School days

The weekend was good -- laid back, quiet and relaxing. All three of us went to church on Sunday morning and Sawyer was able to help out with a youth group fundraising luncheon afterward. His appetite is getting better although strong smells still bother him. He's starting to feel better, more "normal" and looks good, although he's losing some of the hair that had re-grown (I can never tell if the hair on the floor is his or the dog's!).

School beckoned and he attended this morning, the first time since he attempted a few half days back in December. He had to sit out during gym class and watched a Richard Simmons video with some fellow students who had forgotten to bring their swimsuits. He was pretty perplexed about what people ever saw in Richard Simmons and I'm not sure I was able to give him a satisfactory answer! He chuckled when he said he actually misses school food! It helped that they had one of his favorite school lunches: popcorn chicken.

I picked him up during lunch so that he could be home when the visiting nurse came to draw blood. His medical release only allows him to attend half days (and still be tutored) so he will do that this week and next. He'll decide if he wants to go for the morning or afternoon each day, depending on which classes are offered when. This three week gap in treatments is a real treat and a much needed break for him, mentally and physically. It will help him get through to June when the maintenance phase begins.

Enjoying the sunshine

Sawyer's week at home has been going well. He seems to be feeling better this time than in the past after his methotrexate doses. He's been getting outside each day, either sitting on the porch or going for short walks with the dogs.

The visiting nurse will stop by today and do another blood draw. We're hopeful the blood levels will be good enough that he can consider going to school tomorrow for a half day. If not, he'll wait and go on Monday. He has an unusual three week break from treatments -- this week of recuperating and then hopefully two full weeks of feeling decent, doing half days at school and hanging out with the track team after school during practice.

We had hoped to go in early April on a trip to Gettysburg and Baltimore to celebrate being done with the hospital stays but the doctor nixed the idea. Sawyer really should stay within a couple hours of home (and the hospital). But once June comes, all travel restrictions will be lifted when he starts the once-a-month maintenance phase. So that's our target now -- get through to June!

Going home!

This cycle went very smoothly and Sawyer's system has cleared the methotrexate even faster - we are heading home this evening instead of the expected tomorrow morning. Sawyer is very excited to have this part of the protocol finished, plus it means he can go to a wrestling team get-together tonight for awhile. There are no more scheduled hospitalizations!

We had visitors today that helped make the day go by quickly and pleasantly.

The next two months will be a repeat of December and January's schedule - weekly visits to the clinic with low counts and probably a transfusion or two. But June will bring the beginning of the maintenance phase which switches to once a month visits and more days of feeling decent. This will continue throughout his junior and senior year of high school, so graduation will be doubly meaningful for life milestones!

Moved!

Sawyer was just moved out of the 4-3600 unit to 4-1400 which has become our home away from home over the past several months. There are several upsides to the move. First, we are familiar with the staff; second, we know where things are here, and third, there are about five few unhappy infants here. We just commented to the nurse how quiet it is on this wing and she noted that it is best not to test fate by saying the "Q" word. Duly noted.

Fairly Uneventful Night

Sawyer began receiving the methotrexate last night at 11am. This is so much better than the 2am start time the last time we were here. The night went well except for beeping IV machines (they seem to know the moment that we fall back to sleep) and a roommate that was trying to be quiet, but made enough noise watching TV or talking to keep us up for part of the night. As usual, Sawyer is making up for lost sleep this morning and is just now starting to awake from his hibernation. Updates to follow.

Methotrexate - Fourth and Final Round

It is now 3pm and Sawyer is getting hooked up to the first bag of fluids. We are on a different unit (4-3600) than in the past which requires getting used to a new nursing and tech staff. This is quite easy since everyone we have met today is extremely nice and equally professional. Sawyer has a dual port embedded in the right side of his chest (because he is left handed) into which his fluids, chemo and medications are injected. Right now only one side of the port seems to be working. This isn't an immediate problem, but they are working to correct this issue. Sawyer will receive fluids for the next six to twelve hours before they can start the 24-hour chemo treatment. The earlier the chemo is infused, the earlier he can end this chapter of his treatment - one he will not miss.

Feeling good

Sawyer has been feeling fairly decent the last few days. He definitely enjoyed the warm weather today and spent some time outside playing with the dogs and breathing in some fresh air. He's getting mentally prepared to go back in the hospital on Wednesday, hopefully the time will go quickly and it will be easier to tackle knowing that this is the last one of these weeks! If all goes well, he will come home on Sunday. He would love some visitors if anyone is heading to Rochester!
We're not sure what the schedule will be over the next two months but will hopefully find out this week. It should at least mean the end of the intense treatment cycle and we hope that it also means more days, then weeks of feeling good for him.

Home sweet home

We were pleasantly surprised to hear early this morning that Sawyer's blood concentration level was at 0.07 - perfect! We left the hospital about 11:30, stopped for gas and a few groceries, and are now home. He'll be home for a week and a half before going back for his last in-hospital stay and there's no scheduled appointments between now and then.

We'll have to soon find out what the schedule is for the next month or so after the hospital stay so we know what to expect and when we hit the end of this phase of the treatment. The next phase is the maintenance phase which lasts for two years but should be much less intense and bothersome.

In the meantime Sawyer is getting settled back in at home and waiting for a friend to come visit.

Easy day with lots of company

Mark left the hospital this morning and I arrived. We passed each other around Exit 9 on 390.

Things are still going very well: quietly, smoothly and uneventful. Sawyer's blood test level from early this morning was 0.5 so we can expect the next one (which will be drawn at 2 am) should be around 0.25. Since it's getting close to the desired "go home" level of 0.1 they should test again around mid-day in hopes that it will be there and he can be discharged. Keep your fingers crossed!

Our first visitors today were my sister and brother-in-law, followed by Sawyer's girlfriend and her family, then later in the day three friends came with one of their moms. It was wonderful to see everyone; it makes the time go quickly and it's terrific to see Sawyer's face light up with laughter and to be engaged in good conversation.

A Fairly Quiet Night and Update on Asparaginase Replacement

Last evening our good friends the Woughters brought their son Dan and two additional friends, Aidan Curtin and John Mormino to visit (distract) Sawyer. It worked. As they were leaving Sawyer was heard to say that he was going to break one of his friend's legs so that they would have to stay (it's the thought that counts). The remainder of the night was relatively quiet with the exception of the medication switch that took place at 2am and again at 2:30 am. It also helped that Sawyer's roommate moved out yesterday afternoon and the bed has remained empty. Having a private room is wonderful.

This morning Sawyer's primary physician, Dr. Mullen, stopped by with his cohort of resident doctors in tow. He provided an update regarding a replacement chemo for asparaginase. As you may, or may not, recall, Sawyer had a severe allergic reaction to asparaginase about a month and a half ago and will no longer be receiving that medication. Dr. Mullen reported that asparaginase is a very important part of Sawyer's protocol and will be replaced with erwinia / erwinaze. This is a close relative of aparaginase and studies have shown that it has a 90% tolerance rate and that its effectiveness is close, if not equal to, that of asparaginase. Both are good news. The only downside is that it has to be administered as a shot (intramuscularly) three times a week for two weeks (that cycle will happen twice; once for each time he is scheduled to get asparaginase). Dr. Mullen stated that the first time Sawyer is scheduled to receive this treatment, it will take place in the PICU (Pediatric Intensive Care Unit). Of course this is good news that will only be made better once we see that Sawyer can tolerate the treatment.

A Busy Night

 Sawyer did not begin receiving his methotrexate until 2am last night (or this morning). According to the medical staff, Sawyer could not begin the 24-hour chemo treatment until his blood levels reached a certain PH level. Unfortunately this required almost 12 hours of a pre-treatment solution. Past visits only required about six hours of the prep-solution. The 2am arrival of methotrexate was preceded by the arrival of a roommate at 1:30am. The commotion finally settled down around 3am.It is now going on 9:30am and Sawyer is doing his best to sleep. During the brief moments he is awake, his only complaint is that he is tired - which of course is understandable.