Rainbows, Grit, and Bird Poop

As I try to take a quiet moment to write this update, the "music" of this hospital room tells her story. The blood pressure cuff squeezing and the information relayed chimes every few minutes as our girl is having some blood pressure issues today due to the cocktail of medications she has been given this round. She momentarily speaks nonsense into thin air with her eyes closed and sometimes open, yet she is not awake or aware, as another side effect from the medications making her have lucid dreams and temporary delirium. The periodic pumping from her IV pole has a certain rhythm to it as it helps deliver strong immunotherapy medications which help her immune system seek out and destroy cancer cells, along with the morphine pumping through her veins in order to combat the nerve pain associated. I can hear some chatter in the hallway from the staff. This melody of sorts is the "music" Charlotte has known for all she can remember. It occurred to Brian and I as we drove in that we have be doing this "dance", in and out of hospital stays now for over 15 months! And today, when Charlotte went from happy go lucky "I'm painting my whole family a picture" sweetie pie in the playroom, to "mommy my belly hurts and I feel awful" little girl crawling up in my arms, with her pudgy cheeks pressed against my heart and that almost confused look on her face like "what happened? I felt fine a moment ago", I started feeling all the exhaustion start to sink in. Her fever then spiked and she needed to push her PCA button to give herself an extra shot of morphine, and that toy she wanted to play with mommy so badly with was tossed aside while her Minnie and paci took its place to give her comfort. To say Brian and I are just plain tired of watching her go through all of this is an understatement.

But when I close my eyes and stop thinking too much, and I let simplicity and matter of factedness (is that a word?!?) wash over me, we have NINE HOSPITAL DAYS LEFT and then she has finished the hospital portion of her protocol!! We are so close! And maybe that is part of my feelings of just being done. We are close enough to taste the finish line, and that sweetness isn't getting here fast enough. But it's coming. It's coming. It's coming very soon.

Some have asked what is the plan for when Charlotte finishes Immunotherapy. July will mark her last inpatient treatment. Her final 6th round of Immunotherapy is at home medication she will finish in early September. Our hope is after Immunotherapy, her scans will still show she is still clear with no evidence of disease. If so, we have a choice:

1. Do nothing and be done with treatment. She would have scans every 3 months for several years with the hopes her cancer is gone and no relapse. So we could "wait and see".

2. Or we could take her to Sloan Kettering Memorial in NYC for their Neuroblastoma Vaccine trial. They've been doing a vaccine for 6 years and it's in its second phase now being offered to kids that achieve remission, like Charlotte. She would just need to go up periodically throughout the year to receive the shot thereand then she'd come back home. Live life. Do her thing. We have been learning about and just had a phone consult with Dr.Kushner there this week. The hope is this will become standard course treatment for long term coverage in the maintenance period but it's still a trial. It's goals is to teach Charlotte's immune system to find Neuroblastoma cells (by seeking out receptor markers) and kill them. In essence, it's life long coverage against any cells left that would metastasize and become a tumor. It has no short term side effects other then site soreness and low toxicity, although long term studies are still ongoing.

It's ultimately our decision although we are hoping to consult with our Oncologists here at Duke before we make the decision. Charlotte's cancer has a high relapse rate with no known consensus for what to do for relapse and really no known cure for it. Therefore, we are leaning towards throwing everything we can at this beast the first go around which means our hearts are leaning towards the vaccine trial, but we have not made the final decision yet. If we do, she would go u to New York sometime in late September/early October to receive her first dose, pending clear scans.

To have this option is a true gift. It would mean Charlotte has officially done it. That she's achieved complete remission. When I think about that moment, from where she started, I know all this "music" I am hearing while lying in this small, dark hospital room is truly the sounds of her being given a chance. She has a chance to do great things because she has already done great things. And God's love and grace continues to transform this entire experience for us. When I'm frustrated, like I was last Friday when we JUST got Charlotte home after a week at The Ronald MacDonald House while getting 96 hrs of out patient infusions only to have to put her back in the car to go back to Duke because she ended up with chills and fever and diarrhea, God has this mysterious way of helping me feel his peace. Of helping us take a deep breath and surrender our worries and frustrations. Brian and I pit on a brace face in front of Charlotte, but privately we felt pushed to our limit and I started to cry out of frustration. We just got home and unpacked and watched her happily play with her siblings! I didn't want to drive back there and sit in the hospital. They told me over the phone there was a good chance she'd be admitted. As I drove her in while Brian held down the fort at home with our other kids, I looked to the sky for a rainbow. It had stormed so hard I though maybe? " I could use a rainbow", I thought. But then Charlotte began a dialogue from the back seat that snapped me out of my narrow viewpoint of disappointment. She starting talking about the bird poop that remained on her car window even after we tried to wash it off, even after is rained so hard on our way home from the hospital earlier that afternoon. She cracked me up and my mood instantly lightened. That was God. We sat for several more hours that day while she was evaluated and given some fluids and IV medications. But when Charlotte was given her walking papers to go home she happily skipped towards the elevator only to have to step over a beautiful little rainbow shining right there on the floor in front of us. A cloud opened up about half way home and I thought "Man, this is the second time I've had to drive through this storm!" It was true white knuckle summertime NC storm driving. But Charlotte observed the bird poop was indeed finally being washed away. We sang the whole way home.

And she got to be home the rest of Fathers Day weekend. Unlike last year when Charlotte was hospitalized, Brian was able to have all 3 kids and I, along with his dad Doug (aka Pops) and his wife Joanne (aka Mimi), home all together for most of Father's Day (until we were admitted late afternoon). This man, who puts his family first every day without fail, deserved to be celebrated. We are so lucky to have and feel his love every single day. And together, we are going to get our family through this. We will keep following the rainbows as we keep moving and keep going, healing Charlotte, and witnessing God's amazing love for us all. He has given us so many gifts like Grit that comes from the strength he is teaching us, moments of light hearted laughter and peace like I found from Charlotte's bewilderment at some bird poop, and rainbows of faith, hope and love.

Thank you God for grit, rainbows, and bird poop.