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.

Love,

A.l.l. Of Us

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Miracle Marathon video and letter

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http://fox6now.com/2014/05/22/find-out-how-you-can-help-childrens-hospital-of-wisconsin/

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

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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.  

http://blog.chw.org/2014/05/lulu-story-miracle-marathon/

With love and happiness,

a.l.l. of us

Full Circle

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(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!!!

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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!!!
Enjoy:

https://www.youtube.com/watch?v=J7K6NIEPKtg
Please keep us in your thoughts as Lulu goes in for her last surgery Tuesday.

Gratefully,
A.l.l. Of Us

Nearing the Finish Line

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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!!!

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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 …

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with love,

a.l.l. of us

Counting Down!

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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!

Love,

a.l.l. of us

Quick update

 

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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

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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.

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(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 …

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(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.

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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

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