Home with a bit of frustration

Sawyer had a pretty calm night, sleeping as best he could with the constant interruptions of checks by the nurses. I slept at a nearby hotel while Mark stayed in the room this time. The oncology doctors came around 9 am to check in and during the conversation let us know that this really isn't the last phase before the "easy" maintenance. The next phase is "interim maintenance" - another two months that includes more spinal taps, heavy chemo and three more doses of these shots (another nine - bringing the total to 45). He's becoming a human pin cushion. That means that his summer will still be full of appointments and not feeling good. He won't enter the real maintenance stage until the beginning of school next year. We're not sure yet what it means for summer plans already in place (Lake George and Cape Cod, plus driver's ed, and a hope for him to be working part-time). He definitely won't be working and the doctors will try to work appointments around our trips, but there's no guarantee. And if they do, Sawyer may not be feeling up to a trip. We'll take it all as it comes.

While the news of this next step was discouraging to Mark and I, it hit Sawyer really hard. The straw that broke the proverbial camel's back. He had a tough morning dealing with all the stress of yesterday, the frustrations of not being able to run, jump, climb, and just in general be "normal" and the ongoing feeling crappy. We gave him lots of hugs and re-assured him that his reaction and feelings were very understandable and that our bodies and minds need a way to let it out.

 He was discharged around noon so we happily came home after a quick trip to Wegmans to stock up on food and drinks that seem to be the most palatable to his nauseous stomach. We picked out a few movies from the Redbox rental for diversions. He's feeling much better now. We go back tomorrow morning for three more shots, preceded by the Benadryl and the hydrocortisone buffers. We now have an epi-pen as a precaution for after the shots when we're out of the clinic. We don't expect to need to use it but it helps to know we have it. He will be observed each time for at least an hour after each dose since that's the normal time for a reaction to occur.

Next week we go back three times: Monday and Friday are just the shots while Wednesday includes the shots and a round of other chemo. So while we thought the end of June was the target, we are now looking at the end of August. Just another bump in the road that we'll manage and get through. We continue to be grateful for his overall health, prognosis and that he will be able to have a normal life. Too many others are not that lucky.