Clarity and Peace
Hi village! (Please bear with me for with the long update) We are HOME! I cannot even begin to try to describe the previous 24hours and trying to get her home, it was an Odyssey and will go down in my book as one of the most challenging travel experiences we’ve encountered due to several crazy circumstances that hit us out of left field but we are tough and we can do the hard things. The fact that she is home and finished with treatment has not truly hit me and Brian yet...but it WILL.
She had not even woken up from anesthesia yesterday, after her 4 location bone marrow biopsy, before I was sitting in front of one of the MSK oncologists to sign paperwork for the next clinical trial, the Neuroblastoma Vaccine, aimed at preventing relapse. Although we knew this option was coming and that it would be a blessing to be back to this point of discussing maintenance options, I still had a very visceral, emotional reaction, which I rarely ever do with the doctors. (I approach time with them in a very business like manner and save the emotional releases for my own private times back home, but fear can cripple. And I was afraid). Thank you for continuing to pray for our sweet girl as we await results and consider all we need to make best decisions for her continued care. Kids that relapse after all the treatment Charlotte has already received begin to run out of options. The doctors begin to use words like chronic, incurable, and quality of life. I cannot breath saying those words, I almost couldn’t type them just now, and I refuse to let those thoughts incite fear, which clouds our decisions. I know nothing good comes from making decisions based on fear, and so we really pray to God for His guidance and wisdom.
We should have biopsy results back in a few days, and after scans at Duke over Feb 25-26, we will review all findings and likely begin this next phase which is MSK’s standard of care now for their Neuroblastoma patients after treatment is over: the Vaccine. The same vaccine Charlotte had already completed in 2017-2018. However, there is another option for her, a new option that we have to consider and that lies heavy on our hearts. We have 2 choices. These decisions are excruciatingly difficult for us parents. There is no one consensus on what is best for kids like Charlotte. Research data is cloudy and murky and quite limited. We will not find agreement among all the doctors we would consult with. Can you imagine the enormity that rests on Brian and I? And this is where we pray for Gods grace. We’ve been here before but after her relapse, everything feels more desperate. We don’t need a miracle, she is already that. We just need clarity and peace
She had not even woken up from anesthesia yesterday, after her 4 location bone marrow biopsy, before I was sitting in front of one of the MSK oncologists to sign paperwork for the next clinical trial, the Neuroblastoma Vaccine, aimed at preventing relapse. Although we knew this option was coming and that it would be a blessing to be back to this point of discussing maintenance options, I still had a very visceral, emotional reaction, which I rarely ever do with the doctors. (I approach time with them in a very business like manner and save the emotional releases for my own private times back home, but fear can cripple. And I was afraid). Thank you for continuing to pray for our sweet girl as we await results and consider all we need to make best decisions for her continued care. Kids that relapse after all the treatment Charlotte has already received begin to run out of options. The doctors begin to use words like chronic, incurable, and quality of life. I cannot breath saying those words, I almost couldn’t type them just now, and I refuse to let those thoughts incite fear, which clouds our decisions. I know nothing good comes from making decisions based on fear, and so we really pray to God for His guidance and wisdom.
We should have biopsy results back in a few days, and after scans at Duke over Feb 25-26, we will review all findings and likely begin this next phase which is MSK’s standard of care now for their Neuroblastoma patients after treatment is over: the Vaccine. The same vaccine Charlotte had already completed in 2017-2018. However, there is another option for her, a new option that we have to consider and that lies heavy on our hearts. We have 2 choices. These decisions are excruciatingly difficult for us parents. There is no one consensus on what is best for kids like Charlotte. Research data is cloudy and murky and quite limited. We will not find agreement among all the doctors we would consult with. Can you imagine the enormity that rests on Brian and I? And this is where we pray for Gods grace. We’ve been here before but after her relapse, everything feels more desperate. We don’t need a miracle, she is already that. We just need clarity and peace
It was a long day in clinic waiting for her time for bone marrows and not able to have any food before anesthesia. This was take about noon...no food or drink all day, nor allowed in the playroom at MSK due to her having a runny nose/rhinovirus...so we sit and wait and play and entertain ourselves best we can. This is her spirit. And yes she loves her daddy
And this is our silly goofball on her way to (Duke 2 weeks ago) to be observed for allergic reaction to the GM shots we have to give each round. If the child CAN have any fun, she does🥰
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