November update

Happy Thanksgiving! We, along with so many other people, have much to be thankful for in life.

Sawyer came home Tuesday evening from school and went home today. As to be expected, it was a pretty busy break! Wednesday morning began at Alfred-Almond School for a catch-up with his high school coach/mentor and the wrestling team, along with a quick lifting workout. Then on to Rochester for the monthly chemo appointment (went well, 2 more to go!!!). We enjoyed lunch at a brick oven pizza place and did some shopping at a couple of our favorite stores (Barnes & Noble, EMS, Trader Joe's).

Thursday (Thanksgiving) was spent in Bradford with Mark's family, Friday was a sleep in/relax kind of day, Saturday was Thanksgiving with my family at the farmhouse/hanging out with high school friends, and today he left about lunchtime to head back to New Paltz (caught a ride with someone from his class that also goes there).

It was great to spend some time with him, and I'm delighted that he was also able to catch up with both sides of the family and see some of his "old" buddies. He's really doing well, blossoming at school, loving his classes, and enjoying his new friends. He's registered for classes next semester: Chemistry II, Physics I, Geomorphology, and History of Rock (Music). What a mix!

We'll see him in a couple of weeks as we travel to a gathering in NJ with some of my Alfred U. college friends to watch the Army-Navy game (an annual tradition with the same great folks we spend a week with in the summer for PirateFest at Lake George). Sawyer will be home for a month beginning Dec. 19th -- it will go fast as we fit in the penultimate and the final chemo appointments, dentist appointment and haircut, Christmas, New Year's, and hopefully a trip to Lake Placid in early-mid January to celebrate the ending (THE END!!!!) of chemical injection and daily pills. Not even sure how to describe the emotion that all brings about (just want Feb. 1st to get here so he can really start to enjoy his life and health). Certainly Sawyer's health and overall positive outlook is the biggest thing that we are thankful for during this time of giving thanks.

I hope everyone had a wonderful Thanksgiving and was able to spend time with loved ones. We are thankful for each and every one of you who has continued to support us through this long journey.

October update

Sawyer was home Oct. 11 - 14 for his mid-semester break. It was, of course, great to see him for a few days! He was able to catch up with a number of his high school buddies since their college breaks were at the same time. He did have to think about school work though since two of his classes were holding their mid-term exams the day after break... not very nice of them. He's doing really well. Enjoys the group of friends he hangs out with. Had all "A" grades in his mid-term report card. Must be planning on going to a Halloween party since he was talking about gathering items for some sort of costume. Many of his friends are performing arts majors and the type that like to perform and not be shy about dressing up!

The Monday of his break was the monthly trip to Rochester for his chemo treatment. That went well and was routine. He had an additional appointment to see the orthopedic oncologist for a check up on his hips. New x-rays showed they have gotten a bit worse. The top of the normally round hip joint has started to flatten out. The doctor said the stiffness he has is arthritis and told him to not do any running (for at least a year), and to expect hip replacement surgery in the next 5-15 years. Not news any running-loving, fitness geek, 19-year-old wants to hear. He was understandably bummed at the news but by Thursday said he'd come to terms with it. He can still lift weights, bike, hike, and do other general activities. He is going to sell the skateboard he purchased a couple of months ago since that does bother his hips.

Last weekend he got a chance to finally go hiking in the area around New Paltz. He's been wanting to do that for awhile. He'll probably take his car to campus next semester which will facilitate getting around easier and make it more possible to plan additional hiking/snowshoeing trips. This weekend he is going on a daylong geology class field trip. He's looking forward to that!

He comes home next for Thanksgiving break. Will get home on Tuesday evening, return on Sunday, with the next chemo appointment on Wednesday.

Four more to go!

We got to see Sawyer over the weekend since it was time for his next treatment in Rochester. He was only home for Sunday afternoon/evening but enough to get caught up and enjoy his company. The dogs were happy to see him, and vice versa. Itching to cook, Sawyer even made dinner! Food is fine at school but eating in the dining hall every day does get old. Typically he eats breakfast in his room, and has "dining dollars" on his card to be able to eat at campus cafes and a few restaurants in New Paltz.

We drove to Rochester early Monday morning for the appointment, then headed across the thruway to Albany and down Rt. 87 back to New Paltz, arriving early evening. The trees are just starting to show color. Too bad we weren't traveling in a couple of weeks when everything will be decked out in multi-color. I think the fall colors this year will be spectacular.

All is good with his health. This was his penultimate spinal tap, one more to go in December. He has 4 more treatments, then done!!!!!! If counting by numbers, he started at 40 [months]. We'll have to figure out some sort of party in January.... just hope time doesn't drag between now and then ... I'm so excited for him to be done with all of this!

Settling In

Sawyer's been at college for 2 weeks now and seems to be settling in very nicely, whew! He's made a few friends to hang out with. has a study partner for Calc III, has decided that skateboarding around campus is better than biking and has therefore purchased a long board, has been happy to let us call him a few times to check in, and seems to enjoy his classes.

Not that we were particularly worried about his transition but it's still a relief to know that it's going well! One of his classes was required as part of the special interest housing he signed up for: First Year Initiative. The class is "College Student Success" taught by the psychology department and I think it will be very useful to him. There's about 120 students in the FYI program. They're all supposedly interested in things like community service, campus leadership, and doing well at school. They all live in the same building, have additional upperclass mentors, and will do some projects together. In addition to the success class, they're also all together in their English composition classes. Should all help to build a group of people they see regularly and can get to know. They had a retreat today at the nearby Mohonk Mountain Preserve (no details yet, haven't talke with Sawyer).

Tomorrow he's scheduled for a bus trip to the NY Renaissance Festival, about an hour south of New Paltz. He's also planning on signing up for a student organization or two. Wants to get out for some hikes and nature-related trips on the weekends.

We try not to pepper him with a bazillion questions when we talk with him or as text messages, but so far he doesn't seem bothered by the level of our inquiries. It will be interesting to see how he reacts to being home in a couple of weeks. It will be a quick trip for  him, probably only home for 18 hours max before heading to Rochester for his treatment, then straight back on the road back to school. Only 5 more treatments to go!!! I don't usually wish for time to go by quickly, but getting to the end of January with no complications and an all-clear from the doctor can't get here fast enough!!!!! What a relief that will be to Sawyer to stop taking all the medications and for his body to start rebuilding itself without constantly getting hammered by drugs.

This morning Mark and I participated in the CURE Childhood Cancer 5K in Rochester. It was our 3rd year and each time I tear up when they mention how many families benefit from their support and services. They made such a difference for us.

Off to college!

Summer has moved along, as it tends to do. Our trip to Lake George was relaxing, albeit a bit on the cool side. Sawyer and his buddies (all 5 of them!) had a wonderful week together, exploring the woods, kayaking, swimming, jumping off cliffs, watching wildlife, eating well, etc., etc.

He worked his last day at Herrick Library yesterday. He worked part-time and they were very gracious in being flexible with his schedule. Our focus now is getting him packed and dropped off in New Paltz! Still have a few items to pick up at the store, his room needs to be cleaned up, a few other loose ends to tie up. We'll leave on Wednesday afternoon, stay the night with friends, and arrive on campus Thursday morning. He's excited and nervous, ready to go but feeling nostalgic. If anyone is interested in sending him mail, his address will be SUNY New Paltz, Esopus Hall 46, 1009 Hawk Drive, New Paltz, NY 12561-2455. His residence hall is fairly new and on the edge of campus, surrounded by trees and next to a small pond. It will suit him just fine! He will have a single room so no stress about whether he'll get along with a roommate.

As always thank you to everyone who has supported him and helped to get him to this point! We are blessed to have such wonderful family, friends, and colleagues.

Graduation

Three very  happy people celebrating Sawyer's graduation from Alfred-Almond on Saturday!! It was a warm day but the ceremony was short and sweet and surprisingly not as emotional as I expected (I packed some tissues but didn't use them!). Sawyer received a scholarship from the school's alumni association which is a welcome resource toward college expenses (he also received one from the Allegany County Area Foundation).

College orientation is next week! We have to go shopping to pick up a few things for it that will also be taken in August (sheets, towels, fan, bath caddy, etc.). In the meantime, Sawyer has been working part-time at Herrick Library at Alfred U. amidst various doctor appointments (specialist and chiropractor for his hips, regular doctor for TB testing, oncologist, dentist). Overall his summer is going well as he continues to wrap his mind around moving away in about 7 weeks (yikes!).

We got good news at the visit to the orthopedic oncologist last week. He has avascular necrosis (AVN) in his hips, caused by the steroids he takes as part of his chemotherapy regimen. The steroids manage to interfere with the blood flow in the bones, causing decay and weakening. Hips are a main target since they are so weight bearing and have so few blood vessels in the first place. He takes Advil to help with the inflammation but has had times when he was so sore and stiff it was hard to walk. I was sure the damage was really bad but x-rays showed only minimal so far. He's at a higher risk of developing arthritis in his hips because of this but has been put on Fosomax as a potential way to slow that down. He doesn't have any restrictions for activity, just needs to listen to his body. He's not been running but has taken to hiking the mile long path around our property each day, doing four loops each time. He is amazingly driven to stay in shape and overcome each of the obstacles thrown in his way.

He had to have the tuberculosis (TB) test done since his immune system is compromised. All part of college admission requirements....

The week after orientation we'll be heading to Lake George for our annual camping trip with a number of other families. We very much look forward to this trip every year! This time Sawyer is bringing 5 of his close friends for one last summer get-together before they all head off in different directions. They'll have their own campsite on the shore of the lake that's already been named "Boys Town" -- should have some adventures and stories afterward!

Onward and upward!

Just had to post the first day of kindergarten and the last day of high school!

  

 Sawyer officially finished all tests last Friday (physics regents) but was done with classes on June 16th. We had his graduation party on Sunday at the family farm; it was a beautiful day with good food and family/friends. It was a joint graduation party with a couple of his cousins, making it even more special. The graduation ceremony itself will be on Saturday at his school. He has about 59 students in his class. He's feeling pretty good about it all but understandably nervous about heading off into independence at college. We know he'll be fine but it will certainly be an adjustment!

Last High School Athetic Event

Saturday saw the last of Sawyer's high school athletics with the Track Sectionals. His team won! It was a great finish to the year for the team; not so great for Sawyer since his hips have decided they want to be ornery and give him enough discomfort that he was unable to compete. But he had a good day with his teammates and ended the day with a big smile.

The countdown is now on for graduation: June 28th. The boys in the photo with Sawyer have been his buddies since a very young age and his coach has been an outstanding role model and great supporter for the last 6 years. How fortunate that Sawyer is so blessed with such a strong network of people surrounding him, literally and figuratively.

Senior Prom

Actually it's a junior/senior prom, but that's beside the point! Sawyer and his friends had a fun evening posing for photos beforehand at the Miller Theater on the University campus and then enjoying themselves at the actual event (held at the Lake Lodge in Alfred; dinner followed by music/dancing).

Happy Day!

Birthday boy! Today is Sawyer's 19th birthday! We're so proud to have such an amazing young man for our son. Love him so much! He came home in a happy mood after a good day at school and a great workout afterward during track practice. After a yummy chicken & bisquit dinner brought home from the Collegiate and a Jill Grigg birthday cake (complete with lit candle!), he was off to spend a few hours with friends. So fantastic to see him have energy and in a good mood!

Spring happenings

Warm weather is certainly taking its time in coming! We were not happy to see snowflakes in the air this morning. Sawyer has been busy as usual. He finally started feeling better about a week ago after dealing with heavy fatigue for over 2 months. While the doctors were thankfully able to rule out a relapse, they can't determine if it's a virus, chemotherapy overdose, or chemotherapy-induced chronic fatigue that's been causing the low energy issues. We'll just hope he continues to feel better, although like many folks allergies are also wreaking havoc on his sinuses.

As much as he's been able, Sawyer has been practicing and competing on the track team. His senior trip is this Friday - Sunday to Philadelphia. And prom night will be May 4th. An Eagle Scout recognition dinner is coming up on May 14th, along with final exams for his calculus II course at Alfred U. and his AP Government class at school. So, nothing new as far as the usual busy spring schedule! We're just grateful that's he able to participate and be active! We feel like we're on the "final count down" - only 9 more trips to Rochester for treatments! January 2015 is our target date for the last one. Such a long time from when this all began October 2011.

Relief

This has been an emotionally tough week but we finally have an answer. Sawyer's blood test on Monday was inconclusive so the doctor ordered a bone marrow test (they use a thick needle to poke into a butt bone and extract marrow and a small piece of bone; luckily they use sedation). Once he mentioned a possible relapse as the cause our reactions were on high alert and we've spent the last 3 1/2 days being VERY worried.That's so draining. We went back this morning for the bone marrow test and had to wait until this afternoon for the preliminary results -- which are showing no leukemia cells! More in-depth testing will be done to confirm. But what a relief.

His symptoms have been fatigue, caused by low blood counts. The doctor says it's either a virus or too much chemotherapy, or a combination. At this point his body just needs time to work it out. Sawyer stopped taking his oral chemotherapy over a week ago and will most likely resume, at a reduced dosage, this weekend.

The smile to the day was that the nurses gave Sawyer one of the bone marrow needles after he asked for one (all new, unused, packaged). It looks like a little tool kit! He wanted to show his friends and then put it on his memento shelf in his bedroom. He also received a spinal needle that's used for the numerous spinal taps he gets. He was fascinated by it all which was a good diversion during a not-so-pleasant experience.

Now hopefully he'll start regaining his energy and can resume working out to get ready for track season.

As always, thank you to all for your love and support. We certainly can't wait until this is all behind us.

Drug toxicity

     I so wish I was saying "happy spring - isn't the weather lovely" instead of getting ready to get buried in snow again tomorrow. Guess it will make the inevitable spring that much better!
Mark has started tapping his trees and getting things ready to make maple syrup. Always a sign that spring is around the corner.
     Sawyer's been dragging the last month with low energy. At first we thought it was a cold or virus in his already low immune system that was taking its time getting worked out. But at his appointment at Strong Hospital yesterday and having still lower than normal blood counts, the doctor thinks he may be getting too much of one of his medications, causing a drug toxicity. They had increased his dosage 6-8 weeks ago because he had gained some (muscle) weight. He's going to not take that drug the rest of the week plus his antibiotic, and go back next Monday to have his blood counts done again.
     Sawyer spent last weekend in New York City with his friend Dan and Dan's parents. It was a great outing for him. They stayed in Chelsea, explored the Met, the Cloisters, the High Line, Chinatown, and more. I have a feeling he'll be going back once he's at New Paltz and can take a bus to the city (about 1.5 hours).
     Track practice has started. Sawyer was really hoping to be ready for it but with the low energy he hasn't been able to keep up with his running and working out. Hopefully the dosage issue will be the cause of the problem and it can be straightened out soon.
     I was talking with someone today about what was happening and he quipped that Sawyer's low energy level is still probably twice what his (and mine is). I completely agree after talking with Sawyer after work: he had come home early from school since he was falling asleep in class and not feeling well, but that was after going to gym class and doing 20 one-arm pushups! "Normally" he would have done the same with the other arm plus who knows what else. Oh the joys of teenage life.
   

Injury update

Fortunately, Sawyer's shoulder and thumb have been healing well enough that he doesn't need to go see a specialist. He was actually medically released to start wrestling again last night. His coach is understanding and isn't going to but him back in the line up just yet, but will give him more time to heal and slowly work back into things.

Yesterday was the first day of classes at Alfred U. and Sawyer was able to get into the Calculus II class. It will be much easier to take it now, following closely on the heels of Calculus I, rather than waiting to take it next year sometime at New Paltz.

This weekend in the school's semi-formal dance. Sawyer is planning on attending (going "stag") but he'll have a fun time. Hopefully between now and then I can take him shopping since he'd like a new dress shirt and tie for it, to go with the jeans he plans on wearing :) definitely semi-formal!

Busy week

Happy New Year! Seems like the new year is certainly off and running at a fast pace. We stayed home over the holidays and welcomed the new year together with some good friends while eating delicious food and playing cards.

After a fairly quiet medical-related time, we had reason to go to the emergency room twice (twice!) this week. Last weekend Sawyer tangled with a moveable goal while playing indoor soccer and lost the "fight," ending up with a nice cut and abrasion along his entire shin. Not wanting to take chances, we went to the ER to update his tetanus shot. Luckily the cut didn't need stitches and is healing nicely.

Yesterday was a day-long wrestling tournament in Hornell and he ended with a badly bruised/sprained shoulder and damaged ligaments in his hand (both on the left side - his writing hand, of course). We took him to the ER this morning to get things checked out since he wasn't feeling any better this morning after ice and Tylenol. Xrays didn't show any broken or fractured bones but can't show any muscle, tendon, or ligament damage so we need to make an appointment with an orthopedic doctor for further evaluation. Currently he's in a sling for the shoulder and a splint for his thumb. They will most likely keep him benched for the rest of wrestling season. Luckily he's not in major pain as long as things stay immobilized.

We go to Rochester tomorrow for his usual monthly appointment (time for another spinal tap) and will make sure to update his oncologist on happenings to see if he wants to do anything in particular (I'll be surprised if he does).

Otherwise, life is moving along smoothly. Sawyer, and hundreds of other kids, enjoyed the 2 extra days added to their school vacations because of the cold weather last week. He will be taking another class at Alfred University this semester as well. He got an "A" in Calculus I last semester and is hoping to take Calculus II. If he can't get into that, he will take a sociology class.

I will be beginning to learn the ropes of college financial aid as I fill out the FAFSA form and start to keep track of various aspects of "getting-ready-for-college-for-the-first-time" (for both mom/dad and kid). It's something we're all looking forward to! In the meantime, we look forward to welcoming my Australian cousins to New York; Sawyer will be able to help 15-year-old Matthew a thing or two about being a teenager in the States and will learn a thing or two, I'm sure, about Australia!