As many of you wonderful followers know, Charlotte recently completed 9 rounds of immunotherapy or hu3f8 antibody. After that she had a complete workup of scans.
For the first time EVER, Charlotte’s MIBG scan (nuclear scan that shows Neuroblastoma) was not as bright and she actually has some “resolved” or cleared areas! This was huge news for us, as we have been told in the past her MIBG would probably always light up as it did at diagnosis. Her spinal, brain, and orbital MRIs all showed a decrease in tumor sizes as well!!
Her CT still shows change in the two spots on her ribs. They aren’t growing but their shape is changing. The radiologist believes it could be from different angles and the ways that slides are cut from each scan. Her PET also shows that these two spots are almost at the baseline to be negative. They are .1 and .2 away from it. Usually with “active” cancer it is at least 1 above the base number. The doctors seem to be confident that the disease on Charlotte’s scans are matured.
My concern is, Are they? No one (except God) TRULY knows. The doctors aren’t 100% certain, and I am not completely convinced that we should stop treatment.
We will do 2 more rounds of antibody over 12 weeks and reevaluate. If all continues to improve and look good, she will qualify for the Bivalent vaccine trial at Sloan. It is a vaccine that will be spaced out to go over a year and will hopefully teach her body to fight the cancer if it were to return. One of the tough things about Neuroblastoma, is when diagnosed at a later age, it is known to come back. That terrifies me. I have seen so many of our friends relapse. Once a child relapses, their odds of beating it, are considerably less.
I know this is no way to think or live. I can not live in fear. It is not healthy for me or our family. I must enjoy every day that comes, as it comes.
Charlotte is doing wonderful. She finally kicked her virus, but with the minimal outings, has picked up something else. It is definitely not as severe as the others, a slight runny nose, but she is doing well for the most part!
Please continue to keep her in your thoughts and prayers.
- that her cancer is gone for good
- that this trial will work and strengthen her body to fight
- for the doctors deciding what is next
- for peace for our family in their decision
- a strengthened immune system
- Charlotte’s miracle
- the good news
- for getting past her previous odds
- for shocking the doctors
- for amazing doctors and nurses
- for improvement in scans
- for our happy, dancing, darling daughter
- the faith he has instilled in us
- for Charlotte’s miracle
“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours” Mark 11:24
“But the Lord is faithful, and he will strengthen you and protect you from the evil one.” 2 Thessalonians 3:3