanian devil!  – a whirling dervish of new life is unfolding with camps, activities, work, change, new med schedules, work, friends, auditions, callbacks, tae Kwon do, dance class and did I mention work?  Whew!  Notice housework was NOT included in that list…

We officially started Maintenance Therapy 2 weeks ago.  After the spinal tap and IV chemo in clinic, Lulu was quite sick for a few days.  We thought uh-oh, is this what maintenance is going to be like?  She was taking about 16 pills/day including steroids, daily chemo, and counteractive drugs.  A couple of days in, she developed a fairly sever rash on both of her arms.  We called the H.O.T. unit to see if we’d have to make a trip to the dreaded emergency room.  They had us wait it out, to see if it worsened or she developed a fever.  NOPE!  No trip in!  YAY!  – and that seemed to set the tone for the remainder of the two weeks.

Each day, Lulu has been getting stronger, happier and busier.  She’s been going to a 2.5 hour daycare/camp and is in her glory!  We’ve even had a couple of play dates and each day, her excitement seems to grow exponentially.  At bedtime, she looks forward to the next day so much that she sets all her clothes out neatly, and has me write up a list of all the things we are going to do the next day.  Here is an example:

-Wake up

-Get dressed


-Make a few changes in the bathroom (my little artiste, she decorates the bathroom with her little trinkets and moves the soap dish over)

-Go to the park

-Get ice cream

-Cuggle with Mommy (Cuggle is my kids’ family word for cuddle-snuggle)

-Make art

-Watch a show

-Play with my brother

It absolutely brings tears to our eyes to see her having so much joy!  We’re doing our best to wean her off of as many drugs as possible, while still keeping her comfortable.  ‘Sybil’ is still rearing her ugly head here or there, but Lulu is winning out and trying her best to cast out that evil hold steroids can have over.  The more distraction and engagement she has, the happier she is, and she asks every day if she can go back to school yet.  I just can’t wait until she goes back to see her teachers and friends.

Max has been having an exciting summer, and just auditioned for the professional children’s theater here.  Over 600 kids audition at the generals.  He did such a good job that he was called back on the spot, even though the callbacks aren’t until September!  He had his first callback yesterday, and has another today for a different show!  I’ve NEVER seen him so happy and excited about anything … not even football.  It was so cute, and former-performer mama is proud as a peacock.  We’ve had so much fun preparing his monologues and audition material, what a great bonding thing for us to do together.

For Jimmy and I, life on Planet Multi-Task has been interesting.  He’s been traveling and working and working and overworking, in desperate need of a vacation.  I’ve been carting the kids around, and working a lot more in preparation for the launch of the E-com startup I’ve been working on.  I’m still enjoying it, despite the revved-up pace.  If being busy is the biggest problem I have, then life is grand.  Now, if only I could get a personal assistant who also did laundry and cooked…

Great news on our friends too:  BO has made an unbelievable turn-around.  He fought his way out of ICU and back to the H.O.T. unit.  He’s been doing everything asked of him and more, and the doctors are blown away by his progress.  His strength is nothing short of Olympic, and all these kids deserve a gold medal!  Kate too, has made great strides and is also in maintenance, and just celebrated her 4th birthday – at home!  Kaylee is healing well from her burns, and was discharged shortly after admission.  All those thoughts, prayers and good Juju are really working friends!

We also found out Lulu qualified for Make-a-Wish!  Now, the wish-granters begin finding out what her wish will be.  So far, she’s been telling us she wants to see the rainbows in Hawaii.  I guess that could work … J

With that, I’ll leave you with Lulu’s quote of the week:

“Love is the most important thing, because it brings power to other people”.


With love and gratitude,

a.l.l. of us

p.s.  A very special thank you to my BFF Jen and her girls walking in Relay For Life on Lulu’s behalf.  Here’s a video link of their efforts:  http://www.youtube.com/watch?v=wqjaDYJH-HY

An eventful day

Yesterday turned out to be an eventful day.  I got a phone call from my Dad, who had gone back home for a while.  He told us his wife’s granddaughter, Kaylee, had been severely burned in a campfire accident.  Apparently, one of the kids at the bonfire had thrown a large log onto the fire, which in turn threw a large burning log onto Kaylee.  Somehow, she had the presence of mind to jump into the lake, and the kids put wet towels on her.  She was burned on her thigh, side and chin and sent to the hospital.  It looks like she will make a full recovery, minus some scarring.  We are keeping her in our prayers.

Then late to clinic for Lulu’s spinal tap and chemo, we were bumped back.  This meant we’d have to wait even longer before she could eat.  After a minimally dramatic port access, we waited for her blood work to come back.  An announcement came over the loudspeaker calling out a CODE BLUE on the H.O.T. unit.  Oh no.  I thought I recognized the room number.  Maybe it’s familiar because we were right next to Bo’s room last time?  That’s it, right?  I asked the nurses and doctors, realizing full well they couldn’t disclose information about another patient, and I was putting them in an awkward position.  I continued to ask anyway, hoping to see some glimmer of confirmation or denial in their eyes.  Let me tell you these guys would all make for great poker players; not a twitch or a tell to be found.  I texted his mom, but no response.  Must wait.

Lulu’s ANC was only 250, so there’s no way we were starting treatment that day, and probably shouldn’t have set up a play date and dance class for the week!  I practically threw a bagel at Lu, who started devouring it.  Sometimes it still seems strange to see her eat!  After exam, learning the new protocol to come, and getting prescriptions called in, we are told we can go, and come back Monday for treatment.

I knew I was on the visitor list for Bo, so I casually asked at the security desk which room he was in.  My fears were confirmed.  Shit.  He’s been moved to ICU.  We later get a text from his mom that he’s had a seizure and they are doing a cat scan.  They’ve found something in his brain, but have to do an MRI to find out what.  I can imagine the terror his mom and he is feeling.  I was praying he might be sleeping during all of it.  They have to wait to find out the results, and are hoping it’s not leukemia in his brain.  Oh, that waiting for MRI results … brings me back to when Lu was so sick when her appendix burst, but we didn’t know yet.  Waiting is absolute agony.  I got another text at almost 10:30 pm from Bo’s mom sharing the news that it’s a complication from his medications that cause extremely high blood pressure.  It may be reversible, and they are treating it.  We were relieved, but still concerned, and continue to send them as much strength as possible.

Most of you don’t know Bo personally.  But I share his story because I feel like he’s everyone’s child.  He has the kind of beautiful spirit that makes you feel like you know him, he reminds you of your own precious child, or the one you hope you have.  He’s kind, sweet, strong and loving.  These kids really are all of our children.  I used to think this stuff happened to other people.  How naïve, and how superior!  It really can be any of us, at any time.  We’re all in this together.  If this sounds a bit maudlin or preachy …  I can’t help but be moved to by this year and the events that continue to unfold.

Lulu was shaken up as well, and I wish I could protect her from this madness … and that I would have been better able to hide my own emotions.  We are careful about what we say, but these situations have become a part of our everyday lives.  She said she was praying for Bo, and worried about him.  She wants him to be able to go home soon.

We are still trying to put emotion into action and had another successful lemon-aid stand, this time at our church.  We raised $600 in 2 hours for children’s cancer research.  Thank you for those of you who donated online as well, that helped a lot!  Jazz Pharmaceuticals donated $1000 to the MACC clinic at Children’s on our behalf, for Lulu’s photo shoot.  Many of you are raising money in races, biking, walking, running, swimming, and we are so touched by your efforts, and proud that you wear LULU on your shirts as you race.

Thank you, also, to the wonderful doctors and nurses at Children’s.  I neglected to mention Lulu had a party at clinic on her last day of delayed intensification.  It was her official last day of shots, and Bonnie, along with the other nurses, made a huge sign for her with balloons, candy and presents to celebrate.  THANK YOU.  I’m continually impressed with the care and thought you all put into your jobs.  You are still by our side for every scream, every tantrum, every hug and every giggle.  I don’t know how you can deal with the love and the loss your jobs entail, but I am grateful to have you.  And humbled by the strength you have to keep on loving, despite the risks to your own hearts.

Thank you all for reading, acting and sharing your hearts with not only Lulu, but with all of the Kate’s, the Joshua’s and the Bo’s of the world . . .


a.l.l. of us

Update and Lemon-Aid tomorrow


Just a quick update today.  We will be doing another lemon-aid stand at our church, all proceeds go to childhood cancer research: Sunday (tomorrow) July 15 from 11-1.
To donate to Love for Lulu:

Otherwise, not too much to report.  We’ve had a week off of treatment since Lu’s counts didn’t make it to start Maintenance Treatment.  We can tell some drugs are leaving her system and she’s showing wonderful signs of her true self.  She’s still having some tantrums, but after speaking with some of you who have 5-year-old girls, it doesn’t sound as out of the ordinary.  – or you’re just trying to make me feel better (you are).  My favorite line from Lulu this week came after I asked her to just TRY not to overreact to every little thing.  She responded very dramatically, hands waving in the air: “But Mama, I CAAAN’T!!!  It’s just how I WORK!!!”

Keeping it real as always, Jimmy and I had a date last week where we ended up ‘discussing’ (as my parents always called it) during the whole thing!  We discussed at the first restaurant starting with politics, on through dessert at the next stop. We went into everything we haven’t been able to cover in the last 8 months… just another way cancer affects a family; little time to communicate.  I guess we got it all out in one night, and we were able to tease each other about it the next day.  Now we can’t wait for the next date :-).

Jimmy’s mom is visiting after having what we hope is successful back surgery, so we have a full house here.  We are looking forward to setting up playdates for Lulu.  Her counts should be good enough from here on out to enter a normal-ish zone where she can play with healthy kids! Travels are ahead for hubby, and work is heating up for me so playdates are extra helpful, and heck knows Lulu needs to play with someone other than us!

I’ll write more soon, lots to do this weekend.  Hope to see you drinking lemonade tomorrow!

Love to you ALL

Reaching Bittersweet Maintenance


Hello Friends,

It always feels difficult to get started on these entries, but once the words begin to come, they do seem to pour out.  Today, I’ll start where I finished last; the lemon-aid stand.  I think we’re all still feeling the joy from that day.  We got up early, wiped the sleepy dust from our eyes and started cleaning, peeling and juicing to make the lemon-lime-strawberry concoction. We couldn’t just have regular ol’ lemonade … it had to be PINK!  We made gallons of it, and it was tasty!  As Jimmy documented every move on video, we somehow opened promptly at 10 o’clock.  It was hot but bearable outside, eased by the cloud-cover overhead.  Customers were ready at the wait, and came in droves throughout the day.

We had special guest appearances by little Kate, who looked positively beautiful, and Toussaint from the ‘Seeing in Believing’ May blog entry!  Neighbors, friends, church members and blog readers came and populated our front and back yards with kids in tow (who generously brought money from their piggy banks).  Our local news even came out to do a story on us, which I’ll try to post soon.  They did a lovely job, and played it at both the 5pm and 10pm news with Lulu lead-ins during the Olympic trials.  We felt our community holding us up once again, and wished we’d had more time to talk to every person who came.  I actually lost my voice by the end of the day!  I’m thrilled to report that with your help, our little 3 1/2-hour lemonade stand raised $1,725.14 for childhood cancer research!  We are planning another one July 15th at our church and, by summer’s end, hope that we can really make a difference in either the H.O.T. unit or the Blood Research Institute.  We’re speaking to people now to find out where the money can best be utilized, and not be lost in the red tape of donationland.

We spent the 4th of July at the hospital, because, ya know we like to spend every holiday there ;-).  We happened to be right next to Bo’s room, and I felt terribly that he had to hear Lu screaming through her shots while he was already having a hard time.  He’s in a torturous pain from mucositis, but got his double-cord transplant successfully after multiple rounds of total body radiation.  Please keep the good juju coming for him that all goes well.

We talked about getting to Maintenance Therapy with the docs, and what it will entail for Lulu.  It’s not as easy breezy as I had hoped, and the conversation left me a bit deflated.  She will start off with a spinal tap with intrathecal chemo, and a lot more chemotherapy to follow.  She will get one chemo drug at home EVERY SINGLE DAY for 20 MONTHS along with others received regularly and intermittently.  She will also get steroids 5 days every month (hear inner scream) and more spinal taps.  Wow.  The good news is that we won’t have to go into the hospital nearly as much as of recent.  If all goes well, she will only go in once/month!  Now that’s huge!  Her beautiful blonde hair will start growing back, and she can go back to school in the fall.  Halle-freakin’-Lulu-ya!!! We have the end date penned into our calendars: March 6, 2014.

On the home front, Lu is still a little spitfire, but showing flashes here and there of her old sweet self.  I’ve sworn to move out when she is between the ages of 12-16, and return after.  I’ll still call, and skype.  – Maybe even have a weekend visit and holidays … just kidding (mostly)!  I really do adore her and she is my little Tinkerbell.  They make ‘em cute for a reason, right?  Jimmy is, well, Jimmy is … hmm, too many words to fit in here.  He’s been working harder than I’ve ever seen him work in my life.  I must track down his swim coaches and thank them, because I truly believe his training in college has prepared him for this both mentally and physically.  You see, Jimmy was a world-ranked distance swimmer, in the 800 and the mile.  Can you even imagine swimming a mile!?!  I’d be happy to jog a mile these days!  I think you’d have to be incredibly tough on all fronts to do this, and do it for years.  So, coach Bob and Jack, thank you.  Sports really do shape a person.

Oh, and I must include his biggest news:  He had a personal dream come true last week!  His favorite band in the entire world is the Foo Fighters, and he got to film them at a live concert!!!  He was just adorably giddy about it, really unlike him who plays it very cool most of the time.  I loved seeing that side of him and he wholly deserved it.  At one point while he was shooting, Dave Grohl almost knocked him over when he came flying up to his camera.  I think Jimmy told me about it at least 5 times.   – Love it!

I’ve been continuing to work part-time on my consulting job, and loving every minute of it.  Thanks Grandpa, for holding down the fort while I’m working at the coffee shop, which the family now knows as my c’office.  I feel like I’m overflowing with pent-up work energy, like a runner crouched in the starting position on the track before the gun is fired.  I’ve needed this outlet, and am so grateful to have it.  It adds balance to me, to Lulu and to the whole family dynamic.  Max has been taking a theater camp, and he too, seems to be bubbling over with enthusiasm.  He’s actually super talkative at the end of the day!  I get to ask him all kinds of questions and actually get a response, well, except when I ask him about girls.  That’s still off limits.  I guess he’s not interested yet (yay!).  On the contrary, Lulu already talks about her little friend Franklin saying things like “Mama, sometimes I fink I wuuuuv him!” followed by a cheeky giggle.

Well, dear Friends, we are getting there.  Wherever ‘there’ is.  Getting to Maintenance, getting to the new normal and whatever that will mean.  I’m hoping the forecast is light on rain, and heavy on rainbows.


a.l.l. of us



Hello Friends,

I finally have a minute to give you an update.  Lulu is getting a blood transfusion at the hospital, and after getting some Benadryl, is heading off to what I hope will be a nap.  It’s quite peaceful here right now, the lights are dim, the nurses don’t have to check on us quite as often as usual, and I’m in my favorite lazy-boy recliner with laptop on my lap top.

It’s been a stressful time, although Lulu is doing amazingly well.  I feel a little guilty complaining because this course has been SO much better than expected.  Physically, Lu is kicking booty, hasn’t gotten sick once, is continuing to eat (junk food), and has enough energy for a thousand men.  I don’t know how someone can have so much energy on chemo.  It seems impossible.  I swear they’re slippin’ in some speed or amphetamines of some kind into the mix!

This brings me to what’s been harder to deal with; her mood.  ANGER has seriously set in, and it comes out hard, fast and often.  Her tone is as disrespectful as a teenage girl’s during puberty.  I think it’s a combo of all the drugs coursing through her veins, as well as a general feeling of ‘this sucks and I’m sick of it’.  She says things like “I wish I NEVER got sick in the first place!”  “Why do I have this and other kids don’t!?!”, and “YOU’RE lucky YOU’RE not sick!!!”  Can’t blame her.  We all feel the same way, including Max who also seems more affected than usual these days.  He’s been dealing with her anger as well, but luckily has camps to keep him distracted during the day.  It feels like this all should have been over a while ago, yet we go on and on with treatment.  She has to endure more shots in the legs, more pills, more chemo…  We spend a lot of time in the hospital: 4-5 days this week, and 3-4 next to get treatments. She also got an ear infection, which can make anyone crabby. I’m feeling slightly relieved that she needed blood today, since being low in reds makes you extremely irritable.  It feels like a partial answer at least.

I just had to take a break because, ironically, she threw a HUGE tantrum after taking a liquid pre-med she didn’t like.  She slammed her fist into her juice box, which exploded all over the room.  Of course the nurse and doctor were there to witness the event for maximum impact.  It’s hard not to be embarrassed by her behavior, and it’s even harder to keep my own temper under control as of late.  I’ve failed on a few occasions, but try every day to stay calm.  Dad and Jimmy have both been gone again, which makes it harder.  My dad had to go to help out with some flooding up north, and I know he is needed there.  Jimmy’s been all over different states working and we’ve been two ships passing in the night.

I have to tell you about a little escape I wriggled in.  I went to NYC for 2 days with the consulting job I’ve been working on.  Somehow, I’ve been juggling a fairly heavy load of work with caretaking (how does Jimmy do it?), and have truly been enjoying the distraction work brings.  The day I left, Jimmy got home at midnight from the airport, and I flew out at 4 a.m.  The trip seemed guided by fate from the get-go.  I ran into a model/friend whom I adore on the flight (I work in the fashion industry), and we ended up sharing a cab together and catching up on the way.  That seemed to set the tone for the whole trip.  My worlds kept merging in unexpected ways.  On more than one occasion, I would be in a meeting with someone who would share how cancer had touched their lives, or they were dealing with it now, or had dealt with it in the past.  No one knew of my situation, the information came organically.  Those of you who have children know what it is like to meet other parents and instantly be in the so-called Parent Club?  Being in the Cancer Club seems to create an even deeper and more instant bond.  I had a potential vendor hugging me with tears in her eyes, and shared an unspoken connection with a former colleague that went beyond the moment.  His partner had been just 2 years out of Cancerland.

This strange kismet continued into the evening.  A very good friend of mine is a famous Broadway percussionist and was performing at The Carlyle the night I was in town (brag, brag).  Luckily, my colleague Joseph was up for it, and we headed to the show.  We got the last two seats in the 75-person capacity room, and ended up moving over to what was a perfect spot for the show.  It was in intimate four-person cabaret act with Laura Osnes who sang the bejeezus out of every song.   She dedicated one song to her mother who had recently passed away.  I fought back the tears and hoped my colleague didn’t think me completely unprofessional.  This was juxtaposed by a shout-out that came as a surprise even to me when I all-too-loudly said ‘That’s Joel Freakin’ Gray!!!” as he stepped onstage to do a number with Laura.  Did I mention Tommy Tune was only a few feet away from us? It was an overwhelming blessing after not being out in so long.  We met my dear friend Larry after the show and talked with Laura.  She told me her mother had died of breast cancer, and I told her about my daughter.  More tears.  Sheesh.


The next day went very well, I kept it togethuh, and we flew out later that night.  Well, we flew out after our cab ran out of gas DURING RUSH HOUR ON THE FREEWAY IN NYC.  – And it felt like it was 115 degrees outside.  Something in me just knew we’d be ok, and I felt totally calm.  Sure enough, another cab pulled up within two minutes even though he was headed in late to a shift.  We got to the airport, waited for them to fix a leak, and landed home safely that night.

Back to reality; hardcore reality.  I know many of you are not only following Lulu’s progress, but have gotten to know a little about our friends Joshua, Kate and Bo.  Joshua is declining rapidly, but seems to be enjoying every minute he can with his family, traveling and meeting his idols.  Kate is starting to walk again, and eat a bit, but still has a long journey ahead.  Bo and his family got the devastating news that not only has his cancer returned, but it is difficult to treat, and a kind the docs have never seen before.  Long story short, they were given a couple of options.  They could do palliative care, which means just making him comfortable with no more treatment, or total body radiation and chemo and fighting like hell into the unknown.  He and his mom are choosing to fight!  Percentages of survival don’t matter if you’re in the right part of the equation, and I believe Bo is capable of being the exception.  Lulu and I visited him yesterday, and although I could see the sadness in his eyes, I could also see someone just pissed off and determined enough to fight.

As I hugged his mom, an amazingly strong and gregarious woman, I could feel her pain.  She loved seeing Lulu, but I know it’s difficult too.  When your child is very sick, it’s bittersweet to see other children doing well.  You’re so happy for them, but you also feel other emotions.  Not envy, but rather a deep longing.  You long for the blissful ignorance of having a healthy child, one you can take home and hug and love forever.  Having been on both sides of the coin, I’ve felt all these emotions, and know how other parents feel when they’re in similar positions.  It’s all just really hard.

I’ve been in tears daily since we got the news on Bo, and I know all of you as humans are affected by reading this.  While I ask for your continued thoughts and prayers for these families, I hope to call you into action as well.  I’ve realized my own tears, and feelings of sadness aren’t tangible; they don’t make any difference in the real world.  We want and need to DO more.  Lu had the idea of starting a lemonade stand to help other kids.   We will open Lulu’s Lemon- Aid Stand this Sunday (and as many days as we can) in front of our house, all donations to go to Children’s hospital and cancer research.  Even though this is a small gesture, it is something.  We plan to do much more in the way of donations after we get through our own medical bills.  I want to ask each of you to do whatever feels right to you, big or small.  Maybe it’s visiting someone who has cancer, sending a gift, making something to donate, giving blood or platelets which are always needed, making a meal, or donating in a monetary way, even buying local produce to help reduce pesticide use, whatever floats your boat.  Post it here to help inspire others, or keep it close to your heart.  If we all turn our empathy into action, maybe there will be less Lulu’s Kate’s Joshua’s and Bo’s in this fight.  The little things really do make a difference.  Lulu offered a woman a potato chip on the elevator yesterday.  A potato chip.  The woman crouched down, thanked her and gave her a hug.  She said she really needed that today, and broke down in tears.  I had seen her with her little boy earlier, knew what she was going through, and how that tiny chip and that big hug affected her.

We are only two weeks away from beginning our 20 months of Maintenance Therapy, and are pushing through in anticipation of a new normal.   Thank you, as always, for riding along with us for 8 long months and onward.  I know we’ve had readers come and go, but the majority of you have strapped in, read everything, and continue to keep up on the rainbows and storms of our journey.  We really wouldn’t be as strong without your support.

Thank you sincerely,

a.l.l. of us


Lulu’s Ad

Lulu's Ad

Here it is! We are so proud of our little firecracker. Yes, she is Spirited indeed …

We are a bit in the weeds this week, but I will write asap! She’s doing pretty well, and we are all hanging in …
a.l.l. of us

Allowing Abundance in

Hi Friends,

Thanks for your patience; this week has been incredibly busy!  There’s so much good stuff happening that I’m trying to be conscious of allowing it in, not questioning it, or feeling overwhelmed by it.  After the year we’ve had, this is not an easy task.  I’ve been waiting for the other shoe to drop more than I’ve been allowing  abundance in!  Yet, that is what I aim to do.

I’ll start with no news is good news on Lulu.  She’s the squishiest, cutest and chubbiest she’s ever been, and a whopping 42 lbs. after this week of steroids!  She’s still craving foods like a pregnant woman in her third trimester, but to see her actually eat more than a couple of bites of something is just remarkable.  Her blood counts are next to nothing this week, so she is delayed for the last big-daddy round of chemo.  She might need a blood transfusion or platelets this week, but that feels like a mere pause at a pedestrian crossing compared to the sadistic marathon we’ve been on.  She’s feeling good, drawing rainbows and enjoying the summer!  I too, love summer so much; it makes me feel like a kid again.  Riding bikes, sitting on the porch, having water balloon fights in the backyard … it’s all so filled with life.  Max is excited too, although he’s melancholy over leaving his elementary school.  Well, he’s genuinely forlorn, actually.  But how amazing to love school so much at his age that he doesn’t want it to end?  I don’t recall having that same feeling … do you?

Realizing this will likely sound trivial, I must tell you that Lulu tied her own shoe for the first time.  I think parents with children who are life-threateningly ill subconsciously stop looking at things like comparison charts, growth charts, and expected milestones.  Every time I get one of those “Your Preschooler this Week” emails, I delete it instantly, for fear she may not meet some silly standard listed there.  Before treatment begins, the doctors give you a list miles long of the physical, mental and behavioral problems that can happen due to chemotherapy.  As you sign the documents declaring your understanding of the risks, you force your eyes to blur the words together on the page while holding your breath.  The normal expectations just don’t matter now; all that matters is that she’s healthy.  So, it took me by surprise when she tied that shoe, and how beautifully on par it was.  She was giddy with delight over her accomplishment and both Daddy and Mommy were there to share in that joy with her.

Things with the rest of us have been pretty good too.  After deciding not to work for these 7 months, the perfect opportunity seemed to land in my lap.  I’m doing some freelance consulting, mostly from home.  I could tell you more but then I’d have to shoot you, as I signed a non-disclose J.  Suffice it to say, I’ve had to wake up that fat lazy hamster who’s been couch-potatoin’ it up in my brain.  He didn’t get any warm-up either, just had to clear the cobwebs off his wheel and start sprinting baby!  He’s hanging in there though, after a little WD-40 and some unconditional love.   It’s been a little stressful, but also a welcome challenge, and I think good for Lulu to see me doing something that’s normal to her, too.  Jimmy’s work has thankfully been flowing in like a raging river, and he’s using all his great stamina to keep being the rockstar he is.  He’ll be travelling again very soon, which brings me to the good news that my dad is staying with us for a while!  We’re busy turning our bedroom-turned-closet back into a bedroom for him so he can have his own space.  We are all glad to have him here.

But wait, there’s MORE INCREDIBLE NEWS!  Lulu and we were chosen to do a photo shoot for an international drug company.  Apparently, quite a few caregivers from the hospital referred us to the company that makes one of the life-saving drugs Lulu is on.  This was a real compliment since they wanted a family who was still (mostly) thriving during this ordeal.  (We just found out the divorce rate for a family going through this is 70 percent!!!).  Ironically, the ad is for Erwinase, the drug I wrote about recently that requires shots in Lu’s legs.  They flew in a crew from L.A., and we did a photo shoot at the lakefront, and in our house (OMG, yes, we had to deep clean for that!)  We didn’t know how the day would go with Lu weaning off the effects of the steroids, and being a wee 5 years old.  Well, that little hambone tore it up!  The shoot was supposed to be 3 hours for two locations and ended up being 5.5 hours!  She was eating up every single minute, and you would have thought she’d been doing this for years.  The crew was amazing, kind, and absolutely fell in love with our little princess, hence the extra pictures.  Jimmy, Max, Grandpa and I ended up in some shots too, and had to sign releases.  Lulu told me how happy she was, and that she had “awlways, AWLWAYS” wanted to do something like this.  She had, in fact, been begging me to let her model before she was diagnosed, and I was considering giving in.  It was wonderful to see her celebrated, bald-headed and all, in this way.  Apparently, each person in each of their campaigns is given a word that describes them.  The word for Lulu: “Spirited”…  a perfect fit!  I’ll be sure to put the ad in the blog when it comes out.

So yes, we are allowing abundance in this week, or for however long it is here.  And I’m trying not to feel a sort of survivor’s guilt during this time.  Our friends Kate and Bo are still struggling and we think of them every day along with others at the hospital.  Kate has made huge improvements and is receiving mostly homecare now, but it’s still extremely difficult, and exhausting for her and her parents.  Bo has had some setbacks, but is in line for a bone marrow transplant now and luckily only had to endure one big round of chemo to knock his counts out before being eligible.  I know they’re happy when any of us are doing well, just as we are for them, so I hang on to that.  We go to visit the H.O.T. unit every chance we get, and are donating the proceeds from the photo shoot to that unit.  Please continue to keep all those kids in your thoughts and send them some good juju when you can.

Jimmy and I recently got to go on an impromptu afternoon date, on what was pretty much the perfect day.  As we drank a mojito, ate delicious food and sat in the sun, we felt so grateful.  Grateful for our family, and for you, our friends (even virtual).  Grateful for the beautiful day and the love that surrounds us.  Grateful for this moment in time, right here, right now.  Thank you for not forgetting us, even though life is full and time has marched on.  We welcome and appreciate your love … and abundance!

a.l.l of us

Radio interview with Lulu

Many of you have asked to hear the recording Lulu and my husband did for Children’s Hospital, so here it is in all it’s beauty.  I’m SO proud of them both.  Lulu’s voice dapples sunlight throughout, and shines ever-so-brightly in the end. 
Thank you for taking the time to listen, and to our dear friend Tabb for getting this recording to us.


Presenting …. The Amaaazing Lulu!

Lulu.  She’s amazing to me.  She’s been hanging so tough this last couple of weeks.  Although this round has been better than expected so far, it hasn’t been easy on a little 5-year old.  She’s taught me so many things throughout this process.  I’ve learned through her wise words, as well as by what I’ve had to teach her to help her get through this ordeal.

Some of my favorite Lulu quotes of the week seem to develop out of the mist.  She might be sitting in the car, or going for a ride in her stroller, or waiting in the hospital, but they are always preceded by a soft silence:

“Mama, We’re all made differently, I’m supposed to look just like this.  Not like anyone else.  Just like this (smiles). ‘Cause this is how I was made.”

“You know what would be the worst villain ever?  A flower-making villain who shoots flowers out of a gun.  Now that would be lame.  The good guys would be, like, ‘really Dude?”

“Mama, just because we can’t see something doesn’t mean it’s not real.  We can’t see air or the wind, and that’s real.  We can’t see God, but that’s real too.”

“You know what?  Girls can rap too.”

Every week she’s had to endure painful shots in her legs, two at a time, 3 days/week.  Because she had a horrible allergic reaction to one of the chemo’s a while back, she must endure 24 shots of a similar, but different strain of chemotherapy.  Can you imagine being 5 years old and having 3-4 nurses come in, dressed in full chemo gear, holding you down and poking two 2” needles into your legs simultaneously?

So … we’ve been working hard on self-talk.  We have to put numbing cream on the spots 1-2 hours before injection, which gives plenty of time for the total fear and anxiety to build up to near hysteria.   Therefore, we’ve developed an inner dialogue worthy of a scene from The Help:  “I am brave, I am strong, I am tough, I am LULU!”  I whisper it in her ear over and over again, until she starts breathing more deeply.  I’ve taught her about her “brave spot”, which she says is sometimes hiding in her toe, and one time it was even hiding in her bum!  I physically roll the brave spot all the way back up into her heart and have her hold it there. We talk about how many times she will have to endure this, how amazing she is, and what a beautiful strong woman this is going to shape her into being.  She really understands and tries mightily to overcome her fears.

The nurses are as kind, gentle and patient as they can possibly be, and allow Lulu to have her one bit of control over the situation, which is allowing her to count to 5 before they give the shots.  She makes them promise over and over again to do it quickly pweeze, and put the band-aids on wright away.  Pweeeeze Pweeeze! After a few rounds of that, she gathers herself, closes her eyes and says “o.k., o.k. I’m doing it.  I’m doing it.  O.K.  She likes to watch everything that happens, so she chooses one of her legs to look at, then, as fast as humanly possible, she says “onetwofreefourfive!”  The injections come, and even with the numbing cream, the chemo going into her thighs burns.  She screams operatically, and squeezes our thumbs as hard as she can.  She really, really likes both Jimmy and I to be there, and the days Jimmy can’t be there are always harder.  After a few minutes she recovers, and always says “That was the ONLY storm for today, right?  Now it’s rainbows for the rest of the day! RIGHT?”  Yep.  Rainbows the rest of the day, I promise honey.   We have two weeks off from these, then two more weeks on.  Good grief.

Other than the shots, Lu’s been tolerating her treatment extremely well!  The steroids haven’t been nearly as bad as the first round, and I think we’re trying to see the lighter side of her dramatics as well.  Just don’t laugh at her when she’s mad!  Ooh, it’s so hard, she’s so funny!!! Everything is theatrical. “NO, MAX IS BUUUUGGGING MEEEEE!!”  “WHY won’t Max PWAY WIFF ME?!? I WUUUUV HIM!!!”  These sentences could be said within 5 minutes of each other.  You get the picture.

She’s been nauseous a few days, but is STILL EATING!  I’m afraid to even write this down, that I might jinx it somehow, but she is OFF OF HER FEEDING TUBE!!!  Oh, it’s glorious to see those two little soft cheeks again.  She looks so beautiful, and is overjoyed at getting that darned tube out of her nose and throat.  We’re praying she doesn’t need it again, but the docs know it’s a possibility if she doesn’t eat enough, or starts vomiting.  Her counts have just begun bottoming out and the hardest drugs begin next week, but one day at a time …  I know this little girl can do anything she sets her mind to.  She is truly one of the most determined people I’ve ever known.  If she will only use her powers for good, how amazing she will be in the world!

Oh, and know that Lulu fully realizes how special she is, as she demonstrated the other day:

“Do you want to see that I am special?” (gets up from her chair, turns around with her back to us, then whips her head around) “Look!!!  I can see my own butt!”

It’s been a rainbow-liscious week, which wrapped up with my big boy playing the lead in The Jungle Book, and my hubby and baby girl going live on the radio.  Max was adorable in his little red loincloth and fake-bake.  He was bubbling over about it, and told me that if he had a second middle name, it would be Actor.  A ham is born.  Daddy and Lulu were on the radio yesterday to raise money for Children’s Hospital.  To say I’m proud of them doesn’t begin to cover it.  All got to listen to my articulate, obviously moved husband and the sweetest voice you’ve ever heard from Lulu, who knowingly wraps things up beautifully in the end of the segment.


a.l.l. of us

Unexpected Kudos

Hello Friends,

As I was responding to the comments readers had made on my blog this week, I was delighted and surprised to find this:

“It’s an odd little community of bloggers–those of us on-line writing our mind and heart. And then to stumble upon you and the Grace and courage conveyed … remarkable. I read your blog, because it breaks open my heart each time I do and it reminds me what truly matters in life. As Billy Joel once sang “I have been a fool for lesser things.” I nominated you for the Very Inspiring Blogger Award.  I want you to know that you and Lulu have a wide touch…beyond family and friends…into the internet ethers, inspiring and blessing people like me who bear witness to this sacred dance you do with your daughter. You and Lulu are in my heart and I am grateful to follow your story and to bear witness to its awful tenderness.”  

Stephanie Raffelock  http://callingoftheheart.wordpress.com/


Wow.  What a wonderful surprise.  I’d like to thank Stephanie for nominating me for the Very Inspiring Blogger Award.  I didn’t know if my blog would really reach people beyond the cancer story … I just hoped that it would.  The award is truly lovely, but the words from Stephanie are the real trophy to me.  Her writing is soothing yet inspiring, and reminiscent of my mother’s ideology.  I’m so grateful that she found me, and that I found her writing.  I hope you will visit her site often:  www.callingoftheheart.com

To receive this award, I must list 7 interesting things about me, and tell you about some bloggers that inspire me, so here ya go!:

7 Things:

1.  I used to be an opera singer.

2.  I (very) occasionally snort when I laugh.

3.  Between singing jobs, I once did a national tour where I played a dancing Sesame Street-type character.  The costumes were 40lbs, and difficult to see out of.  At one of the shows, I fell off the stage onto the unsuspecting first row of children.  No one was hurt in this horrifying incident :-).

4.  I grew up painfully shy, and although you wouldn’t guess it if you meet me, I still struggle with it.  Now it just comes out as intermittent moments of social awkwardness. Nice, huh?

5.  Mad Men and Smash are my drugs of choice.  I’m totally addicted.  I even dressed up as Joan for Halloween.   I stuffed a padded size F bra into a tight red dress.  Men still stopped me to ask if they were real.    Oy.

6.  I rowed crew for a summer 3 years ago.  I was in the best shape of my life and always long to get back to it.  I loved the peacefulness of being on the water and the camaraderie of the women.  Of course, there was that time this duck took a paddle to the head … He came out of nowhere, I swear!

7.  Having a daughter with cancer has almost wholly cured me of the disease to please.  I find it easier to speak my mind, write, and say no.

Although the rules suggest I nominate 7 bloggers, these days I don’t truthfully keep up with 7.  With that in mind, here are my 4 nominations:

Fancy Feet:  www.heidicave.com

A tragedy turned triumph led this woman to share her message of hope, love and courage with us.  She is currently publishing her first book, based on her blog.

An Inch of Gray: www.aninchofgray.blogspot.com

Thoughtful and self-depracating, Anna See takes us on a visceral ride through her life.

Chase your bliss: www.toussaintmorrison.blogspot.com

If you read my entry “Seeing is Believing”, you will know why I am nominating Toussaint.  His young, raw talent is blossoming into a strong voice that will have an impact on this world.

Glamaross:  www.glamaross.wordpress.com

Sharie Ross found me by chance over the worldwide webs.  I just like her.  She combines glamour with reality and humanity.  She reminds me of the fashion industry I recently worked in, and that motherhood and glamour are not independent of each other.  She is also a cancer survivor, and therefore, in the club.

Thank you to these, and other bloggers whom I have yet to discover.  I’m simply a newborn to this world, but feel excited, connected and supported by it already.  As the award states, you are all “keeping the blogosphere a beautiful place”.


T. Marie

Dun Dun Duuuuuhnnnn . . . Delayed intensification.

We just began the toughest round of chemo for Lulu yesterday.  There’s a reason for the name:  Delayed Intensification.  It’s just loaded with all the ingredients for an intense drama including 9 kinds of chemo, and, ooh our favorite thing:  steroids!!!  I don’t know how many of you have a spirited 5-year-old girl, or have met one, but ours walks the razor’s edge between charming and bratty on a daily basis.   She’s a creative force, so full of life it seems impossible that it could be contained in this 35 lb. package.  She also has the wit of a teenager; including the sarcasm.  Even the word Mom can be delivered with more varied intention and meanings than previously thought possible.  Depending when you meet her, she will sweep you off your feet and climb into your heart in the most charming, playful and engaging way, or drive you crazy with endless chattering and obnoxious demands for attention.  So … let’s put this on steroids!  Based on our last experience, I will be calling often, tag-teaming with Jimmy and Grandpa if he’s still here, telling lots of stories-that-will-be-funny-later, and planning my occasional escapes to gather myself enough to go back into battle.

That’s the easy part.  The 9 kinds of chemo are more challenging.  I’ve been running through a lot of emotions based around this leg of treatment.  I’m hopeful since it’s our last giant hurdle to cross before starting maintenance for 2 years, and it feels like there might actually be a light at the end of the tunnel.  The hold-your-breath scary part is there are no guarantees.  This feeling of unsure footing has been amplified by recent events.  We made a few friends on the H.O.T. (high risk) unit during our long stays at the hospital.  I was just thinking about how well everyone was doing, and how lucky we all are.  It starts to feel like you’re having coffee or beers with your friends, and forget you have children who are all literally fighting for their lives.  I told you about Bo, who had the rug pulled out from under him and his family when his leukemia came back.  He and his mom are at the hospital again, finding their strength and gearing up to fight once more.  We have another friend who is a mere couple of weeks ahead of Lulu.  She’s almost 4, and one of the cutest things I’ve ever met with huge blue eyes surrounded by thick wings of black lashes.  She and Lulu hit it off immediately.  After doing as well as our little one, she is suddenly in the fight of her life.  The drugs, not the disease, are tearing her tiny body up.  After starting delayed intensification, the toxic drugs broke down her intestinal wall, allowing bacteria to enter causing typhlitis, and her lungs have filled with fluid from an unknown origin.  She is on a ventilator in ICU, just had surgery and I can’t stop crying for her.  I’m so worried, and hope she finds every bit of little girl magic and chutzpah to pull through.  I find myself wanting to hate these drugs with every ounce of my being, but I can’t.  If they don’t kill her, they will save her (and my daughter’s) life.

I haven’t really asked the big WHY question too much during this time.  I am now.  I know both of these families have as many people loving and praying and thinking of them as we do.  I’m not overly religious, but I do believe in a God, a force and an energy that created everything.  I’ve heard, “this is God’s will” and I just don’t buy it.  I don’t think God would ever choose to take one child’s life, and save another.  It can’t be.  Can it?  I’m not losing faith, I’m just wondering.  Maybe God doesn’t really work on that level?  Maybe we were all just given free will and we’ve messed up this earth so much that we are creating all these diseases of the body, and mind.  Our food and environment polluted … Cancer; rampant, cure; toxic.

I’m feeling pissed off, confused, scared yet hopeful.  Maybe it’s been left in our hands with God to guide us, not fix it for us.  If so, we need to change it.  Quickly.  We need to change the way we eat, purchase, process, work, live.  We need to start wherever we can, in big and small ways.  We must be part of the positive change, and not the toxic buildup.  We need to stop filling our minds up with entertainment that thrives on hate, food that poisons us, work that kills our souls and our earth.   I certainly don’t have all the answers and solutions, but I hope this will start a conversation.  Maybe if we begin with ourselves, we can create some peace within that can be shared with all.

Please send prayers, good juju or whatever you’ve got to Bo, Kate, Lulu and everyone at Children’s, especially the HOT unit.

Thank you,

a.l.l. of us

Normal is underrated

Normal.  It’s a word I’ve never really identified with.  Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or tango with Average, and can hardly utter the word… Ugh… Mediocre.  Routine? – the bane of my existence, and solid was a word I’d like to hear only in reference to my backside.  I always pictured myself living a more glamorous existence, chasing the tail of life, and filling it up with adventure.  I’ve discovered, however, that normal is relative, and certainly not bad.  In fact, I would even say I now crave normal.

This past week was surprisingly just that, with a daughter who was functioning as a wonderfully average five-year old.  Lulu is off of chemotherapy for almost two weeks, and our regular-ish little girl has reemerged.  What most people find to be ordinary, we now find extraordinary.  Her fighter blood counts were so high we were able to do crazy things like go to the grocery store!  We got ice cream one day, and went to a park – WITH other children!  We sat at the dinner table together and shared a meal where Lulu actually ATE!  It was only yogurt and one bite of chicken, but we could have been dining at The Four Seasons, it felt so good.  I had a business meeting that I’m not sure how it went, but who cares!  It was a normal thing to do, something I haven’t done in 6 months.  I met a good friend who is going through a hard time and I was able to listen to someone else’s problems. Wonderful! My dad is in town and we actually went out on not one, but two dates!  I mean, come on, this is pure gluttony.

The icing on the cake was a visit to Lulu’s K4 class.  She had only attended for 2 months before her diagnosis, but her school has been surrounding us with love ever since.  When we entered the classroom, a hush fell over the room.  The kids were lovingly and cautiously instructed not to touch her due to exposing her to germs.  We hadn’t been able to tell the teachers of her improved status for this week.  Lulu was beyond excited, bouncing up and down, overwhelmed into smiling silence and eyes so happy they squeezed almost shut.  Gingerly, the little ones approached.  Jimmy, my dad and I watched from a distance, letting go of any control over the situation.  One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”.  Wow, thank you God.  The kids were curious, but completely respectful.  I wanted to grab each one of them and squeeze their little cheeks off, then send a letter to their parents thanking them for raising such gems.  Her principle read a story to her class as Jimmy and I held hands, being sure to keep the other hand free to wipe the tears that were escaping rapidly.

Yes, Normal is relative. I remember when Lulu had an undiagnosed ruptured appendix on top of her leukemia, which caused her excruciating pain and multiple surgeries.  There were times when we thought to ourselves: can’t she just have normal shitty cancer?   Bo, a boy we met in the hospital during this time, is one of the sweetest, most kind-hearted boys I’ve ever met.  He was recently given his walking papers; remission.   He rang the bell at clinic, meaning his fight is over, he’s won, and his new normal can finally begin.  We felt lucky to be there that day.  He had adopted Lulu when she was at her worst.  Bo saw the little fighter in her, and just took to her, even when she was too sick to even know he was there.  He’s been her big brother from down the hall, making her little presents and always keeping her in his prayers.  Bo just celebrated his 13th birthday yesterday, and his present?  He found out his leukemia is back.  Please pray for him and his family. Normal has now moved into divine.

-and, Hey Normal, we know we only have you committed for two more days, but please stay for a while… and visit Children’s often.

A.L.L. of Us

Seeing is believing

I have two crazy stories to tell you this week.  Crazy good, with crazy-amazing moments …  The first story came out of the blue:  I have to take Lulu into Children’s for bloodwork weekly, and put numbing cream on the insides of both of her arms, to give them a better shot at finding her teeny tiny veins. It’s always traumatic, no matter how much cream and self-talk I teach her.  As we sat in the waiting room last week we were, as usual, surrounded by other children with their parents.  You can tell immediately which are which; the sick from the healthy. Sometimes it’s obvious in the children themselves, but you can always tell by their parents.  Some just cry outwardly, others simply glaze over, lost in their own pain, overwhelm or denial.  The healthy-child parents give these sad, pitiful looks to the rest of us, or avoid eye contact completely.

A robust little girl came over and started speaking really obnoxiously to Lulu.  She kept asking her about her feeding tube, why her hair was gone, poking at her, your basic nightmare.  She wouldn’t give up, and her mom was M.I.A.  She kept trying to touch Lu’s feeding tube, and at one point, she tried to grab it.  Lu was so calm about all of this, but I had a secret desire to take this small child and do more than talk to her!  Down Mama Lion.  Of course, I didn’t act on this fleeting thought, her mom returned and we had a peaceful few moments before going in for the poke.

I started reading a friend’s Caring Bridge, filled with sadness for her, and so much empathy.  I didn’t have time to finish reading it before our names were called, and I brought that energy silently into the lab room.  Lulu started sniffling immediately upon entering, and I sat her in my lap as the nurse came over to do the deed.  The techs there are usually very disconnected,  getting the job done, ignoring all the pain/fear/screaming/hysteria they deal with from these little tykes.  How else could they get through the day?  But our nurse was different, completely present.  As Lulu was obviously terrified, yet trying her very best to be brave, the nurse seemed moved.  She kept saying, “I just feel awful, I just don’t want to do this to her.  I don’t know what it is, but I just don’t want to do this.  I’ve never felt this badly before”.  I could tell she was sincere.  It was as if she could tell how much worse Lulu’s been through, how much worse she has yet to endure, and how this little poke was just one too many insults to her little body.  The blood was drawn, the kleenex came out and as I wiped the rivers of tears and snot from Lu’s face I looked up to see the nurse who also needed a tissue.  We exchanged a look that reached beyond the moment, when you really see someone.  She took Lu by the hands and apologized to her profusely, looking her straight in the eyes.  She apologized over and over again in a heart-wrenchingly touching and surprising way.   As she looked up at me, eyes still brimming with tears, she said she’s been doing this for 24 years and never wants to do it again.  She’s never been so upset, and just doesn’t ever want to poke another child again.  Ever.  I thanked her for not being numb to her job, to us.  I haven’t seen her there since.

The other story came just as unexpectedly.  As you know, Lu and I have been largely sequestered for months, due to low blood counts and susceptibility.  She had been asking me for weeks to go to Alterra, our favorite coffee shop, so she could get hot chocolate.  It seemed like such a wonderfully normal thing to do.  Finally, I just said “let’s do it!”. I actually showered and put a touch of makeup on, threw on some jeans with my favorite jacket and off we went.  She was bubbling with excitement as we stood in line.  The place was packed and I immediately started doubting my decision.  There was no turning back now, though.  We got our goodies and were forced to sit at the, oh no, COMMUNITY table!  Ugh.  Germs everywhere! Ok, let’s just make this snappy and get outta here.

But Lu was actually eating something, her favorite poppyseed bread, a sip of hot chocolate.  Ok, we can stay a couple minutes.  The guy sitting next to her says hello, and Lulu is having a ball playing as I plan an escape-route in my head.  There’s something about this guy next to her, he keeps chiming in on our conversation, wanting to engage somehow.  This is already atypical for us, as we more often encounter the opposite reaction from strangers.  He looks like the usual eastsider:  young, plaid shirt and jeans, but there’s something more there …  Lu must have sensed it too, and after chewing on the broken-off piece of bread for a while, she turns around to the young man and says “do you want some?”  She reaches out, offering this obviously goobed-on-by-sick-girl crumb and the guy takes it, thanking her, and EATS IT!!!  He gave us a beautiful gift in this small but mighty gesture.  My eyes connected with his and there was a strong energetic moment of what I’ll again call “seeing” past our physical selves.  We exchanged first names, and although I wished we could talk more, I have to get Lulu out of there.

The encounter really stuck with me.  I couldn’t shake it.  I just had this strong intuition about it.  I decided on a whim to google him.  His first name was Toussaint and I knew where he was from, how hard could it be?  It proved to be incredibly easy, as if fate had stepped in once again.  I found him within a few minutes.  He had a band, and a blog.  I stopped there.  I knew he would write about us, about Lulu.  I don’t know how, but I just knew.   I started checking the blog every few days until … There it was.  The entry was called “Coffee and Chemo”. Here is the link to the full story: http://www.toussaintmorrison.blogspot.com/2012/04/coffee-chemo.html . You’ll chuckle at his misinterpretation of me (“Jesse”), but I can understand it from his point of view.  He was, however, spot on in his impression of Lulu.  I ended up emailing him, explaining my preoccupation, thanking him, and introducing my family to him and letting him know that Lulu was doing well.  It turns out that his mother works in oncology and had been battling some health issues of her own.  He was very generous in his email, and I think we will forge some kind of friendship from this.  He also writes beautifully, and I’d like to invite you to follow his blog: http://toussaintmorrison.blogspot.com/

I still can’t get over it.  How powerful a moment can be, a small gesture, a little empathy.  How connected we all are, how powerful it is to really SEE someone, and be seen.  Isn’t that what all of us really want and need in this life?

Please reply to this and share your thoughts, or a time when you’ve felt seen.

T. Marie and a.l.l of us


I am with Lulu at Children’s this week for more treatment. She’s been the life of the party here, and hosted her own rainbow fiesta at rounds this a.m. One of our favorite docs brought supplies for her to decorate her room in a rainbow theme, and she made each doctor a rainbow drawing. She also gave away bead necklaces and leis. It was so cute and, although the toughest round is still ahead, it reminded me how very far we’ve come in 6 months.

Hubby Jimmy’s gone for 3 days this time, so he will get back tomorrow when we hope to be released. I have friends stopping by with dinner each night we are in the hospital, which helps tremendously in passing the time. If everything continues to go well for Lulu, we are planning a little family camping getaway this weekend. Cabin camping, no roughing it for us right now!

Max has become an adopted family member in some of our friends’ homes. We are eternally grateful for their generosity. He’s still very quiet about what’s happening with his sister, and I sometimes worry that he’s stuffing it all. – but he surprised and touched me last week when he told me there was a song that always reminded him of Lulu. He quoted some of the lyrics which proved just how deeply he understands. I bought and played the song on the spot. It is called “Rise” :

I used to be afraid of giving up
The road was just too tough
Out here on my own
My path was so alone

But now I see clearly
Everything within me
Is reaching out to the sky
I can see the world with open eyes

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

That’s what left your head up to the sky
And find yourself asking why?
Never see them out at night
With the hardships of life

But faith is where my heart is
Let energy replace my doubts
Won’t my trials get the best of me
I’m marching forward towards my destiny

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

You can try to hurt me, doubt me and desert me
I feel the will of kings, with my mind I’ll build the sea
And you know a tree will grow and take me in
To safety’s arms, I will descend

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

Yeah, I was tearing up too. Jimmy listened with us, and it was one of those moments when our bodies were pulled powerfully to the earth, and we were completely grounded and accepting.

I’m feeling, dare I say it … Hopeful? Please knock on wood as you read this! I think hope is the difference between thriving and existing. In any circumstance.

a.l.l of us

Tootsies and Trips

This morning began with foot in mouth. I’m not speaking figuratively; said something stupid, embarrassed myself or someone else … I’m talking 5 tiny pink painted toenails inserted ever-so-gently inside Mommy’s drooling, agape craw. No, there was no adorable little princess sock protecting me, no pink tights smelling of fabric softener. Just skin on skin contact featuring upside-down duckling-headed five-year-old and finally sleeping mama. Blech! Ptu-Ptu!!! That’s it. We’ve gotta get this girl back into her own bed! I must say, it was the best night’s sleep I’ve had in a long time, much needed after the events of this week and I finally feel motivated to do something today. Perhaps it will be getting Lulu’s little-girl bed out of the attic again, since she can’t maneuver her big-girl bed with her feeding tube. Or maybe I’ll have Jimmy do that while I go to the gym?.

Yes, hubby’s back after another trip. He was only gone 3 days this time, but of course, everything seems to happen when he’s away. The night before last, I dragged myself up the stairs at 11:30 after taking a benadryl, hoping for some deep Z’s. I crawled into bed, next to, HEY, there are TWO kids in my bed! Oh well, there’s room without Jimmy in the king-size (yes, I know it’s an issue and we need to work on this. Don’t call Dr. Phil). I pulled the warm covers up. Really warm covers. Too warm. Shit, Lulu’s got a fever. Shit shit shit! It’s over 101 which means I have to take her in to E.R. Panic. Can’t leave Max here alone, or can I? He’s 9. He’ll sleep. What if he doesn’t? What if he wakes up and starts freaking out. Don’t want to take him to E.R. at midnight and mess up his whole school day tomorrow, let alone have him go through the trauma of being there with screaming Lulu. Who can I call this late? No answer from Jimmy. Call BF in Minneapolis. Ok, I’m not thinking clearly, but she has 2 kids who are older than mine and will know what to do. Sure enough, she says leave him a note, he’s ok to stay, but might not remember talking to me and call a neighbor. I didn’t want to do that to my neighbor, but that was the permission I needed to make the call. Ring. She was so gracious, came right over and slept on the couch.

Lulu and I got into the car and she asked if she’d have to get poked. Of course she would, and without numbing cream, her port would have to be painfully accessed. “I’m not sure baby. I’ll ask when we get there”. She’s still freaking. As I arrive carrying her through the doors on the way to her room, I hear “T, is that you? You look beautiful!”. This is the weirdest thing I can ever imagine hearing right now. Me, in the hospital, stressed-out bed-headed in sweats juxtaposed with this statement. I turn to see a long lost dear friend from high school whom I’ve been trying to find for years. “Laura?” Wow, how nuts is that!?! It turns out she had taken care of Lulu the last time Jimmy brought her to E.R. and that they had clicked instantly. He had spoken to me of the great nurse they’d had that night as well. I long to speak with her and catch up, but between the docs asking questions (yes, she has A.L.L. em, yes she’s on some medications…), Lulu’s screaming and me fighting the effects of the benadryl, all is lost. She leaves me her info and we promise to get together soon. Lulu gets her blood drawn, is poked and prodded, given antibiotics and after 4 hours we are released. She likely has a cold.

Aaah, just another day in Cancerland.

A.L.L. Of Us


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