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

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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

A Little Rain

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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.

Love,

A.L.L. of US

What if … ?

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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!)

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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.

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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.

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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.

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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.

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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.

Love,

a.l.l. of us

 IMG_2322 Oh, Mom …

Silver Lining (plus recording of Lulu singing)

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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!”

http://chirb.it/g42rDv LULU SINGING CHRISTMAS IS A TIME FOR LOVE

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)

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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No news is GREAT news!

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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

-Eat

-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”.

Indeed.

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

Update and Lemon-Aid tomorrow

Hello,

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:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HWVDDTBWNFYDE

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

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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.

Love,

a.l.l. of us