Sawyer had his monthly appointment yesterday in Rochester. It was a beautiful day to drive up, traffic was good, construction not bad (but I can imagine the relief of the thousands of hospital workers once the construction around the three sides of the hospital is done!).
The spinal tap went smoothly and we were hoping to be heading home about noon, but neither of his ports were cooperating after the procedure (they need to give blood return in order to have any medicine injected -- it lets the nurses know there's no leaks since they don't want the medicine to get out of the vessel and damage any tissue). Both sides of the port were accessed at the beginning; one gave a blood return, the other didn't. They used the one that did to give him the propyphol to knock him out for the procedure; but when it came time to give the vincristine injection the port no longer gave any blood back in the tube. They tried everything: sit up, lay down, arm up, arm down, breathe in, breathe out, nothing worked. This has happened in the past but usually one of those actions gets things moving again.
They decided to flush out the port with a liquid called altaplase - it needs to sit in the line for awhile, kind of like Drain-O. We watched "American Pickers" on TV while waiting (pretty good show!); the port was still being ornery when they tried it but it gave a slight bit of blood, enough to inject the vincristine but not enough to draw blood for lab work. So, he got poked in the arm for that and we were able to head home shortly after 2 pm.
So nothing major, just the frustration of being poked a couple extra times and not being able to leave when expected. His next appointment will just be getting the vincristine, if all goes well we should be in and out within an hour (hopefully I didn't just jinx that appointment!).
Next Saturday we'll be participating in a 7 mile hike sponsored by Alfred University. It's a beautiful walk starting at the University's equestrian center and ending at Pollywogg Holler (an eco-resort with wood-fired pizza). It will be a restorative walk: Sawyer did it last year just a week and a half before he was diagnosed, so he had been sluggish and not feeling great but found the energy to walk 7 miles! This year he will be much more perky and healthy!
Sunday will be another painting session for his Eagle Scout project. Most of the painting was done last Sunday but there's some trim work, higher boards and a few places that will need a second coat. He has a fantastic cadre of volunteers, scouts and a non-scouts, helping out.
Tuesday, September 25, 2012
Friday, September 21, 2012
Zero
Thought you might enjoy seeing Zero today -- he's laying on the same bed, what a difference!
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| 1 month old |
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| 10 months old |
General news
I've added a box on the blog homepage to follow it on email: I'd suggest doing that since our posts will be more spread out now that life is thankfully much more normal. You should get an email with either the text of the newest post, or an email saying a new post has been made. Wish I had thought to do that sooner!
Sawyer's going to school full-time, enjoying his AP classes particularly (US history and biology). He likes both those subjects and I think also likes the challenge of their level and scope. School pictures were on Wednesday; luckily his hair has grown back in enough to look like a short crew cut.
His Eagle Scout project is to re-paint the Alfred Box of Books Library: he's had a couple work sessions so far to do the scraping, caulking, and priming. Tomorrow is supposed to be the big day of trying to get as much of the painting done as possible, but, nuts, it's supposed to rain. Not sure if he'll try to re-schedule for Sunday or wait until next weekend. Maybe some painting can get done in the morning tomorrow to get started.
His next appointment in Rochester is on Monday. He gets another spinal tap along with methotrexate and vincristine.
Sawyer's going to school full-time, enjoying his AP classes particularly (US history and biology). He likes both those subjects and I think also likes the challenge of their level and scope. School pictures were on Wednesday; luckily his hair has grown back in enough to look like a short crew cut.
His Eagle Scout project is to re-paint the Alfred Box of Books Library: he's had a couple work sessions so far to do the scraping, caulking, and priming. Tomorrow is supposed to be the big day of trying to get as much of the painting done as possible, but, nuts, it's supposed to rain. Not sure if he'll try to re-schedule for Sunday or wait until next weekend. Maybe some painting can get done in the morning tomorrow to get started.
His next appointment in Rochester is on Monday. He gets another spinal tap along with methotrexate and vincristine.
Thursday, September 13, 2012
Eagle Scout project underway!
Sawyer started work on his Eagle Scout project today - got to learn how to run a powerwasher and not break any windows or wipe out anyone's foot! More work will happen this weekend (painting, priming, etc.) -- anyone interested is welcome to stop by the Box of Books library in Alfred.
Monday, September 10, 2012
Photos from the CURE walk
Dan, Ariana, Mark, Laurie, Sawyer, Amy
The boardwalk over a curve in the Genesee River (marshland mostly)
Sawyer opening the walk with a welcome and short speech
People waiting for the walk to begin
Saturday, September 8, 2012
The CURE walk
Many, many thanks to our friends and family that generously donated toward the fundraising walk we participated in today for the CURE (Cure Kids Cancer) organization. We were able to raise $215 for an organization that is invaluable to families watching their beloved children struggle and fight to beat cancer. We get their monthly e-newsletter that is full of helpful information, announcements, support, and sadly, too often, mention of some of the kids who lost their fight. Brings tears to my eyes every time. So, again, thank you for helping out, it means so much to us! And a big shout out to Amy, Dan and Ariana who also registered and joined us for the walk -- their continued support has meant much.
The walk took place along the Genesee River in Rochester and began at a dock located at the river's end where it flows into Lake Ontario. We had never been there before and were really pleased to discover such a neat place! Lots of boats to look at and a wonderful walking path along the river and, for quite a section, a boardwalk over a marshy part of it. We look forward to going back to explore more!
The weather didn't cooperate as much as we hoped but it could certainly have been much worse. There was a light rain during most of the walk with a short heavy burst right before we finished. We had packed extra clothes since we knew it was supposed to be wet so it all worked out.
We were proud and delighted when Sawyer was asked by the organizers to "kick off" the walk - they gave him a megaphone and asked to, at minimum, say something like "let's begin the walk" but being the gracious person he is, he said he had been through some trials in the last year and was grateful for the CURE and their support for him and others. Unfortunately not very many people really heard him since it was pretty noisy and the megaphone didn't carry far. But it was very touching for those of us who could hear.
Afterward, we had a yummy lunch at the Olive Garden in Victor and wandered through the Victor mall for a little while after (short by my standards, but much too long for Mark and Sawyer -- imagine the torture of having to spend 1.5 hours in a mall.... but they handled it with grace and even managed to buy a couple of things). To top it off, we went from there to our favorite store (Eastern Mountain Sports) and picked up a few great items on sale.
Our next event with CURE will be volunteering to help out with a fundraising brunch/silent auction they're having in Rochester in late November. Should be fun, and certainly worth our time.
The walk took place along the Genesee River in Rochester and began at a dock located at the river's end where it flows into Lake Ontario. We had never been there before and were really pleased to discover such a neat place! Lots of boats to look at and a wonderful walking path along the river and, for quite a section, a boardwalk over a marshy part of it. We look forward to going back to explore more!
The weather didn't cooperate as much as we hoped but it could certainly have been much worse. There was a light rain during most of the walk with a short heavy burst right before we finished. We had packed extra clothes since we knew it was supposed to be wet so it all worked out.
We were proud and delighted when Sawyer was asked by the organizers to "kick off" the walk - they gave him a megaphone and asked to, at minimum, say something like "let's begin the walk" but being the gracious person he is, he said he had been through some trials in the last year and was grateful for the CURE and their support for him and others. Unfortunately not very many people really heard him since it was pretty noisy and the megaphone didn't carry far. But it was very touching for those of us who could hear.
Afterward, we had a yummy lunch at the Olive Garden in Victor and wandered through the Victor mall for a little while after (short by my standards, but much too long for Mark and Sawyer -- imagine the torture of having to spend 1.5 hours in a mall.... but they handled it with grace and even managed to buy a couple of things). To top it off, we went from there to our favorite store (Eastern Mountain Sports) and picked up a few great items on sale.
Our next event with CURE will be volunteering to help out with a fundraising brunch/silent auction they're having in Rochester in late November. Should be fun, and certainly worth our time.
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