Home
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 missing component in maintenance therapies to help these kids remain clear. Immunotherapy has been a game changer for prognosis, and Charlotte has received 2 different kinds while undergoing treatment both in 2017 and currently. Now we press on further.
But first we rest and recover and regroup. She isn’t back to 100% yet but will be soon. She will be able to go to school and play with friends. She has some friends birthday parties and gymnastics and all kind of fun to be had. We are so grateful to be able to help her live her best life all while fighting for it. And we thank all of you for being here, going right along this journey with us.
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 missing component in maintenance therapies to help these kids remain clear. Immunotherapy has been a game changer for prognosis, and Charlotte has received 2 different kinds while undergoing treatment both in 2017 and currently. Now we press on further.
But first we rest and recover and regroup. She isn’t back to 100% yet but will be soon. She will be able to go to school and play with friends. She has some friends birthday parties and gymnastics and all kind of fun to be had. We are so grateful to be able to help her live her best life all while fighting for it. And we thank all of you for being here, going right along this journey with us.
glad you are home! XOXO Holding the vision that she will be clear or NED forever after this next cycle.
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