“And now, the moment you’ve all been waiting for…”
PLEASE: Do NOT call /text us immediately. We are overwhelmed with calls from the hospital and by actual logistics to make this happen and can’t answer you right now. This is ALL our information right now. If you have a question that isn’t answered here, we don’t have the answer. NOW….
We had two meetings with genetics and oncology at Johns Hopkins, in which we outlined a TENTATIVE PLAN. There are still some variables that could change things. Keep in mind, ALL THIS can change in a moment.
This will be a Q&A format:
“What kind of tumor is it?” There are 4 types of Medulloblastomas. Two have cool names; WNT and SHH (Sonic Hedgehog. Yes, really. From a fruit fly experiment.) Then Group 3 and 4 are mostly lumped together. Clearly, we will give them great names. Jonathan’s is Group 3-4.
“Is that the bad kind? I heard that has 30% survival rate! Should I freak out?” Thou shall not freak out. Jonathan is considered average-intermediate risk, not high risk. This is because he is over age 3, the entire tumor was removed and it is not in his spine. Overall, survival rate is typically in the 80% range…if you like numbers.
Why genetics testing? Do you need to test the baby? Having two sons with cancer raises red flags for hereditary disposition that can be tested for, although it is unlikely as William’s AML is Trisomy-21 related. IF Jonathan has this genetic syndrome, radiation WOULD NOT be helpful and would not happen, as it would raise the probability of more cancers. Instead another aggressive chemo regiment would become the new plan. Currently Elizabeth has NO genetic conditions that can be seen and there isn’t cause for concern at this time.
When will treatment start?
First, we need a port for medications and chemotherapy. This will allow for blood draws and monitoring as well. First we need: port installation surgery, a lumbar extraction (is there cancer in the spinal fluid-unlikely), physical and neurological exams, MRIs of the brain and spine, audiograms, and blood tests for organ functions. These will be for a baseline and tested repeatedly. This will take place between now and Halloween.
Radiation, if done, will begin on/before October 30. The process will take several hours/half a day. It will be 5 days a week, Mon-Fri for 7 weeks.
After a short rest period, we will start chemotherapy. Suggestions and alternatives are things I do NOT appreciate right now, even if you have great intentions-we have heard them all. Yes, we poison our kids to save them and we DO use the non-drug options already. I’ve heard it all, so kindly remain silent if you oppose our course of action.
Chemotherapy dates and times are still rough, but will last about 8-10 months. The entire treatment will last about a year with two years of follow-up care, which is very familiar. Typically, there are 2 or 3 days inpatient following chemotherapy administration. As his immune system tanks he may get fevers and/or need a blood transfusion. This could mean additional hospitalizations, as it did with Will.
Can you be around radiation pregnant? Yes. His radiation will happen under sedation, so I won’t be present/close, but once in his body it is not toxic. However, other family members will take this duty to keep us safe and because I’ll be in labor within 6 weeks.
Is Jonathan okay? Nope. Not even a little. He cried and was very scared and sad to return to the hospital. He does NOT want to return and acted completely typically. Blood draws were a challenge and much of the daily frustrations to come will be eased by the port, but the adjustment will be a challenge with his sensory issues and verbal delay from Autism. He has shown great courage and says the best part of the hospital is getting presents and Lego sets– for which I lovingly blame y’all.
Can he comprehend what is happening? Yes. He knows his brain had a tumor and an illness, he needs medicine and will need to be in the hospital a lot. He can grasp treatment plans at a kid’s level. As for the rest, can anyone fully grasp it?
What do you need? The meals, gift cards and groceries have been amazingly helpful, as have the Prime Pantry deliveries. THANK YOU. I can’t thank you enough.
The fact that in the next 6 weeks I will give birth and have the joys of post-pardum is… damaging my calm. I am in shock, overwhelmed, feeling okay and still laughing. Usually.
However, we feel well-supported. I am sure in the days to come I will need help picking William up from school, weekend help, or even basic housework help. Of course, the usual–someone to hold the baby so I can shower, etc., but we will also have family members in constantly. I’m not too proud to say Southwest points and vouchers are the perfect Christmas gift.
Yes, you can come visit. All of you. I don’t know when we will need it most or even when this will start, but I love y’all for wanting to pack and be here immediately.
There will be another update to answer more questions soon… including some of the more-ahem- interesting and notable questions.
We love you.