Day 7 and ambiguous test results

He is just finishing up his 7th treatment as I write.  In general, things have really been going well this week, and so far the side effects from treatment are tolerable.  His 2 major complaints have to do with the smell of the radiation and also its effects on his skin.  For whatever reason, when they are radiating his brain, he is very bothered by the smell.  However, there is no scent in the air that anyone else can smell.  It is something within his brain.  It happens to many people receiving treatment, and they don't really know why.  It is some kind of hallucination within the brain.  We have tried a variety of solutions to mitigate the smell, but nothing has worked that well yet.  I mix aquaphor with some food grade oils (the same oils that candy is made with like a Jolly Rancher) and then we put it under his nose.  He seems to prefer watermelon, but it is not a perfect solution, and the smell still really bothers him. In fact, I am not even sure it does anything, but he thinks that it does, and that is what is important.   As the days drag on, I am worried this will be our next fight to overcome.  The other main side effect he is dealing with is skin irritation.  It is particularly uncomfortable on his relatively fresh scar.  It is extremely red, itchy, and painful.  We cover his head daily in a thick thick cream, but most people we see that have had a few weeks of treatment are very red, and dry.  In fact, there is a possibility that he will have a permanent "sunburn" down his spine.

Thus far, all of his blood counts and what not have come back favorably.  However, since last month a cancer indicator particular to his tumor called AFP has slowly been rising.  When he was first diagnosed, the number was around 1500, which is extremely high, and directly related to his type of cancer.  After chemo, his numbers were down to about 2.5.  Unfortunately, these numbers are slowly climbing.  Post surgery it was 6, last week 13, and after bloodwork yesterday, it came back at 20.  They have ordered a PET scan and a new MRI for next week to see if they can find anything if the numbers don't go down.   They are looking for cancer cells throughout his body, not just in his spinal cord or brain now.  If the cells are just within the spinal cord or brain, then the radiation should take care of these errant cells.  If they are somewhere else, then I guess there will be a new plan.  Right now we will have to suffer with the anxiety.  There is no clear reason this is happening, and as of right now, his treatment will not change.  And although they don't know why this is happening, it is definitely not the trajectory we were hoping for.  The best case scenario would be errant cancer cells left after chemo, and his numbers are climbing because he has yet to be radiated.  We try not to go to the worst case.  Though, there have only been 2-3 documented cases where the cells have migrated outside the brain and spinal cord.

The unknown is one of the hardest things to deal with.  There are so many unknowns, and since his disease is so rare, there are not immense amounts of data.  It is also a balancing act on what to tell him.  He likes to know everything, and deserves to know, but it always needs to be tempered.  His attitude is incredible, and that is so much of this battle because the treatment is so grueling.  Since we can't do anything about it, we try to just get through each day because this does not have an easy solution or an easy answer.

On a more positive note, we explored Boston a little more in the afternoon.  He had been dying to take the T, so he mapped out the station closest to our house, and navigated the system to get us where we needed to go.  Though he's not in school, there have been many life skills he has picked up beyond the hardest skill which is that he can endure anything.  The cutest skill he has learned is doing laundry in a communal building.  He has navigated the card system to buy minutes for the machine, learned that you must get your laundry out as soon as it is done because someone else is waiting, and commercial dryers ruin your favorite clothes.  He thinks the whole thing is fun.  I figure he will be well trained for college.   His personality has just blossomed throughout this entire experience as well.  He is comfortable dealing with all different kinds of people and all different kinds of situations.  He is confident, conversational, and engaging with everyone.  A far cry from the reserved little guy before this started.  We are so proud of him.  He is adorable.

Lastly, some college students from Suffolk University came to cook dinner with a bunch of kids staying at the same place that we are.  Noah enjoyed himself so much.  They made caesar salad, pasta with tomato sauce, and we hung out in the evening with a few kids and their families who are  receiving similar treatments for all different kinds of cancers.  Everyone has a different story, but we are all fighting the same fight.

 This is an electricity/lighting show at the museum of science.  We spend about an hour there each day exploring.  It is right across the street from our apartment, and is an incredible museum.

                                                                      Selfie on the T

This is the Boston Public Market.  There must be 50-70 artisan vendors selling incredibly delicious food.  We have tried apple cider doughnuts which is a specialty of New England, fudge, lobster, hand cured meats.  Our goal is to try something from each vendor before we go home.