Driver's ed is over and the official certificate has arrived! We went to the DMV today and Sawyer officially now has an unrestricted license (meaning he can drive after 9 pm and can have more than one other non-family person in the car with him).
He's been steadily working on his Eagle Scout project proposal (painting the Alfred Box of Books Library) and is ready to get signatures to turn it in. Hopefully the approval process goes quickly and smoothly and he'll soon be able to put out a call for volunteers to help.
He also has been working on summer homework assignments for a couple AP classes he'll be taking. We picked up a couple dozen crickets this morning at the Hornell pet store so he can do a biology experiment with them (no worries, it will be humane!).
The three of us will be walking in a fundraiser for the CURE organization on Sept. 8th in Rochester. It's a four mile walk along the river and through donations raises money for an organization that we have found very valuable. If anyone is interested in donating/supporting "Team McFadden" whose motto is "Kicking Cancer's Butt" you can do so at http://www.active.com/donate/riverwalk2012/mcfadden2012 Our modest goal is to raise $150 in honor of Sawyer, knowing that the money will be put toward some of the best use possible: supporting families who are dealing with kids with cancer.
Wednesday, August 29, 2012
Tuesday, August 28, 2012
So begins the maintenance phase
Yesterday (Monday, August 27th) marked the beginning of the 'maintenance phase.' This means that instead of going to Rochester once a week or every other day as we were over the summer, Sawyer will only have to go once a month. While this is good news, he still has a long road to hoe. After we arrived at the clinic yesterday there was a slight delay due to the need to take blood levels, which turned out to be fine. He received chemo in his spine (lumbar puncture) and in an IV drip. Right now he doesn't feel great, but doesn't feel horrible either.
He doesn't have to go back for the more intensive chemo for four weeks, but he does have to take a huge number of oral meds at home. This includes a daily dose of chemo called 6MP and a weekly dose of methotrexate. The methotrexate will be taken in the form of fourteen (14) taken at one time (granted they're small pills, but it still makes for a small handful!). In addition, for one week each month he will take prednisone and a protonix. The latter helps lessen the nausea cased by the prednisone. So, even though he doesn't have to go back to Rochester for a month, he is still tethered to a rigid medical regime and it will be some time before he starts to feel like himself again.
Sunday, August 19, 2012
Vacation over, life is moving on
We had a really nice week at Cape Cod, relaxing and laid back. We're fortunate that some good friends of ours and their kids were able to spend most of the week with us. We really enjoy their company and Sawyer especially thrives on the activity of having three younger "brothers" to keep him entertained.
He still needs to take the driver's ed final (written and driving) to completely finish that course - the final was last week while we were away. Once that's done he'll be able to have his full license with no restrictions (and bonus, we get a discount on the insurance).
His focus the next couple weeks before school begins is spending time with friends, starting to work out again, work on his Eagle Scout project planning packet (getting the Box of Books Library scraped and re-painted) and finishing summer homework for two AP classes he'll be taking this year (biology and history).
Returning to school will be a welcome event. Getting back into a routine and being around others will certainly help mitigate the drudgery of the last year and hopefully start to make the unpleasant days (months) a faded, softened and distant memory.
He still needs to take the driver's ed final (written and driving) to completely finish that course - the final was last week while we were away. Once that's done he'll be able to have his full license with no restrictions (and bonus, we get a discount on the insurance).
His focus the next couple weeks before school begins is spending time with friends, starting to work out again, work on his Eagle Scout project planning packet (getting the Box of Books Library scraped and re-painted) and finishing summer homework for two AP classes he'll be taking this year (biology and history).
Returning to school will be a welcome event. Getting back into a routine and being around others will certainly help mitigate the drudgery of the last year and hopefully start to make the unpleasant days (months) a faded, softened and distant memory.
Saturday, August 11, 2012
Day of Milestones
Yesterday was a good day -- Sawyer finished driver's ed, drove to his appointment for the first time (previously he'd driven most of the way up 390 then switched with me, but yesterday he went the whole way, ending in the hospital parking garage), and most importantly he is now officially in the maintenance phase! It will take his body a few months to really recover from the last 10 months but he will soon start to feel better. He'll be on 3 different medicines at home during this phase (which will last until January 2015) and continue to get vincristine and methotrexate at the clinic appointments but they will be spaced out about once a month, with the occasional spinal tap to get methotrexate to protect his brain.
His appointment was only about half an hour long -- so much different from our last many months where they lasted 3 - 5 hours. He received quick injections of vincristine and methotrexate. They'll probably hit his system on Monday so he'll just take it easy through the weekend to reserve energy.
I asked the doctor what the likelihood is of him falling out of remission at this point, and he said it's very small since he's made it this far. And it gets better as time goes on. But there's always that chance.....
The next appointment is in two weeks. In the meantime Sawyer will be spending the next week in Cape Cod on vacation (we leave this morning!), working on his AP class summer homework and trying to put together his Eagle Scout project planning packet.
We'll keep adding posts to the blog but they will be much more spaced out now. We sincerely appreciate the continued support of everyone; please know it has made a huge difference!
His appointment was only about half an hour long -- so much different from our last many months where they lasted 3 - 5 hours. He received quick injections of vincristine and methotrexate. They'll probably hit his system on Monday so he'll just take it easy through the weekend to reserve energy.
I asked the doctor what the likelihood is of him falling out of remission at this point, and he said it's very small since he's made it this far. And it gets better as time goes on. But there's always that chance.....
The next appointment is in two weeks. In the meantime Sawyer will be spending the next week in Cape Cod on vacation (we leave this morning!), working on his AP class summer homework and trying to put together his Eagle Scout project planning packet.
We'll keep adding posts to the blog but they will be much more spaced out now. We sincerely appreciate the continued support of everyone; please know it has made a huge difference!
Monday, August 6, 2012
72 shots and done with Asparaginase
Today Sawyer received the last of his Asparaginase shots. For the past three or four months, we have made 24 treks to Rochester for him to receive the three shots during each visit. At the beginning it sure felt like it would be a never-ending count down! Several of these visits included additional doses of chemo. (And we made other trips for appointments not involving the shots!)
The photo below provides a glimpse into what Sawyer went through during each of these visits. After being pre-medicated with benadryl and hydrocortisone, he would receive two shots in either his upper legs or arms, followed by a single shot. Little wonder that he loathes hospitals, needles and surgical garb. It would be so nice to say that this is it; that he won't need any more chemo. Unfortunately we still have a ways to go. If all goes well, he still has two years and five months of chemo. On the upside, as his treatment progresses, the doses will be spaced farther and farther apart. He has one more appointment this week then he'll have a much-needed two week break, whew.
As I (Mark) was completing this post, one of the nursing technicians came in with a card and two boxes of cookies to congratulate Sawyer for getting through this course of chemo. Sawyer is sound asleep so it will be a nice surprise for him when he wakes up.
The photo below provides a glimpse into what Sawyer went through during each of these visits. After being pre-medicated with benadryl and hydrocortisone, he would receive two shots in either his upper legs or arms, followed by a single shot. Little wonder that he loathes hospitals, needles and surgical garb. It would be so nice to say that this is it; that he won't need any more chemo. Unfortunately we still have a ways to go. If all goes well, he still has two years and five months of chemo. On the upside, as his treatment progresses, the doses will be spaced farther and farther apart. He has one more appointment this week then he'll have a much-needed two week break, whew.
As I (Mark) was completing this post, one of the nursing technicians came in with a card and two boxes of cookies to congratulate Sawyer for getting through this course of chemo. Sawyer is sound asleep so it will be a nice surprise for him when he wakes up.
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