Noah's Journey: October 2016

This has been a pretty good week for so many reasons. Adam and boys came last Saturday, and we have all been together for the week. When they arrived, Eli jumped out of the car and gave Noah the hugest hug on the planet. It was so endearing, and reminded me about some of the positive ancillary effects of this experience. The younger two boys can really not even begin to understand the things Noah has had to endure, but they have become more compassionate, more understanding of each other, and hopefully better human beings in the end. They stuck by Noah's side every morning. Even when we had to be at radiation at 7am, which felt like 4am to them, they got up without a complaint, and escorted him there. They came inside the treatment room, watched him get set up on the table, and were exposed to a part of life I never imagined seeing myself. They met the many kids and families that have become a part of our everyday, as we wait together while our kids get treated. A few have become a little extended family, in particular, a family from Peru whose 3 year old daughter is being treated as well. I am sure one day we will visit each other's homes and hopefully look back on this as a very distant memory.

We have spent a lot of quality time together this week, and I am sure the kids will never forget this experience. We have spent many hours at the park just enjoying the fresh air, having dinners together, and going to Noah's endless appointments. They have participated in all of the activities where we are staying including cooking with college students, playing with Harvard buddies, pumpkin carving, and the whole community even celebrated Simon's 7th birthday last night.

We can all appreciate how lucky we have been that Noah has not been terribly affected by the radiation yet. Many of the kids are so nauseous and sick that they can't even get out of bed. Noah has become a little more tired, and doesn't eat that much, but his spirit is high, and energy is pretty good. We also celebrated on Tuesday because the protein in the blood that was rising has dropped significantly. If it continues along the same trajectory, it should be normal by next week, which they expect.

Ten years ago, kids with Noah's diagnosis were not on the same protocol, and the prognosis was not as good. They learned that they must administer 6 treatments of high dose chemo and radiation. In his case, we had to get the remaining tumor out and so it delayed his radiation schedule by about a month. They believe this was just enough time for the remaining cells to start multiplying again, and it was even further evidence that Noah absolutely needed the radiation, which I guess at one time was controversial. So, we are feeling very positive and hoping that in 11 more treatments he will be done forever. Though, I guess we will never be totally done. Hopefully he won't have too many long term side effects from the radiation. Only time will tell.

I am headed home on Sunday with the little ones, and Noah will be here with Adam for the remaining 2 weeks. I am hoping it will be smooth and seamless, as things have become kind of routine now, and there are not really any surprises for him anymore. Adam's parents will also visit, as will Noah's Uncle Josh, and Great Uncle David, so there will be a lot of love to be had.