Charlotte's Journey

Home! Charlotte teared up in Brian’s arms and again when she got home. This little girl feels . Truly feels. There is No place like home. She’ll have a 3 week break home and then back to NY for her last cycle of this treatment: we will then have a full work up with bone marrow biopsy and scans. We will have decisions to make as to where to go from here. I’m too exhausted to get into it after this week, but those who have been with us on this journey all this time know what we are up against. We must press on and seek maintenance options to continue to help our girl remain clear of disease. Clear or NED (no evidence of disease) is not the same thing as cured. Not with neuroblastoma. They generally say you must be NED for 5 years before you can say cured. the chance of a reoccurrence after 5 years clear is very small...it does still happen but very rare. I hate that word: rare. And there is no accepted maintenance treatment although it is widely believed that there is an important miss

We slept! Hives are gone! She quietly drew sitting content in the sunshine while she let mommy sleep in💕We began to improve Friday but still had some itching into Saturday and flirted with a fever, however she’s on the upswing. We should be able to head home tomorrow after her morning clinic appointment❤️🌈 As I type this, we are sitting outside on the RMH 7th floor balcony while she is collecting random items (“treasures”) she finds in which she’s making some kind of “nature trash sculpture” and it is a sight to behold believe me🤣 When we see her playing so carefree and happily amid it all, it is not something we take for granted. We, of course, have learned to celebrate all the small joys for they are truly big ones. I have seen and learned of other Neuroblastoma families going through the unimaginable, some getting difficult news, searching for hope. Admittedly, while on this journey, I can put on my blinders and I battle with self preservation as fear is always just below the s

We have felt those loving prayers and they have sure been answered as our sweet girl got a break today. Of all days, today has been her best day of treatment. We don’t know why but it is the first time she didn’t even have any pain that is associated with this immunotherapy—besides all the normal premeds, she didn’t require any pain rescues or breathing treatments or even a single ice pack. Truly a miracle AND her rash is improving. I feel like I could sleep a week and a lead brick taken off my shoulders for sure. Now she gets the weekend to recover with the hopes the hives and fevers and pain stays away and we will be released for home Monday❤️🌈We are so grateful. God is so good #charlottestrong #charlotterocks Making everyone smile while wearing her prize box item around. She wore it to and from the hospital 😂

Well village, we are having a tough time here. The good news is that she is not having any major or life threatening reactions, all is manageable so far. However, last night we did end up with a high fever and needed to come back into hospital for fever protocol. Then, after we got back to RMH late her rash/hives that she began to develop Tuesday had begun to worsen. She has developed itchy hives on her head, neck, face, almost the entirety of her trunk and pelvis, and it’s currently migrating down her legs. She’s also developed an allergy to the dressing that covers her chest port. Team noted that her rash is a pretty rare and substantial reaction to the immunotherapy but that we can manage it and march onward. So, I’m managing as directed but the team here says it is likely to continue to worsen as her immune system is responding to this treatment. Picture your child having a full body drug reaction, you would of course take them to the doctor and stop taking the medication right? T

It’s human to wallow in our own self pity at times with a “whoa is me” mentality. I mean, who hasn’t. But if you spend one day on the 9th floor of Memorial Sloan Kettering (MSK Kids), it will truly cause you to re-examine your own limitations in the most eye opening way. The human spirit may be left untapped in some, but not in these children. We shared a room today for Charlotte’s treatment with a curtain drawn between us and another family with a little girl maybe a year younger then Charlotte. We both stayed private and never spoke to each other, focusing on our own child, but it was all I could do not to cross that curtain and first hug the bejesus out of that sweet strong angel and then give her parents a huge hug. She kept thanking them for this and that between her tears, amid her own pain. Her sweet and strong spirit palpable. I think that is what grace looks like. Charlotte did great today. Great in the sense that she was brave and tough and helped us help her through this

After an amazing Christmas season, we are back at it. We really don’t want to be here but we have been snapped out of Lala Land and it’s back to the fight. We have work to do and we are grateful for the fight. But it was hard to leave after such a long vacation all together. We have arrived in NYC to start round 4 of treatment tomorrow. We had the best Christmas break! It was a long break from treatment (an extra week), the children were off school, and Brian took a lot of time off work. So we had an ultimate Christmas Staycation and it was fabulous! But we were quickly snapped out of it when this last Wednesday rolled around and it was time to begin the dose of medication she begins 5 days before treatment. Charlotte ended up having an allergic reaction (hives) to this important medication that helps the immunotherapy work. We administer this medication to her in the form of a shot in her arm once a day for 10 days. She’s received it many times but there’s a first time for everythin