Darn...

We didn't get the news we wanted today; Sawyer has to stay at Strong until tomorrow morning. We were hoping he'd be discharged today. Overall it's the right thing --- better to be bored in a hospital bed watching movies than go home and risk trouble with his health. Looks like his interim maintenance treatment schedule and the next round of asparaginase shots will begin next Monday, so everything will shift by a week. Again, probably a good thing since it will give his body this week to rebuild a bit before being hammered again. Hopefully we can avoid any more of these glitches!

4.1400 Update

Well, here we are again on the 4.1400 floor. Sawyer and I arrived at Strong last night about 9 pm to be checked out for his fever. Since his counts are so low they admitted him overnight to the pediatric floor as standard protocol. It was a late night, getting to bed about 3 am; luckily he got to sleep in until about noon. He's going to get the asparaginase shots this afternoon and will stay again overnight for observation. We haven't yet found out how this will shift his treatment plan but will soon enough.

Overall he's feeling fine. Had a low moment or two after finding out we needed to go to the hospital but has since pulled himself out of the funk and enjoyed conversations with the various hospital staff. Currently we're catching up on a few movies on the hospital network and just relaxing for the afternoon. Keep your fingers crossed discharge happens tomorrow!

Back to the ER

We learned over the weekend that Sawyer was (is) severely neutropenic and needed to restrict his contact with others. Perhaps we were made aware of this a bit late since he was running a low grade fever most of Saturday and into Sunday. By the time the visiting nurse came Sunday evening, his temp was over 101. We called the hospital and Laurie took him to the Strong Memorial ER. At the ER his temp was 102 so he was administered an antibiotic and admitted. We were hoping to avoid another admission before moving on to the interim maintenance phase, but here we are and continuing to hope for the best.

Laurie sent several updates this morning noting that Sawyer's temp is dropping and that his monocytes are high. That latter is an indication that his ANC should be improving over the next several days and he should be able to begin the next round of treatment within the next week or two.

More of the same

Hey everyone, it's Laurie, back from out-of-town. I spent most of a week in Boston for a conference on library/museum digitizing projects and then most of the next week in Cape Cod with my mom, sister and two nieces. I'm blessed that Mark was willing to have me gone for 10 days and be responsible for taking Sawyer to all his appointments while holding down the fort at home as well.

I took Sawyer to the clinic today for his next set of shots. Everything went smoothly and a bonus for me was that the hospital massage therapist was there and gave me a lovely chair massage. She offers her services to the parents and I jumped right out of my seat when she came along and asked if I wanted a massage!

After the appointment Sawyer wanted to have a late lunch at Sticky Lips, a BBQ restaurant in Rochester. I hadn't been before and very much enjoyed my lunch of their homemade macaroni and cheese with a couple bbq'd drumsticks. I highly recommend the place to anyone looking for a meal in Henrietta. On the way home we picked up one of Sawyer's friends who is spending the night; it's great to hear them chatting away about video games, books, friends and other general topics. Hopefully more of that will happen on a regular basis as Sawyer works his way toward a more normal life in the next month or so.

Part of the "normal" life will be taking driver's education this summer! Even though he has his driver's license (with restrictions) it will give him more experience as well as an insurance discount and an unrestricted license. The only downfall is the 6 weeks of time that needs to be blocked off; it means we will have to skip our usual week of camping and fun at Lake George in mid-July but we'll just plan on going next year.

After checking with the school guidance counselor, we found out that Sawyer is officially done with all his homework, final exams and regents tests! Free for the summer! (Not really, he's taking three AP classes next year and has summer homework for each of those.... but he's kind of excited about the assignments for those). We are very proud of him and what he was able to accomplish with his grades given that he wasn't in school except for a handfull of half days since mid-October. We are also very appreciateive for all the work that his dedicated tutor put in and the wonderful staff and teachers at school who were extremely accommodating and willing to work with us as things were in continual flux and uncertainty.



As we've said so many times before, thank you all for blessing our lives with love and support. It's such a bright spot in the world compared to the too frequent sad and discouraging news that's published each day from near and far. Life really is beautiful and we wish more people were able to experience and appreciate that (we know that all of you do!).

One more clinic visit down

Today's clinic visit represented the last of the re-intensification stage. Starting next Monday Sawyer will begin the interim maintenance phase. Through July and into August he  will receive vincristine and increasingly higner doses of methotrexate every ten days. However, he will also receive two rounds of asparaginase during that time which means that we will have to come up everyother day for those treatments. he is scheduled to receive the last dose of asparaginase on August 3rd.

From the set of Scrubs

This afternoon Sawyer and I saw his former kindergarten teacher while having lunch at the Jet. She was only in the restaurant for a few minutes before leaving. About ten minutes later she returned  and joined us in our booth. In her hand was a t-shirt from the set of the TV show, Scrubs. Her daughter worked on the set of scrubs from 2001 to 2006 and Mrs. Hall had a shirt from the 2004 season that was given to members of the cast and crew. what a nice gesture and keepsake.

16 and counting

Sawyer is in the last hour of another asparaginase treatment. He received his three shots at 1pm and we are now waiting the requisite two hours before we can leave. So far, so good. We are definitely becoming very familiar with the routine and hope that his tolerance for tnis replacement chemo continues.

Only 17 more to go!

Sawyer is currently knocked out due to a prophylactic dose of Benadryl. He received his three Asparaginase shots about one hour ago and there have been no reactions so far. He will need to be monitored for one more hour before we can go home. Hopefully the next 17 asparaginase appointments will be equally uneventful.

Just plugging on

Our appointment at the clinic on Monday was a bit frustrating. We arrived at 9:15 am and were expecting Sawyer to get two chemo drugs: vincristine and the asparaginase shots. We expected to be there for a number of hours due to the shots but during our brief meeting with the doctor found out that the pharmacy didn't have the asparaginase in stock. On one hand that was actually fine - meant we'd get out much earlier and Sawyer wouldn't be doped up with heavy Benadryl and hydrocortisone so he'd feel better that day and the next (all the better for doing homework assignments and taking his first regents exam). The downside is that it means another appointment to make up for it - it will get tacked on the schedule in mid-July.

The vincristine administration is really quick - probably 20 minutes tops - but we waited over 2 hours for the pharmacy to send the medicine up to the clinic, so our long-appointment-turned-quick ended up being fairly lengthy.

Sawyer has decided his second wish for the Make A Wish Foundation would be a trip to Japan. Mark will get in touch with the folks and then the process can officially begin and we'll let you know updates as we get them.

I'm in Boston for a conference (drove yesterday and will leave on Saturday), so Mark will be adding the next few posts since he'll be taking Sawyer to appointments, etc. while I'm out of town. I'm heading to Cape Cod for a few days after the conference (and hoping for some warm weather!).

Sawyer has his Global History regents test this morning (and will be taking it in a separate room rather than sitting in the gym with lots of other students). Then he and Mark will head to Rochester for the asparaginase shots, as long as they have the medicine.

We finally got Sawyer's driver ed schedule for the summer and it will mean we have to make some adjustments to our summer vacation plans (not really a problem). The intructor was willing to put Sawyer in the group that best fits with the clinic schedule so it should all work out. He'll have to be at school every day for driver ed for six weeks (MWF at 8 am!) but it will be worth it since he'll be able to get his unrestricted license at the end as well as get a lower insurance rate.

Make A Wish Foundation

We had a visit on Thursday evening from a couple volunteering for the Make A Wish Foundation. They had us fill out some paperwork and asked Sawyer for a primary and a secondary wish. His top wish was for a car - something sensible, four door, good gas mileage, good safety rating -- that would allow him to get a part-time job, drive himself to school and be with him through college. His backup wish was an Alaskan cruise (Mom & Dad would get to go too and he could bring a friend since he has no siblings).

We found out last night that the Foundation won't grant his first wish since they don't want to provide anything that might be dangerous (we knew they wouldn't approve anything like a hunting trip or weapons but were hoping a car would be acceptable). So they're asking him to come up with another wish and let them know which is the primary between that and a trip to Alaska. He's got a few days to think about it. It's not an easy thing for him - he's always been grateful for what he already has and hardly asks for things (small or big). Other ideas he was also contemplating were also trips -- Yellowstone Park/exploring the northwest or a hiking trip across England or Ireland. So, we'll see what he comes up with and what happens! We don't have a sense of timing for when he gets a definite answer or exactly when things might occur but at least it's something for him to look forward to.

Studying hard

Sawyer's been busy trying to knock off school assignments and start to prepare for his regents tests (global history, living environment/biology, and trigonometry). He went to school this morning for a half day and that allowed him to finish the last required biology lab he needs and take part of his French final exam.

Today he finishes two chemo medications he's been getting at home (an oral pill and a liquid injection) so hopefully his body will feel better and his mind will be clearer as the drugs work themselves out of his system.

Otherwise he's been eating and sleeping well, and doing a pretty good job of maintaining a sense of humor and positive attitude. It will all certainly be tested over the next couple weeks with the regents tests, going to Rochester three times a week, not feeling 100% and continuing to finish homework. But in the end he'll come out of this stronger and more resilient, even if he doesn't realize that until further down the road.

Groggy Monday

The shingles have mostly  healed up but the last remaining few decided to flare up and be rather itchy. Sawyer's been taking Benadryl to help but no surprise it makes him a bit sleepy. He slept most of the way up to Rochester yesterday for his appointment and he certainly slept the entire way home! It was a typical spinal tap clinic day: no food after 5 am, no liquids after 8 am, get weighed, height measured, blood pressure check, talk with the nurse practitioner, get knocked out for the spinal tap, receive additional chemo, heat pack on his back to help his lower back not cramp up from the needle prick, lay down for an hour to prevent a migraine from the spinal tap, try to eat something and then go home.

He is receiving chemo at home again this week through Thursday so we had to wait for the hospital pharmacy to mix up the syringes for us to bring home, and they were pretty slow getting to it. That chemo makes him tired as well.

It's going to be a week of pushing through grogginess/weariness to try to get a chunk of homework and tests done before next week. The next few weeks he has to go 3 times a week to Rochester which won't leave much time for anything, much less final exams and regents, but he'll have to manage it. Our target date right now is June 22nd: last day of possible school assignments and tutoring. Then he'll have one less thing to worry about!

Quiet week

This has been a fairly good week. No appointments, catching up on school work, much less discomfort from the shingles, and looking forward to a rail trail bike ride with fellow scouts on Saturday. He's also  been enjoying the new found freedom offered by his driver's license.

The Make-A-Wish Foundation folks will be meeting with Sawyer next Thursday to get a couple wishes from him. He was registered for the program back in October by the hospital social worker and at first I thought maybe it would be something we should turn down. But after what Sawyer's had to endure since then has changed my mind; he deserves something for his overall handling of the leukemia and for all the things he's not been allowed to do because of it.

His next appointment is on Monday (another spinal tap and other chemo). He'll stay accessed (needle in his port) when we go home since he gets another round of cyterabine from the visiting nurse on Tuesday and Thursday. Wednesday we expect to be back at the clinic to start the next round of asparaginase shots (which means returning on Friday, next week MWF, following week on Monday); they'll also give him the dose of cyterabine.

Looking at the statistics for this blog continue to amaze me -- it's been viewed over 30,200 times since we started it back in mid-October! You are all wonderfully supportive and we continue to appreciate it. Thank you!