Calm before the storm

To give everyone their Emmett fix, here's a picture from last week:

Now for an update. Despite all our expectations that Emmett would begin treatments almost immediately, switching his care to Dana-Farber has ended up giving us one last week before treatments begin. We did meet with both the neurosurgeon and oncologist on Wednesday but have otherwise been able to visit with family, see some sites in Boston, and generally enjoy being around Emmett. For his part, Emmett has been happy and healthy, and is loving playing with all his new toys as well as being entertained by his grandparents, aunts and uncles. Among his successes this week are 1) climbing up and down stairs again 2) playing so hard with grandpa that grandpa lost his voice and 3) experiencing African wildlife in IMAX. It has been a calmer, relaxing week that has allowed us to prepare ourselves for what is coming. It has also been great to have family here to "divide and conquer" some of the many unknowns still out there. For example, how do you bathe a child who has a central line that is not supposed to get wet??? How do you tape/wrap it so it stays dry? There is a lot to be learned still.

Anyway, back to the doctors - both meetings were consultations to discuss treatment plans. The rough consensus was surgery to remove as much of the tumor as possible followed by chemotherapy and radiation. There is a Children's Oncology Group that meets every Thursday to discuss new cases. Emmett's case was up for discussion with the group this week and would allow a larger body of experts to hear about his unique circumstances and provide any additional suggestions for his treatments. Following that, plans were finalized.

Emmett will undergo surgery to remove the remainder of his tumor Monday. It is anticipated the surgery will last 4 hours and will be followed up by at least a couple days recovery in the hospital. We had a pre op appointment Friday morning. There is no scheduled pre-op MRI because Dana Farber has a fancy operating room that has an MRI in it. This means they can image during the operation, allowing them to see remnants of the tumor before they close him up, hopefully improving the success of the surgery, as well as minimizing the number of times he needs to be sedated.

Chemo and radiation will begin likely two weeks after surgery, giving his body a chance to heal a little first. There will be a follow up surgery to place an intrathecal catheter under the skin in his head. This will allow chemo to be injected directly into the spine via a port under the skin and eliminates the difficulty of getting it across blood-brain barrier. Some chemo drugs will be given through this while others will go through the Broviac central line. The treatments will also likely include focal radiation.

Intensive treatments seem like they would last in cycles covering the next six months or so. Lighter rounds that are administered at home would occupy the next six months.

As for how he's doing right now, he's great. I don't think he's ever been so entertained and has rarely had such a large, willing crowd to provide it. He's happy, laughing, etc. it's been a good week.

And in case you haven't had enough, here's another picture.