Snow!

Looks like we'll have a white Christmas after all! Woke up this morning to a beautiful landscape outside, watching Mark trying to shovel and deal with Zero thinking it was time to play and attack!
We continue to be thankful for many blessings and hope that all our friends and family are healthy, happy and blessed as well.
Sawyer was out of school for few days when he came down with a cold (maybe the flu?): high fever and overall feeling blah. A trip to the clinic in Rochester confirmed that it wasn't a blood infection, just something for his body to naturally fight off. Which it finally has. He's continued to feel tired but it's the cumulation of getting over being sick, working out at wrestling practice, and his blood counts being lower due to the cold and the latest treatment  (last Monday). Day by day he's feeling more energized now that he has a break from school and wrestling. We'll keep an eye on things and may have him scale back on wrestling work outs if it seems that they wear him down too much.
We look forward to spending time with my family on Monday as we gather at the farmhouse for dinner and get-together. Christmas morning we'll head to Bradford to spend time with Mark's family after we open presents at home.
We'll have a quiet week around the house after that but plan on spending a couple days around New Year's with some good friends in the Hudson Valley. Maybe we'll actually stay awake past midnight to ring in the new year!
Merry wishes and love to everyone!

Hair

It's not the best photo but hopefully will give you an idea of the curly hair! It actually looks lighter in this shot. He's getting it trimmed up today after school to help tame a few of the curls and to make sure it's a good length for wrestling.
We spent the weekend in Saranac Lake/Lake Placid area in the Adirodacks so  Sawyer could participate in a Wilderness First Aid course. He really seemed to enjoy it, and Mark and I certainly enjoyed our time hiking, shopping and eating while waiting for him each day!

Thick, dark and curly!

Yup, that's right, Sawyer's hair has transformed from blond, straight and wispy to thick, dark and curly! And oh so soft. He now fits right in with the rest of his male cousins who all have similar hair! It's so strange to see curls coming out around his ears and along the back of his head. He's going to get it trimmed down but is willing to wait until after Thanksgiving so family members have a chance to see it all first. I'll see if I can get a photo of it to post online. We're not sure if it will stay this way or if it will continue to transform over time. He was born with black hair that later lightened to a light blond.

He's part of the wrestling team at school and has been coming home from his workouts pretty worn out, but mostly due to the actual workout -- you should see the muscles he's already been able to bring back! Needless to say, it's making him very happy. He won't be hitting the mats for competition initially -- still has to work out his concerns over the implanted port in his chest which is tender to touch, and rightfully worrisome since it's a direct line into his arteries. The doctors have given him permission to fully compete but it's up to him to decide what he's comfortable with. Overall, he's doing really well. We certainly know what to be thankful for during our Thanksgiving celebrations.

On Sunday, Mark and I will be going to Rochester as volunteer help for an fundraiser for the CURE organization. They're holding a brunch and live and silent auctions. It appears to be quite the affair and we're looking forward to being able to help out. Sawyer is hoping to also go but thinks he may need to stay home to work on a biology project. One really exciting thing associated with this brunch is that Mark will be bringing a $700 check to donate to the CURE; money raised from an event held at Alfred University that  he was instrumental in organizing (a fun, 7-mile hike that encourages students to get out and explore the beauty around campus). I know I'll shed some tears of gratitude on Sunday knowing what the money goes to support, as well as a few tears of sadness as we see and/or hear about other families who haven't been as fortunate with their children's treatments.

Monday will be Sawyer's next treatment at the clinic. If all goes well, it should be fairly straightforward and quick.

We wish everyone a relaxing and safe Thanksgiving. Enjoy the time spent with your friends and family; appreciate the love, the food, the laughter, the company and just life in general.

One year ago...

One year ago, we were sitting in a hotel room in Rochester, knowing that Sawyer had something serious, one of two very scary diseases. Knowing that we had so many caring friends and family that were concerned and would want updates, I decided to start this blog. Countless trips to Rochester, watching Sawyer bravely face a plethora of procedures, hard days, and uncomfortable procedures and too many nights in the hospital. 365 days.

Three weeks after his diagnosis, an amazing fundraiser "Stacks for Sawyer" happened (with lots of hard work by dedicated and caring friends). Over 1000 people attended and were overwhelmed by the donated goods for auction, the delicious brunch food, the enormity of community giving. Wonderful bracelets were created, t-shirts designed, songs sung. All creating a fund that has paid for gas, meals, hotels, hospital bills, medication co-pays, etc. A fund that meant we didn't have to stress or worry about financial issues; we could just focus all our energy on Sawyer and his needs.

And he made it through, we all made it through: me, Mark, Sawyer, and all of you. Together. Supporting, helping, hoping, praying, staying positive. Our community of family and friends made this hard journey so much easier and for that we are forever grateful. Even though the long road continues, we know that we can do it! Life itself is a journey, with unexpected joys and unwelcome surprises. Continue to love, enjoy the beauty and remember how precious every day really is.

Pretty quiet

It's been a wonderfully quiet last few weeks. No problems or issues except for a little lack of energy on Mondays when he takes his heavy dose of methotrexate. On Friday, Sawyer will start his first "real" job - working at the dining hall at Alfred University. We're really proud of him for wanting to work and for doing all the contacts/paperwork needed to get it lined up.

He's in in his junior year which means we need to be getting him registered for the SAT tests, starting to look at colleges, etc. All very exciting!

Work on his Eagle Scout project is mostly done; still a little painting and repair work left. Hopefully the weather will be nice enough some time this weekend that the painting at least can be done.

We just got his school pictures, and are sooooooo happy to see a healthy, smiling young man! He said his best friend was standing in his line of sight doing crazy faces, making him laugh.

Never straightforward

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.

Zero

Thought you might enjoy seeing Zero today -- he's laying on the same bed, what a difference!

1 month old

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.

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.

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

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.

More light-hearted news

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.

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.

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.

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!

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.

Another one bites the dust!

Another set of shots out of the way! He chose to have them in his legs today instead of his arms. We'll come back on Friday and get done with our last heavy week of appointments.

Having only one appointment last week has sat well with him. He's been feeling better overall, more energy, less nausea and walking with a bit more pep. That should soon become the norm!

We got a letter from Make A Wish asking for copies of passports so they can continue the process of (hopefully) granting his wish for an Alaskan cruise. Apparently we would either go out of Vancouver or at least dock somewhere in Canada that would require passports. If it happens, we think it will be sometime next July. Mark and Sawyer did the application and photo process today to get theirs renewed. Sawyer was a bit disappointed that his passport photo will capture him with so little hair!

We've signed up as "Team McFadden" to participate in a fundraiser walk for the CURE organization that supports kids with cancer in Rochester. They've been wonderfully supportive of us and we feel good about trying to give back to them so they can help other families (particularly ones who don't have the fabulous support system that we have). The walk is only 4 miles long but it's along the river in Rochester in early September so it should be just a fun, relaxing event for a good cause.

We're looking forward to our trip to Cape Cod in a couple weeks as the end of a challenging part in Sawyer's life and the beginning of a "get-back-to-normal" phase. Hopefully we can find something special to do while we're there to celebrate! Our real celebration will be in January 2015 when he actually finishes his chemotherapy treatments (well, before that we'll be celebrating his graduation from high school), then the big, big party will be when he's 21 and can be declared cured!!!!!

Uneventful afternoon in the clinic

Sawyer had a wonderfully uneventful afternoon yesterday - well, uneventful for him. He received three types of chemo and was connected to a monitor for most of the afternoon, but all went well and we are in the final stretch of the more intense/invasive part of his treatment. He only has five more doses of Asparaginase and two more heavy doses of methotrexate and vincristine until he is officially in the maintenance phase which starts in mid-August.

Knocked off another one

One more set of shots, and one more "series" completed today! Free of appointments for the rest of the week! Next Monday he starts the final round of asparaginase shots and will be soooooo happy to get them over with. They should be it - no more are supposed to appear in the maintenance phase.

Sawyer's been feeling pretty worn out and more nauseous than usual since his Friday appointment. It may be due to the combination of drugs: asparaginase, vincristine and methotrexate. Last night was particularly hard. Please, August 11th, get here quickly!

Here's a photo of what he's usually faced with when he goes for his appointments. This is just one set of fluids, meds and needles to come before him during his recent visits. You can start to understand why he really has developed an aversion for heading to Rochester!

TGIF

This was a big week to get through - three appointments is quite a few, along with a blood draw on another day (four needle pokes and nine shots is usually enough for any of us over a many month span!). Today he got the usual asparaginase shots plus methotrexate and vincristine. His counts are really strong but he's feeling worn out -- physically and mentally.

Next week will be blessedly light, just one appointment on Monday to finish this round of shots. Altogether there are 8 more appointments between now and August 10th, then he'll officially be in the maintenance phase and keeps getting promised that he will begin to feel better and gain some energy back. Let's hope there are no surprises between now and then. We'll head to Cape Cod on August 11th for a week and we all hope he's feeling perky and strong to enjoy the trip. If nothing else, I think the "get-out-of-town-for-fun" trip will be really good for his psyche and will be a turning point in getting his usual life back.

Three more knocked off

Since the last post, Sawyer's knocked off three more appointments and sets of shots. He's tolerated them all well. We go back tomorrow for another set plus additional chemo. The visiting nurse will come today for blood work - they need to know his blood counts since he gets methotrexate tomorrow and the dosage will be dependent on counts.

Otherwise he's been feeling fairly well. We've discovered that taking an acid blocker like Pepcid AC cuts down tremendously on the nausea he's been having. He's a bit tired from the meds but otherwise decent. Driver's ed keeps him busy each morning (he has a little bit of homework associated with it) and otherwise he occupies himself with games, friends, tv and short hikes in the woods.

Back home and doing well

Sorry for the delay in updating the blog. Sawyer came home last Wednesday June 27th) after three days at Strong Memorial. His ANC was still critically low upon discharge (.18 with normal being above 1.3), but all of his other blood counts were in, or close to, the normal range. Much to his delight, he was not held for another day. Despite the angst in the events leading up to admission, his spirit and attitude seemed to bounce back once at the hospital and as he started feeling better. He really seemed to enjoy interacting with the doctors, nurses and other medical staff and in turn, they did (do) a nice job of making him feel valued.

On Sunday (July1st) he had more lab work (i.e. blood drawn) and his ANC recovered nicely with a reading just over 1.3. This was good news since it meant that he could begin the 'interim-maintenance' phase of his treatment which started yesterday (Monday, July 2nd) and included a lumbar puncture (spinal tap), methotrexate, and the first round of the asparaginase. His next appointment is this Thursday (July 5th) for another round of asparaginase. He seems to be tolerating this replacement chemo quite well which of course we hope continues for the remaining eleven rounds. 

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!

Thoughtfulness

Today's appointment was long (8 hours in clinic) but uneventful, other than Sawyer's nurse practitioner bringing in a chocolate chip cookie cake for him to celebrate getting his driver's license. It even had a toy car sitting on top that he plans to put on a "memory shelf" in his room. She had no idea he likes cookie cakes so much that it's been his traditional birthday cake for many years! We really appreciate the staff in the clinic, especially a few of them who definitely take extra special care of Sawyer (one of them is a graduate of the Alfred University nursing program!).

He starts a new pill med at home tonight (takes it for 2 weeks) and gets 3 days of at-home chemo as well. The next appointment is on June 4th.

Hope everyone enjoys the long weekend and spends a few moments remembering family and friends who are no longer with us, as well as appreciating the ones that still are! Life is precious and we need to let others know they are too while we can still do it in person.

Passed his driver test!

Finally, something positive...Sawyer passed his driver's test today on the first try! He went out for his first solo drive a couple hours after we got home to see how it felt to drive alone (drove into Alfred to get some milk). We're going to go out for dinner tonight to celebrate.

His shingles continue to heal and aren't bothering him much. Boy, are they ugly looking! Allergies are giving him some sinus pressure but OTC meds are helping with that.

We'll be up early tomorrow; need to leave about 7:30 am for his appointment in Rochester. We'll be sure to bring our iPads and some snacks since it will be a long day. The good news is that he isn't scheduled for another appointment until June 4th so he'll get a little break again (although he will get chemo injections at home on Friday, Saturday and Sunday and be taking an oral chemo pill every day for a couple of weeks - so maybe it's not really a break after all). I guess it's just another regular schedule in the "new normal" for families dealing with cancer. If nothing else, hopefully this blog helps educate us all about what it all entails.

Another Quick Visit

Sawyer had to return to the clinic this morning as a follow up for his shingles and the fever he had on Friday. The entire visit took a little over an hour with Dr. Mullen declaring that the shingles were in the 'resolution stage.' Dr. Mullen also noted that the fever was most likely a reaction to the shingles. At this point Sawyer is on schedule for his next treatment on Thursday which includes three types of chemo, one of which involves a lumbar puncture and another that requires he receive fluids for a couple hours before and after it's administered. We'll probably be in the clinic for about eight hours.

Home again, home again

Sawyer and I arrived at the pediatric ER at Strong about 8:30 this morning and happily walked out about 2:30 pm. We at first thought they were going to admit him so being able to come home was a treat! Nothing in particular showed up in his blood test to worry the doctors other than low electrolytes so they gave him a couple different antibiotics and some saline to boost his sodium level. His blood counts are good, another reason they didn't feel the need to keep him overnight. We picked up some Gatorade and splurged on ice cream cones on the way home. He has to see his primary doctor on Monday morning for a follow up appointment. The oxycodone continues to alleviate pain from the shingles (which are starting to crust over, a good thing) and Tylenol helps with the accompanying joint pain. He's been relaxing by listening to a book on tape for awhile then watching a series on World War II on Netflix (not something I could relax to!). Hopefully his fever stays away for the rest of the weekend! Mark will be volunteering tomorrow at a table sponsored by CURE in Rochester for the Lilac Festival. CURE is a fantastic organization that supports families with kids with cancer. Since I'm not on Vermont for the weekend, I'll be able to get some progress done on a few projects while enjoying the forecasted beautiful weather.

Rochester Bound - yet again

Whenever Sawyer starts taking his temperature on his own, we know that something might be up. He is pretty good about self-monitoring himself for fevers. About 11pm last night Sawyer started checking his temp and it varied between 100 and 101.5, but most of his readings were in the 100.3 - 100.5 range. Since 100.5 is the magic number for a trip to the ER, we called the on-call physician who reported  that unless Sawyer's temperature is consistently above 100.5, we should bring him in. this was not the case so we went to bed. This morning his temperature again seemed to vary wildly. Using the temporal thermometer, his temperature was about 99, but using an oral thermometer, it was over 102. Again we called the on-call who said to bring him in to the Strong ER. Laurie was planning on taking a hiking trip to Vermont with several friends but was understandably uncomfortable leaving with Sawyer on his way to the ER. Therefore, instead of heading for Vermont right now, she is at the Strong ER where Sawyer's temp is 100.5 and he will be receiving antibiotics.

Even Sawyer was ready to go this morning. Last night he seemed annoyed at the thought of another trip to Rochester, but this morning he not only agreed that a trip was in order, but within ten minutes he was packed and ready to go. He said he could feel that something wasn't quite right due to muscle soreness and stiffness in his shoulders and arms. While this could be due to the shingles, he was glad to hear we were heading for Strong.

Manageable

The new pain medicine we got last night knocked Sawyer out and thankfully let him sleep all night. He's taken a few more doses today and is at least much more comfortable, enough to work with the tutor this afternoon. The doctor in Rochester also told us to double the doses of antiviral medicine to help with the healing process. Apparently it takes longer to get over the shingles if your immune system is weak (guess that's not surprising). He's lost the hair again on the left side of his head from laying on it so much the last week to be comfortable. Mark will probably shave the rest of it down later.

Gratitude

Alfred proves yet again just how special it is, and how grateful we are to be living there. How many people can call their doctor or pharmacist at home, at any time, and have them agree with no hesitation to meet you at their office? I'm on my way to pick up a different pain medicine for Sawyer at 10:20 pm at our local pharmacy (which has been closed since 5 pm). We made a similar call to our doctor a couple months ago. You guys rock!

Uncomfortable

The shingles are now rearing their most unpleasant side and are causing Sawyer quite a bit of discomfort today. I just talked to the on-call doctor who said we can give a double dose of morphine pills to see if that will help. Keep your fingers crossed it does so he can get some relief and sleep. If it doesn't cut it, we can get another pain prescription to supplement. The doctor said she has admitted patients for shingles pain in the past to get IV meds, let's hope we don't need to go there. His rash starts at his belly button and wraps around the right side to his spine. As always, he's not complaining, but holding steady and calm through the pain. On a happier note, he felt well enough last night to do some practice driving in Wellsville (especially parallel parking) and go to a movie with a friend; his road test is on Wednesday and hopefully things will be cleared up enough for that and for his appointment next Thursday.

Shingles

Well, our hopes have been dashed that Sawyer will continue to feel well and go to school until his next appointment. Today he was diagnosed with the shingles. Luckily it hasn't been too painful but is still bothersome and means yet one more pill to take (3 times a day for 10 days). He's feeling like the universe is out to make sure this year drags on.

Feeling well

Wednesday's appointment was short, only about an hour and consisted of getting two drugs he's gotten many times. He started again on the oral steroid but thankfully hasn't had the bad side effects like last time because he's taking a protonic pill that helps coat his system and prevent it from being so irritated.

He's been feeling quite good; went to school yesterday for a half day and again today. Hopefully that will continue through next week as well. His next appointment isn't until May 24th. Keep your fingers crossed we won't have much to report between now and then (other than to say he's still feeling good, is plugging away on school work and has been getting together with friends!).

We got news that two of our friends who have been going through cancers of their own have pretty much reached the end of their treatments and the prognosis for both is good. We are so thankful and wish them both the best!

Wonderfully uneventful

Today was the last round of the replacement asparaginase chemo and all seemed to go very well. Sawyer received the three shots and was on his way home by 1pm. He ate a big lunch and is now resting comfortably at home. The successful completion of this first round of replacement chemo is a big step. He now has to tolerate three more rounds of the replacement asparaginase over the next four months. This is in addition to all of the other rounds of chemo and steroids. We hope that the rest of his treatment is equally uneventful and effective.

He had a chance to relax over the weekend by going to see the new Avengers movie and spending time on Sunday with lots of extended family members at the Lounsberry farm.

Made it through the week!

Finally through this long week! The appointment today went as well as it could; just a culmination of too many appointments and too much medicine. Luckily Sawyer was done with the daily oral meds yesterday that gave him bad heartburn and stomach cramps. It's still working its way out of his system but he feels better. Mostly fatigued from the meds and from the high doses of Benadryl he's received all week. The plan is to take it easy over the weekend and enjoy his time until Monday rolls around when he'll get the last dose of shots for this round. Wednesday will be at the clinic as well but it should all just be chemo meds through his port. Then he thankfully gets a two week break (although he'll go back on the oral med for a week in there - but we have another medicine that is supposed to help alleviate the side effects - it better work!). We are happy to cross each day off the calendar as we work our way closer to the end of this phase.

(Mostly) smooth day at the clinic

We arrived for the appointment at 10:30 but since there was a full house of patients nothing really happened until about 11:30. Sawyer has a reserved room for his appointments - the one right in front of the nurse station so he can be in sight. We got to go to the room right away and got settled in knowing it would be many hours before we left. The only bumps in the day were the waits for the nurses to be able to do the next needed step and the fact that Sawyer's nerves made his stomach pump out more unpleasant acid (he's been having trouble with heartburn) and he threw up, then spent the next half hour dealing with excess saliva and generally feeling yucky. Things settled down enough that he decided to try to eat something to help absorb stomach fluids and ended up eating lots of dry Cheerios. That helped! Over the course of the next five hours he received eight different medications. Two for his nausea, two to help alleviate an allergic reaction, one to help cut down on possible pain from the shots, and three different chemo drugs (including the shots). All in all, a typical day at the clinic. He kept distracted by watching some tv, chatting with the nurses and Mark's sister when she stopped by (she's been working at the hospital) and by snoozing once the Benadryl hit his system. We left about 3:30 and he'll spend the evening resting on the couch. Only two more doses of the new medication that has been bothering him with heartburn, bloating and flushed skin. It's a steroid medication that he started taking last week at home (twice a day). He goes off it for a week then back on for a week, then hopefully done with it.

A rough but productive day at the clinic

Sawyer woke up yesterday feeling better and was definitely more animated than the day before. But as we approached Strong Memorial in the morning for his appointment, his mood became noticeably more stoic and sullen. He said he associates the sights and smells of Strong with unpleasant experiences (no surprise there).

After completing the standard intake process (weight, blood pressure and temperature) we were moved to a treatment room right across from the nurses station. Sawyer's face and neck were very red and because of this Dr. Mullen asked for blood work before administering chemo. Sawyer's mood was not helped when both ports in his chest would not draw blood (that meant he was poked twice in the chest), then an attempt to draw blood from his right arm failed, and finally after a fourth attempt his left arm produced the needed blood.

One hour later, it was reported that all his blood levels were normal; he started his pre-chemo prep about 1pm and finally had the three chemo shots administered at1:40pm. In case you're keeping track at home, this leaves a grand total of seven needle sticks for the day. 

Once again, Sawyer seemed to tolerate this replacement chemo fairly well. At 2:30 he had a brief bloody nose which prompted the doctor to request additional blood work to make sure his platelets were okay. Platelets help with blood clotting so the spontaneous nose bleed led to concerns that he might need a transfusion. Blood was drawn from one of his ports (which eventually cleared) and at 3:30 it was reported that all of his levels were fine and that he could go home. This may have been the first and only time he smiled all day. The good news is that he's tolerating the replacement chemo quite well, the not-so-good news is that he gets to do pretty much the same thing again on Wednesday, Friday, next Monday and Wednesday. (Then all over again, six more times, two weeks after that).

He's on a daily chemo pill at home for a little while as well and that has been bothering his stomach and making him pretty tired. We're trying to make sure he keeps eating throughout the day to combat some of the nausea; right now his go-to dish is macaroni and cheese with some pulled pork mixed in. He's also eating yogurt everyday since that seems to help as well.

Remaining on High Alert

(I somehow managed to delete the original post when I was trying fix a spelling error -- oops). This was mostly a post about our worry that Sawyer might be reacting to the new medicine in the shots since his face and arms were quite flushed when he got up in the morning. But after a call to the hospital, we were reassured that it was more likely a reaction to the oral steroids he was on. But the uncertainty was worrisome until we got the answer.

Good again today

Sawyer and I returned to Rochester this morning for his second dose of the shots. He was once again prepped with a strong dose of Benadryl and some hydrocortisone before getting the shots. The Benadryl has the added benefit of helping to calm his nerves a little. He was hooked up to a heart monitor and blood pressure cuff as well, and a doctor was in the room through the first critical half hour. Thankfully all went well again.

They held him for about two hours of observation afterward. He'll get two more heavy doses of Benadryl for good measure later today and I have the Epi-pen in my purse with the dear hope of never needing it after he leaves the clinic. We just have to get through 13 more of these appointments! So if I turn gray (to match Mark) you'll know why!

The next appointment is on Monday for the next dose of shots, then Wednesday for a regular chemo treatment day and shots, and finishing up the week on Friday with more shots. Thankfully his birthday falls on Tuesday so he can at least be home for that. He turns 17! (Driver road test scheduled for May 23rd!)

Just to clarify

The "new" phase we learned about today was always part of the protocol - we just weren't aware of it. Everything is still on track as far as Sawyer's progress. The doctors are very pleased with how he's responding to the treatments and are confident all will continue as planned.

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.

So far, all is good

Bottom line: Sawyer tolerated the new drug through the tense, critical first half hour when most strong reactions occur. What a relief! And then he went on to have no other problems.

 We arrived at the hospital about 9:15 am for his appointment in the clinic to get the spinal tap and administration of two other chemo drugs. That went smoothly. We also got a day-by-day schedule for the next two months. They call this last phase "delayed intensification." What's not on the schedule are the days for the rest of the shots he needs; they couldn't develop that part until they knew how the initial shot went.

 We had to wait quite awhile for a room to be ready in the pediatric ICU so we just hung out in the room in the clinic chatting, reading, checking email, etc. When he was transferred to the ICU we found out he's in the exact same room as last time, although this time when we walked in there was no bed! We were in the room for probably over an hour before one arrived. This room has a beautiful view unlike the ones in the regular unit so that's a small bonus.

 Even after the bed arrived it was a couple more hours of waiting until things got started. He got more nausea medicine since his stomach felt bad right after the initial chemo this morning. Then they prepped him with Benadryl and a steroid to help lessen a possible allergic reaction (he'll get that each time). And they got all the necessary supplies and additional meds in place in case he did react. Two nurses from the cancer unit had to come to give the shots since only nurses who have been specially trained to administer chemotherapy can actually do it. Poor Sawyer started shaking like a leaf right before the shots since he was so nervous (yes, I said shots - apparently "one dose" is actually three shots). He can pick where he gets them and decided his arms - two on the left and one on the right. Which means that overall he will be getting 36 shots instead of "just" 12.

He received the shots at 6:30 pm so it's been a long day. We (and his nurse) needed to keep him awake for the first half hour to monitor him then we could let him snooze. He's really groggy from the Benadryl. At this point we hope he can be discharged tomorrow and assume we'll come back on Friday for the next dose. It may be given in the ICU or in the clinic. We have to wait until his doctors come around and tell us what they've decided. We are very happy to have finally gotten through this appointment. It was moved so many times which just helped aid in the build-up of stress and worry. We will still be nervous through the rest of the shots since he could react to those. So keep up with your positive energy, thoughts and prayers to get us through this last big hurdle toward the end of June.

The wait is over

Blood tests done (again) this morning. And finally.... he's ready for his next treatment cycle to begin! We have an appointment at the clinic at Strong for tomorrow morning at 9:30 am. It was originally scheduled for Monday and I'm glad it got moved due to Mother Nature's temperament that day in Western New York (who would think we'd get our biggest snow storm of the winter on April 23rd?!)

Sawyer will get another spinal tap and then some chemo infusions in the clinic, then be admitted to the pediatric ICU to receive the first shot of the erwinia asparaginase. We're all a bit nervous about it, understandably, but the waiting and worrying is getting worse than what I anticipate the actual event itself will be. Another reason to get things started again!

The break has definitely been fantastic (5+ weeks) for Sawyer to have time to focus on visiting with friends, catching up on school work, feeling good, etc. He's been happily eating ice cream, desserts and all sorts of food in order to stock his body up for the next two months when he won't be eating much at all. And even though he's been feeling well overall he hasn't been able to go to school since his immune system was too depressed. He even got to enjoy Hot Dog Day in Alfred with his buddies even though the weather was less ideal.

He got caught up on all his school work over the spring break except for French. We've found a terrific tutor to help him with that subject; she comes tonight for the first time. She'll get him caught up and then continue through the rest of the school year to prepare him for his final and to stay caught up with work. His regular tutor (who is awesome) will continue to come as usual but being a science teacher doesn't exactly help him tutor someone in high school French!

This last intense phase of treatment lasts 8 weeks which will unfortunately take him through the rest of the school year and his three Regents tests. The original schedule would have had him done a few weeks before the end. Another disappointment from having the schedule shift was that he was nominated by his school to attend a national youth leadership seminar for a weekend but he's had to now decline since he wouldn't be able to be in a crowd nor would he feel good for such a busy weekend. But in the end, it's all small stuff compared to getting him on his way to being cured!

Still waiting....

So by now we've had about six appointments cancelled and rescheduled as we wait for Sawyer's blood level to get to where it needs to be. There's no cause for concern - out of the eight or so things they check everything is strong except the ANC (immunity fighting neutrophils). The ANC is working its way upward but the doctor wants it to be a bit higher before the next treatment. We were reassured that this is very common and that he's still in remission. He flew through his methotrexate treatments which apparently is not always the case; some patients don't make it through all four treatments. But since that process was pretty rough on his body, it just needs a bit more time to rebuild.In the meantime, he continues to enjoy a healthy appetite and is eating large portions of the delicious meals finding their way to our house each week from our caring friends.

Currently the next appointment is scheduled for Wednesday morning.

Still not there yet

Sawyer had a blood draw today and the results show that the one number that needs to be at a certain level is still low, so no trip to Rochester tomorrow. We assume they will re-test on Thursday and if the number is where it needs to be we would go on Friday. But hopefully we will talk to the clinic tomorrow morning and get some solid information.

Sawyer and I had a wonderful weekend visiting our good friends - a much needed mini-vacation for both of us!

Treatment re-scheduled

We finally have some information about the next treatment time! It only took about four calls back and forth with the hospital (which is unusual - but his next step is unusual for the doctors so they were trying to decide how they wanted to proceed).
The phases of treatment are broken down into individual days to track on which day a particular procedure or drug is to be administered. In this phase, he is supposed to get a spinal tap and about three chemo drugs in the clinic on Day One (which was originally yesterday but will now be next Monday). On Day Four, the schedule calls for the drug asparaginase which is the one he had the bad reaction to. It will be replaced by a variant drug administered as a series of shots instead of an infusion into his port.
The doctors decided to combine Day One and Four, so when we go to the clinic on Monday (assuming his blood levels are where they need to be - blood test on Thursday will let us know where it's at) they will do the spinal tap and chemo infusions in the clinic then they will admit him to the pediatric ICU. He will receive the alternate drug and be held overnight for observation. I envision a whole team of people being on hand for the first administration of the drug to be ready for action in case he reacts badly to it as well. A bit nerve wracking, really. But we have faith that all will go smoothly. And if it does, they may administer a second shot of it. He needs to have three shots total next week and three again the following week. Assuming all goes well, the additional shots will be given in the clinic, not the ICU.
This phase is a repeat often December and January treatments and is the last one before Maintenance Phase (woo-hoo!). It means weekly visits to the clinic in Rochester but this time there will be four weeks out of the eight that we go multiple times for the shots to be given.

On a fun note, Sawyer and I are going to celebrate his feeling good by taking a short out-of-town trip over the weekend to visit some close friends we haven't seen in awhile. Mark has work commitments that prevent him from going with us so he'll hold down the fort while we're gone.

Rochester trip delayed

We had a nice Easter visit and dinner with Mark's family today and Sawyer had his blood drawn in the early evening after we returned home. He still feels really good but one of his blood count numbers is too low for him to have the scheduled treatment tomorrow in Rochester. His body just needs a few more days to rebuild from the heavy chemo it got over the last two months. This is not unusual; everything is still good overall. It just means the schedule will get pushed back a week most likely. We will hear from the clinic some time tomorrow to find out when they want to test his blood again and when they want to reschedule the appointment. My guess is that they will wait until next Monday.
In the meantime, he will continue to enjoy his healthy appetite and his hair growing back in! He already thinks his hair has a different texture than before which seems to be very common with folks who have gone through chemotherapy. Time will tell.

A week of sunshine!

We all enjoyed the sunshine this week (although it could have been just a little bit warmer)! Sawyer went to school Half-days and is now hanging out at home with a couple buddies who are going to stay overnight. The tutor will come for awhile tomorrow morning, then the afternoon will be spent at another good friend's 16th birthday party.

The downer is that his Thursday blood tests result show his immune system is pretty low, so he will need to be extra careful about who he's around and germs in general. The visiting nurse will come back on Sunday evening to test again. His counts need to be at a certain level for him to have the scheduled treatment on Monday; currently the counts aren't where they need to be for it so we can't be certain yet about going to Rochester on Monday. It's not a bad thing, or necessarily unexpected, if he needs another week they'll just wait and reschedule. It just means the whole schedule for this phase shifts a week.

There's no school next week which gives him a bit more time to catch up on some work that's due for the end of the quarter which finished today.

We hope everyone has a fantastic weekend and enjoys jelly beans, colored eggs, hidden baskets and all the other goodies coming on Sunday for Easter.

Another good week

Sawyer had a good week - eating well, feeling good and went to school half days all week where he got to catch up with friends and teachers. He plans on going to school again this week.

Today I hosted a family get-together at my grandparents' farmhouse and over 47 people showed up! It was really nice that Sawyer could be there and not have to worry so much about being in a crowd. And he got to meet some extended family he hadn't met before. He spent much of the day hanging out with a couple of his cousins and relaxing. All in all, a good day, a good week.

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.