Getting Back on Track

We just learned that Sawyer's blood level are looking good for him to resume his treatments next week. He typically receives chemo on Mondays, but due to the holidays, we will be going up on Tuesday. The fact that Sawyer can resume his chemo treatments is crucial for keeping him in remission and moving towards the holy grail of being cured. That being said, we have enjoyed watching Sawyer's appetite and stamina return. It even looks like his hair is starting to grow back. Somewhat sadly, all this will come to a end, but the one week hiatus came at a good time allowing him to enjoy Christmas and New Year's Eve.

Zero

Clinic visit delayed

We were supposed to head to Rochester this morning for a day-long treatment and heavy chemo injection but Sawyer's blood counts aren't high enough for him to receive it. It's not a surprise - the nurse practitioner said that many patients stall at this point in the cycle. Sawyer will have another blood draw on Wednesday to see if he might get rescheduled for Thursday. In the meantime, he's going to enjoy his two day reprieve and continue to feel pretty good.

He's been enjoying his new puppy who has been given the name "Zero" after the dog in the movie Nightmare Before Christmas. We spent Christmas Eve with friends and they all offered a variety of good possibilities but Sawyer latched on to Zero after seeing a book of the story on the coffee table. The puppy seems like he's going to be learn quickly. He's great about doing his business outside when we take him, loves to pounce and play (and chew) and then crashes for an hour or so to recuperate. Our other dog, Nana, is not terribly thrilled to have a new housemate. She mostly just ignores him and runs quickly if he comes near. We have to assume that at some point she'll wise up to the fact that he's not going to hurt her, and could actually be fun to have around!

Merry Christmas from the McFadden Family

We want to wish everyone a very merry Christmas and equally merry 2012. While we still have much to give us pause, we are extremely grateful for so much more. To start with, Sawyer is still on the planet and receiving the treatment that has the best chance of keeping him here. Throughout this ordeal, we have an increased appreciation for family and friends that have, and continue to overwhelm us with kindness. From the mystery Santa that sent us the wonderful Christmas card to the Stacks for Sawyer miracle, we find it quite easy to take comfort and satisfaction with what we have; not wanting anything more than to hear the word, 'he's cured.' Our gift to you is the simple fact that the your kindness will be with us always and for you to take a minute, perhaps only seconds, to hug those you love and tell them just that, that you love them. Sorry if that sounded contrived; the holiday seasons have a tendency to bring out a little more emotion than usual.

On a semi-related note, we just returned from a three day trip to Lake Placid. We typically take this trip the week after Christmas, but due to Sawyer's treatment plan, this was not possible. While this was a considerably more sedate trip than past years, it was no less enjoyable. We noticed a lot of t-shirts and hooded sweatshirts with the letters 'LP' on them. For the past two months, these letters stood for Lumbar Puncture. It was nice to see that they can stand for something else.

Cheers to all!

Clinic (again)

Our visit to the clinic yesterday went pretty much as expected (for once) with no added surprises of blood transfusions. Luckily Sawyer walked out without a  headache or backache from the spinal tap (his last for quite awhile - hooray!). His stomach has been unsettled for quite awhile so we're trying to conquer that in addition to his weariness. He hoped to attend school this morning but unfortunately didn't sleep well last night and decided he was too tired to attempt it.

We are planning on heading out of town for a few days on Thursday -- two nights in Lake Placid. Keep your fingers crossed that our plans don't need to be changed and that Sawyer has some energy and an appetite of some sort to enjoy a trip. We probably wouldn't be going if he didn't really want to go. It should be a bright spot for him, ahead of Christmas, knowing that next week he gets hit pretty hard again with week-long doses of chemo.He's also looking very much toward the arrival of his puppy -- we will hopefully bring him home on Christmas Day.

Merry Christmas and Happy Hanukkah to our many friends and family! May the New Year bring blessings and sunshine to everyone's lives and hearts.

Transfusion Time

Sawyer was able to return to school this week. He attended half days on Tuesday, Wednesday and Thursday and seemed to handle the added activity pretty well. However, yesterday (Thursday) he had ablood test and the results indicated that he is critically neutrapenic. As you may or may not recall from a previous post on neutrapenia, normal folks have an ANC (absolute neutraphil count) of about 3000 with the safe range starting at 1600. Sawyer's ANC yesterday was 70. As a result, we were asked to bring him to Strong for a couple units of double red blood cells. These transfusions are absolute life savers, so make sure you give blood and if you don't mind, ask about giving double reds. Sawyer is at the hospital now awaiting additional lab reports before proceeding with the transfusion. Updates to follow.

Clinic Visit - 12/12/11

Sawyer completed another clinic day yesterday which was wonderfully uneventful. The lumbar puncture (LP) went well with few residual side effects. The hospital hires a massage therapist who happened to be on the pediatric oncology unit while Sawyer was undergoing the LP. Mark was approached by Hope (great name for anyone working in a medical setting) for a ten minute massage which was difficult to pass up. This is a really nice service that the hospital provides for parents. Apparently the massage therapist cannot work with patients for a number of liability reasons. Following the LP, Sawyer took a little longer than usual to come out of the effects of the anesthesia. With a thick tongue he talked about how he was dreaming that he was chasing someone with a gun much like a character in one of his video games. When the nurse noted some alarm about him being armed, he assured her that he is fairly balanced and needn't worry. He then started to re-tell the dream a second time before realizing that he had already done so once! Sawyer received three types of chemo yesterday: a shot in his spine, along with an hour long IV drip and one quick "push" into his port.

The other news is that Sawyer returned to school today for the first time since October 17th. He plans on only going for a half day for the rest of this week and maybe a couple full days next week depending on how he is feeling.

He's a Prince

Last Friday Sawyer was invited to attend the Alfred-Almond High School winter sports pep rally. According to his Guidance Counselor, Sawyer was going to be recognized in some manner. Sawyer's ANC the day before the rally was 500 which is in the critical range. Laurie contacted Sawyer's Nurse Practitioner who said that Sawyer could attend provided he wear a mask. Sawyer seemed genuinely interested in going thinking it would be a nice change of pace to see some of his friends. The assembly started by announcing the 'royalty' for each class. Sawyer's class (sophomore) eventually came up and he was recognized as the prince for his class. The ovation was boisterous and heart warming. According to Sawyer, the 'royalty' is selected by each class where everyone is eligible to win. He noted with some surprise that he received this honor thinking that since he was out of sight, he would be out of mind. It was nice to see that this was (is) not the case. If all goes well, we are hoping that Sawyer will be able to begin attending school for at least a half day starting next Tuesday. His treatment regime for the next two weeks appears to be a little lighter than the recent past. Sawyer is definitely looking forward to getting back to school to connect with his classmates and and get caught up on his classes.

Bright spot in the week

We had unexpectedly lost one of our dogs in July and had talked about getting a puppy at some point to keep the remaining dog company. Some friends of ours ended up with a large litter of puppies last month and Sawyer has now chosen one to bring home! The father was boxer-mix and the mother is a lab-mix; but none of the puppies look anything like the mother. The dogs will grow to probably about 35 pounds, so not too big. We'll go back often so the puppy can get used to us and so our dog at home can get used to the puppy smell and hopefully be more ready to accept a new face once he's old enough to leave the litter. Sawyer is thinking over names for the puppy but will probably wait until we have it for a few days to make sure the name fits the personality. At this point we expect to bring the puppy home after New Year's (he could come closer to Christmas but we're going to be out of town for a few days after Christmas and didn't think it would be fair to disappear on the puppy so soon after moving in!).

Latest clinic visit

The last couple of weeks haven't been the best as far as how Sawyer has been feeling: more nauseous, lost a few more pounds, backache and headache and low energy. Food smells also bother him.
Yesterday's visit to the clinic in Rochester went well. Sawyer had another spinal tap (two more yet to go this month). We're finally figuring out the routine to lessen the headache and backache from the procedure -- coffee and Tylenol right afterward along with a Thermacare back heat wrap and some stretches.
His blood counts were right on the margin yesterday so the decision was made to give him another blood transfusion (for red blood cells). We could have waited and come back later in the week for it but it made sense to just stay the extra time since we were already there. While it's time consuming (about 4 hours to receive the 2 units of blood) it's worthwhile since it gives him some color back in his cheeks and boosts his energy level. I've said it before but it's worth repeating -- kudos to everyone that donates blood, it's certainly put to good use!
The clinic at the hospital looks very much like walking into a doctor's office. There's the typical waiting room, receptionist desk, chairs, magazines and toys for the kids. Once we get called back (which is fairly quickly) Sawyer gets weighed, height measured, temperature and blood pressure taken and then we go into the typical exam room. The nurse then usually accesses his port (we put numbing cream on when we get to the parking garage to lessen the needle prick). We talk with the nurse practitioner who answers any new questions we have and reviews what's going to happen for the appointment as well as a look forward toward the upcoming weeks.
If he gets a spinal tap, he goes to another room where he lays down on a bed and gets hooked to a couple of monitors and chats with the nurse and doctor who will knock him out and perform the procedure. He doesn't even need to get undressed. Mark and I typically step out at this point since the room is small and we kind of get in the way with the various personnel trying to their jobs. Usually within half an hour everything is done and Sawyer is awake. He might lay in that bed for an hour to recover (best to stay laying down for an hour to lessen the headache) or he might move down the hall into one of their treatment/infusion rooms.
These rooms are about the size of the exam room but they have large recliner chairs for the patients and a couple other chairs for family, as well as sinks, a few cupboards and a television with DVD player. They try to make everyone as comfortable as possible since some of the drug and blood transfusions take multiple hours to infuse into the system. Sawyer was able to recline the chair and snooze for a bit until they were ready with the blood transfusion. Then he sat up, go hooked up to the IV and read a book on his iTouch for the afternoon. I went down to the hospital coffee shop in the late morning for coffee and a scone for him, and then out about lunchtime to Bruegger's Bagels to get lunch for both of us. I had to eat my Western bagel sandwich in another room since the smell of the onion and peppers was too strong for him.
I also had a book to read so the afternoon slipped away as we both were lost in our imaginations. Sawyer did a quick Skype to one of his teachers just to touch base and make sure the connection was working well for future discussions.
We're looking forward to the next couple of weeks since his chemo regime will be lighter (still have to go every week) and he should be feeling more like himself for a little while. He may even feel up to making an appearance or two at school. Probably some half days at first so he doesn't wear himself out too much. But it would be good for him to get back and catch up with everyone!

Songs for Sawyer

For those of you that were not able to attend the Songs for Sawyer concert, it was memorable. The orchestra led off and did a fine job, and then the choirs came on and were equally amazing. Every piece performed was absolutely wonderful, but the final song, Harvest Hope, set the tone for Sawyer, his parents and everyone that has been deeply touched by his (Sawyer's) situation. Here's a quick background for this song which may, or may not, be completely accurate. Visiting musicians, Dan Duggan and Peggy Lynn, were originally commissioned to write a song for the Saranac (NY) high school choir. At the time of this commission, the choir director was involved in her own battle with cancer. Ultimately, Dan and Peggy wrote the song, Harvest Hope, that had one simple message, 'hold onto hope.' With Dan and Peggy leading the choir, Harvest Hope proved to be very powerful raising both spirits and the roof. As we (Sawyer and his parents) head into the unknown of intensive chemo and the struggle to remain in remission, the one thing that we must do - the only thing we can do - is hold onto the hope that Sawyer's cure will be realized. The voices raised left no doubt that with the support of others and Sawyer's inner strength, this will indeed be the outcome.

On a related note, the event also included a free will offering. Based on the amount of support that we already received, we were not expecting too much. Once again we were taken aback and awed by the show of support. There is a lot to be concerned about in this world, but as long as there are places like Alfred, NY - which the world is chocked full of - there seems little reason to worry. It is an embarrassing understatement to simply say thank you to likes of Luanne Crosby for planning the concert, to Dan Duggan and Peggy Lynn for allowing Sawyer to be associated with the event, to each orchestra and choir member, and to the community for the ongoing kindness and generosity. However, that is exactly where we are and all we can do. So once again, thank you.

Sonja to the Rescue

Yesterday was the first day that we were supposed to administer Sawyer's chemo via his powerport. Mark went home during the noon hour to meet with the nurse to observe and learn. Upon arrival a nurse was not at the house nor did one call to say that she/he would be arriving anytime soon. Mark called Sonja, the visiting nurse assigned to Sawyer, who reported that she  was on her way. She arrived around 12:30pm and reported that she will come each day that Sawyer needs chemo via his port. This was very welcome news which became more welcome when she had a slight problem with the initial saline flush. Apparently the port was a little clogged requiring what Sonja referred to as a 'power flush.' Thankfully she was there to know what to do since we would have struggled (i.e. panicked) if we were flying solo and had to deal with this glitch.

Sawyer's physical condition remains fairly unchanged. He remains very tired, with minor headaches and a backache that is slowly getting better. This is understandable considering his body is trying to process three kinds of chemo this week.Watching the physical debilitation is very difficult, but we remain steadfastly hopeful if not absolutely confident that this too will pass.

Yesterday Mark met an AU student that was diagnosed with Hodgkins Lymphoma at the age of 16 (the same age as Sawyer). This remarkable young man noted that he went from 160lbs to 125lbs during the course of his treatment and is now in full remission and only one month from being declared cured.. His comments reflected the same level of self-assuredness that Sawyer has displayed over the past month. Such encounters are so very important, encouraging and welcome at this time when the silver lining is visible, but sadly distant and just out of reach.

The Consolidation Stage Begins

Yesterday marked the start of what the oncology unit refers to as the consolidation stage. The goal of this phase is to hammer potential leukemia cells and maintain remission. This period is marked with a variety of treatments that includes some light weeks and some very intense weeks. Yesterday was the start of a fairly intense week. Sawyer underwent a lumbar puncture and a dose of new chemo. The process started at 9am and concluded at 5:45pm. By the end of the day, Sawyer was not as nauseous as expected; however, his lower back seized up on him making it difficult to walk. Heat packs and Tylenol seemed to take the edge off, but as Sawyer noted the heat packs were not hot enough. According to the nurse practitioner, Sawyer may be able to mitigate this unwanted side effect by doing more stretching, maybe even a little yoga.

Leading up to yesterday and throughout the day, he seemed relatively fixated on hitting the Sticky Lips BBQ restaurant in Rochester for dinner. And despite a rather significant level of discomfort, he was determined to try a rack of ribs. We arrived at Sticky Lips a little after 6pm and Sawyer was not daunted by the 15 to 20 minute wait. He enjoyed a half rack of ribs, mac and cheese, and a cup of coffee. The consumption of coffee is highly recommended by his nurse practitioner because caffeine helps with his headaches and with moving fluids through his bladder. All-in-all the ribs were very good, but both Sawyer and Mark noted that they were not as good as our friend Bob's smoked ribs.

The ride home was not a typical one for Sawyer. It would seem that the combination of back pain, ribs and coffee (mostly the latter) had an interesting effect. Instead of sleeping for most of the ride home, he stayed awake the entire time and he didn't stop talking the entire trip. While his conversation often addressed his current state, it was never in a negative, plaintive or a 'why me?' frame of mind. Perhaps a pre-return trip cup of coffee will be in order more often.

For the next three days, we - hopefully with the assistance of a traveling nurse - will need to 'push' chemo treatments into his port. This a rather involved process that starts with a saline flush, followed by 'chemo push', then more saline to force the chemo into his blood stream, and finally a heparin flush to clean out the port and lines. In addition, Sawyer is on a fourteen day cycle of oral chemo. This may seem like a lot, but remember the goal is to hammer away at his system, hopefully eliminating any chance of relapse. Once he gets through this week, the next three weeks should be more tolerable since the chemo treatments are less intense. That said, he will have to undergo lumbar punctures for the next three weeks which seem to take a toll with head and back aches.We will be encouraging him to get out for short walks every day, hoping that will keep his muscles more flexible.

Sawyer continues to plug away at his school work  - working with his tutor almost every day as well as connecting to a few classes via his iPad.

A day of thanksgiving

We received wonderful news that tops off our Thanksgiving: Sawyer is in remission! Results from his bone marrow test on Monday have shown 0% leukemia cells at this point! We are very excited but know that the road ahead is still long. Most people relapse at some point in their treatment; it's a good fact to know to help mentally prepare ourselves, if needed. But for now, we are relieved, excited and ready to celebrate!

We hope everyone has a relaxed and wonderful Thanksgiving Day with their friends and family; and that each of you takes a moment to cherish life and all its blessings. We certainly will be doing that!

We sent a letter to the editor of Alfred Sun newspaper to be published in this week's edition and wanted to share it with everyone since not all read that paper (which is definitely worth its subscription price).

"A Letter of Thanks"

At this time of Thanksgiving, our family has much to be thankful for and we want to express some of those sentiments to the members of the Alfred and Almond community as well as many in area communities. As most of you know, Sawyer was diagnosed with leukemia last month and was immediately hospitalized to begin what will be a three-year long treatment (fortunately, most of it will be out-patient).

We were immediately taken under the wing of a fantastically supportive community of friends, family, students and folks we haven’t yet met. We are truly blessed to be part of such a caring place. We are thankful to have a doctor who recognized the problem, an accommodating school system working to ensure Sawyer stays current on school work, an amazing facility and staff at the Golisano Children’s Hospital in Rochester, and friends and family willing to give up their time to keep things running smoothly at home and at work, and so much more.

The “Stacks for Sawyer” fundraiser was quickly planned and then attended by over 1000 people. Numerous volunteers devoted hours of time organizing the event and lining up others to decorate the room, serve food, bus tables and sell raffle tickets for an amazing array of donated items. A special fund was set up for donations and other fundraising benefits were put into place (the sale of two different bracelets, specially designed t-shirts and an upcoming concert). What more can a family receive? How about dinners brought to our house four times a week, or hundreds of get well cards, or donations of gift cards and cash to help offset gas and food, or the purchase of an iPad to assist Sawyer with school work and to help entertain him as he is/was confined to the hospital and home? Our list seems to be endless – we are truly blessed and eternally thankful.

Maybe we can’t all save the world or single-handedly solve global issues but we can all make a difference to individuals and the quality of life in our community. If anyone ever doubts the power of community and the effect it can have on someone’s life, Sawyer stands as a testament to the strength of that power. One of the greatest gifts he has received from this experience is the awareness of that phenomenon and the knowledge that he will be able to do the same for others in the future. What better gift can parents want for their children? Again, thank you to our community for setting the example and for setting the bar high.

During many of our cold winter days it’s easy to think it would be nice to live in a place where the “Sun comes out [more than] once a week” but after the past month we wouldn’t think of living anywhere else! We look forward to being able to continue to be part of this community and to being able to give to others what has been given to us.

Laurie, Mark and Sawyer McFadden

Home again, but a bit sore and definitely tired

Not having experience with many emergency rooms I wasn't really prepared to walk into a pediatric one filled with very unhappy kids. We were a bit tired when we arrived about midnight and not totally prepared for an acoustic assault as we stood at the check-in desk trying to filter out the noise (both for the decibel level as well as the emotional tug of knowing kids were in pain).
In order to check for possible infection the hospital needs blood from the patient -- something we assumed would be quick and easy. We had put numbing cream on Sawyer's port when we arrived and thought it would be just a normal poke into his port, get a sample and let us head out the door to a hotel room for the evening.
Instead, we discovered that the emergency room nurses don't have much experience with port draws and they need blood from the arm as well to make sure the infection isn't in the port itself.
The arm IV fortunately went smoothly but after a couple failed attempts to draw from his port the nurse called in the experts from the oncology unit. They exuded so much more confidence that it was calming; but there was still an issue with his port not cooperating and in the end Sawyer was poked about 6 times. Needless to say his port site is very tender now.
As Mark reported in his post yesterday, they finally got done with everything a little before 5 am. We could have left the hospital and found a hotel for a few hours but that meant they would need to de-access (take the now-functioning needle from the port) and he'd have to be re-accessed (poked again) for his regularly scheduled appointment at 12:30  in the out-patient clinic.
So we opted to stay in the ER and get a couple hours of sleep; fortunately they were low on cases and there was no rush for us to vacate the room, and thankfully all the unhappy children had been treated and had left. Since Sawyer was scheduled for a spinal tap and a bone marrow test he was not allowed to eat food after 7 am and no liquids after 11 am. I had him eat something about 4:30 am so that he'd have food in his stomach and could then sleep without me needing to wake him shortly before 7 to eat.
We were woken up about 7:30 am with a new case entering the emergency department - another young child crying, scared and loud. I quickly ascertained through our time there that I would not be cut out to be an employee in this type of place needing to emotionally handle kids in need.
We left the ER around 10:30 am and headed to the hospital lobby's coffee bar. Sawyer was desperately hoping that he could have a vanilla frappe (couldn't that count as a liquid? After all it does just melt in his mouth....). I checked with the clinic and they sadly reported that it wasn't to be. So he settled for a cup of coffee. He asked me if he could put a little creamer in it and I thought it was okay (we later found out that milk products are considered to be solids and are not to be part of a liquids-only diet -- learn something new every day! Fortunately it didn't delay his procedure since he had ingested such a small amount).
We sat in the clinic waiting area for a couple hours before the appointment but it was quiet and comfortable. We ran into a couple other local families who were there with their own kids for scheduled appointments. It certainly is discouraging to be realizing just how many families are dealing with health issues for children. Guess I was extremely fortunate as a kid to not have any problems and to not be aware of anyone else with any of this level.
Sawyer is now home but sore in multiple locations: tender port site, sore spots from the spinal tap and bone marrow needles and aching knee joints from the prednisone withdrawal. Luckily he has a quiet day at home to rest and has adequate pain relief and heating pads to help.The rest of the week will hopefully continue the same way. The visiting nurse will come sometime over the weekend for the next blood draw and he and Mark will go to the next appointment in Rochester on Monday.

One thing we were disconcerted about throughout this is how to know if we can rely on our digital thermometers at home. We had been told to buy any $5 one and to use it instead of a mercury thermometer. I picked up a couple of $10 ones (they give a much quicker read-out) but we've discovered they don't read the same temperature. There's a least a full degree difference in their readings; even taking a temperature three times in a row with the same one gives a different answer each time. I asked the nurse practitioner about this and she said it's just the nature of thermometers. She suggested that we stick to using just one to help give a more consistent picture. Their office doesn't question the readings; they just take them for face value and go from there. I understand the answer but am not sure that I'm 100% comfortable with it.

On a different topic: the UV light system for the water at our house was installed late last week! One less thing to worry about.

(Sorry for such the long post - I promise we won't report out in such detail for future trips to the hospital, but since this was the first one there was more to share.)

Spiked a Fever

At about 9:30pm last night Mark gave Sawyer a kiss good night on the top of his shiny bald head and noticed that he seemed a bit warm. A flurry of temperature readings ensued which resulted in a range of 100.2 to 100.6. We called the on-call doctor who instructed us to bring him in to Strong's Pediatric Emergency Department. The physician noted that since Sawyer's most recent blood counts were pretty good, there was no need to feel rushed or panicked. Laurie was planning on taking Sawyer to the clinic this morning anyhow, so she volunteered to take him to the ER last night. They quickly packed and were out the door. About 2:30 am, Laurie sent a text to report that the highest temperature Sawyer had in the ER was 99.5, so there was no need for him to be admitted but he would receive an antibiotic as a precaution. There was no sign of infection in his blood which is a good thing. It is at times like this that we are grateful for the kindness and generosity of others since it's hard to guess, or imagine, how many such trips and middle of the night hotel rooms we will have to secure in the coming months and years. We did try to connect with the Ronald McDonald house, but they do not take admissions after 8pm.

It is now 8am and Laurie just reported that Sawyer was not discharged until 5am. They stayed in the ER where they got about 3 hours of sleep. Through it all Sawyer does not complain and does not  flinch when beset by these little, or potentially big, disruptions. Instead, he remains intent on his goal of being cured and 'kicking this thing in the butt.'

The Dark Side of Prednisone

For the most part, this has been a wonderfully uneventful weekend. On Friday, one of Sawyer's best friends stayed over night. It's amazing what we (his parents) took for granted in the past because it is particularly enjoyable to watch Sawyer behave like a fairly normal kid. He and Zach played video games, talked and laughed. In addition to their normal socializing, Sawyer and Zach spent a couple hours on Saturday digging into the back log of assignments for his computer programming class. Sawyer has amazing friends who have helped him with his homework, shaved their heads as a sign of solidarity and designed and sold t-shirt as a fund raiser. We are not sure where we would be without this impressive cadre of buds.

As many folks are aware, prednisone is not all sunshine and roses. Sawyer took his last dose of prednisone on Thursday and has been increasingly hobbled over the past several days. Apparently one of the withdrawal symptoms is joint pain. Sawyer's knees have been giving him fits. The pain keeps him awake at night and makes it difficult for him to ambulate comfortably. He walks rather stiff legged and finds some relief when he applies heat (the hot tub is coming in very handy right now). That and a little morphine helps to take the edge off. Hopefully tonight he will sleep a better than the past two nights.He needs the sleep to stay healthy and fight off infection. Fortunately he is not receiving a full dose of chemo tomorrow so his immune system should not be compromised (i.e. he will not be neutropenic).

On a related note, tomorrow is a fairly big day. He will undergo a bone marrow biopsy and a lumbar puncture (to have chemo inserted into his spinal fluid). We will not get the results of the biopsy until Tuesday or Wednesday. As note in previous posts, we expect (hope and pray) that the leukemia cells have been sufficiently 'blown up' and no longer present.

A very special evening

Last night Sawyer attended the Alfred-Almond fall sports award event at his school. It was the first time he was back in school since his brief visit with the wrestling team over a week ago. Wearing a surgical mask and with hand sanitizer at the ready, he was warmly greeted by many. The evening proceeded as they have in the past, recognizing the many successes of the fall sports teams. Of note, the girls and boys varsity soccer teams and the girls varsity tennis team won sectionals. The boys soccer team will make their first appearance in the state tournament this weekend - go A-A! Anyhow, the time finally came to recognize the boys JV soccer team. Coach Mac called down the boys by name and when they got to Sawyer,  the audience began to clap, and did not stop. The school superintendent stood and shouted, "way to go Sawyer," which was followed by everyone standing and applauding. This was a beautiful moment, but not to be out done by what was to follow. Coach Mac had only one award that night and it was for sportsmanship. As he began to describe the recipient, he talked about the courage of this young man in the face of daunting challenges. Then coach Mac began to struggle, his words strained through tears continued to present this person as a excellent student, a athlete and teammate. Ultimately, it was announced that Sawyer was to receive the award. Sawyer graciously accepted the award and told coach Mac how much he appreciated playing for him for the past two years. The applause that followed was enthusiastic and genuine.

It's hard to say how much Sawyer appreciated the gravity of this moment. As in the past, he remained seemingly unflappable and a bit surprised by the attention he is received. In fact, as Sawyer and his parents were leaving the school, he commented that he really didn't do anything to deserve the award. He was assured that indeed, he has paid dearly for this award and will continue to do so in the months to come. His approach or mindset can best be described by his comments to those that greeted him before the event began. More than once he was heard to say that he is 'kicking leukemia's butt.' We are all hoping and praying that he will continue to do so and continue to be a remarkable young man. Our manta is and will continue to be, Sawyer, get well.

Second week at home

Things have been going well  - yay! We were a bit nervous at the idea of having Sawyer come home and being worried about all the little things we need to think about (fever, exposure to germs, sanitizing, medicine schedule, general worry, etc.) but so far everything has gone smoothly. His blood counts were strong at the beginning of the week and he's continued to feel generally well (although additional rest is still valued). He's working through school work, trying to figure out what still needs to be completed in order to stay on top of everything. His tutor continues to come every day after school for a couple hours and has been a big help.

We stopped in to the boy scout meeting last night so that Sawyer could check in with everyone as well as offer his thanks for their outstanding service at the Stacks for Sawyer event. He'll make an appearance at the Fall Sports Awards tonight at school as well to make a short appearance with his soccer team when they are called down front to receive certificates and pins. He wears a mask as a precaution but doesn't seem daunted by it.

The visiting nurse will be by again this morning to draw blood and do an overall assessment. She has a very outgoing personality and is very likable - gives Sawyer a bit of relief for the day with some company although she's not your typical guest in that she has to poke him with a needle every time!

We have also been the benefactors of some very delicious meals -- thank you to all who have signed up to provide one during our first month of adjusting and trying to catch up after being off work and out of school for almost 3 weeks.

Given that we seem to be in a schedule of sorts, we'll probably start posting on the blog about once a week -- most likely Tuesdays, after we've had a chance to make the trek to Rochester for the Monday appointment and visits. That way our faithful readers will have a better sense of when to check back for a new posting.

First Clinic Day

Sawyer went to his first out-patient clinic today where he received his last dose of vincristine. This is the next to last treatment in the induction phase. Next week he will undergo a lumbar puncture (spinal tap) and a bone marrow biopsy. According to his attending nurse practitioner, all indicators at this time point to him being in remission. In other words, they don't expect to find any leukemia cells in his biopsy. While this is indeed welcome news, his parents are holding their breath awaiting the results. Assuming all goes well next week, Sawyer will enter a six or seven month consolidation phase. During this time, he will continue to receive weekly doses of chemo along with four, one-week in-patient treatments that will occur every other week sometime in February and March. The successful completion of the consolidation phase will result in Sawyer entering the much desired maintenance phase. We hope this will lead to a full remission followed by a declaration of being cured in about five to six years. It will be at this point that we will finally be able to exhale, relax and feel a sense of relief.

Sawyer was taken aback when he learned that he weighs 126lbs. This is well below what he weighed last summer, ~142lbs. He also got a look at himself in the mirror without his shirt and was equally shocked by the loss of muscle mass. This fueled his post appointment desire to stop in at a Friendly's to down a couple quesadillas, a bowl of soup and half a turkey club sandwich. The nurses and nurse practitioner assured Sawyer that once he reached the maintenance phase, he should be able to quickly regain muscle.

We are home now where Sawyer quickly fell asleep on the sofa after a cup of tea. The combination of the chemo and several nights of disruptive sleep have taken their toll.

T-shirts

The first order of t-shirts has arrived! Modeling the shirt is Sawyer's good buddy (with his freshly shaved head in solidarity) whose idea it was to sell the shirts as well as the one who designed them. How many teenage boys would think to use a Ralph Waldo Emerson quote? Pretty impressive. He's with his older brother, also a great friend. Thanks guys!

(Since I'm not sure just how well you can see the text on the shirt: the orange ribbon on the front has SRM - Sawyer's initials - and the back says "We acquire the strength we have overcome" Ralph Waldo Emerson)

Still doing okay

The visiting nurse stopped by the house yesterday to draw blood and we got the results today - and the numbers are great! In the world of folks with white blood cell issues, the ANC count (remember it has to do with things called neutrophils that fight infection in our bodies) is an important number. Anything under 500 means you're "severely neutropenic" or in real person language, means your body really has nothing in it to fight off any form of bacteria or infection.

On Monday, Sawyer's ANC count was 100 - I was a bit surprised they still discharged him from the hospital - but that number is not alarming necessarily in his case since it's to be expected when you're getting medicines that are virtually wiping out your immune system. To help put it in perspective, most of us would have a count of at least 1700.

His count today was 900 - a nice improvement which means his body is not quite as susceptible and is building its white blood cells back up. But it's fully expected that his count will go up and down throughout his treatment cycle. It just means that we need to be extra careful with sanitizing things, washing our hands and making sure to avoid people who are not feeling well.

We have been receiving delicious meals from friends throughout the week and are very grateful.  It's a big help as Mark and I try to catch up with things at work and at home after not being around for a few weeks. Not to mention that we get to try out some new recipes and tastes! Hugs go to Becky for taking the time to arrange the schedule and deliveries.

Blog statistics

It's fascinating to be able to view statistics for this blog. It's only a few hits shy of having 11,000 views! The daily average is about 530 hits. Puts just a little pressure on us to make sure we give you some quality news!

Not only can I see the number of hits but the system shows what types of devices (iPad, smartphone, Windows computer, etc.) folks are using to view the blog as well as what browser (IE, Firefox, Safari, etc.).

And, I can see from which countries people are logging in, and the list is pretty amazing: United States, Canada, Australia (hi Susie!), Russia, China, United Kingdom, Germany, Denmark, Hong Kong and India.

Our lives are touched and enriched by so many caring people -- what a blessing.

Shared Shearing

This evening Sawyer stopped by to say hi to the Alfred-Almond wrestling team and to have his head shaved by the school superintendent. The shaving went well and when Sawyer was finished, five guys immediately volunteered to have their heads shaved as well. Superintendent Calkins had time to shave only two more students promising the others that he would take care of them tomorrow. Coach Cook was very understanding since this process cut over 30 minutes (pun intended) out of the practice. Sawyer remains unflappable throughout this process; his only regret being that he cannot go to school to serve as the reason why his buddies have shaved heads.

In other news, Sawyer's tutor showed up for their first meeting today. The initial goal was to determine what Sawyer needs to do in order to get caught up on his assignments. Sawyer's other goal for today was to set up a Skype account (which he did) so that he will be able to observe his French class. One fear is that our Internet connection may not be sufficient for live streaming. Past attempts to Skype have resulted in a choppy connection.

Sawyer reports that continues to feel pretty good. However, he did go for a short walk that apparently tuckered him out resulting in a two hour nap. Tomorrow the visiting nurse will stop by to draw blood. We are not sure how long it will take to get his blood counts, hopefully by the following day.

Home Sweet Home

Sawyer had a good first day at home yesterday. He spent a good part of the day on the couch trying to get his ears to unplug. It appears that one side effect of his treatment is a persistent feeling that his hears are plugged which he finds very annoying. Apparently it makes it difficult for him to hear others and to speak clearly. Lying prostrate seems to be the one thing that provides some relief. Hopefully when he switches up the current medical protocol, this will clear up. That being said, if this is the worse side effect, then he is fairly fortunate. Sawyer was coaxed to attend the end of the A-A girls soccer game last night. We watched about twenty minutes of the second half before Sawyer began feeling a little cold and tired. Not wanting to push our luck, we headed for home. It also worked out well that we stood along the fence at the end of the field where few people were located and it was an amazingly nice November evening. We also learned, much to Sawyer’s delight, that Mike Statt will be is tutor while he is out of school. Mr. Statt will start tomorrow after school. According to Sawyer’s guidance counselor, Sawyer has a decent amount of work to make up, but like every other challenge he has been faced with so far, Sawyer is absolutely certain that he can complete the required work within the required timeframe. Today would have been Sawyer’s first wrestling practice and while he can’t wrestle this year, he does want to stop by the practice to say hi to the team. We have also arranged for him to have his head shaved by the school superintendent. His hair is thinning fairly rapidly at this point, but he should have plenty left for the ceremonial shaving. Finally we want to thank several wonder folks in the Alfred area for helping us with meals over the next few weeks as we try to settle into our ‘new normal’ life. Last night Sawyer and Mark enjoyed cheese broccoli soup, whole grain bread and ice cream – very yummy.

Yes, he's home!

This morning was very exciting as we packed up everything in the hospital room to go home. It's a good thing we had already sent home a couple very large loads since we wouldn't have been able to fit everything in the car otherwise! It's amazing how much stuff accumulated in 3 weeks (reminded me of moving out of my dorm room at the end of a year and wondering how so much fit into such a small space). We needed to go to the pharmacy in the hospital to get a bag full of medicines to bring home; Mark was in line waiting and sent me a text saying it was a zoo and how grateful he was that we have the Alfred Pharmacy to deal with on a regular basis. Even with insurance covering some of the cost, it was still sticker shock for us! We spent time with a nurse practitioner going over each medicine making sure we knew what it was for and when it should be taken. As we waited for the discharge papers to come, a few of the staff (including one of the cleaning guys) stopped by to send us home with good wishes. We were finally able to walk out the door around 12:30 pm. Sawyer had been pining for a cheese quesadilla and chicken noodle soup from Friendly's so that was our first stop - luckily Mark knew where one was just a short distance from the hospital. And even better it was amazingly empty for lunchtime so we felt it was okay for Sawyer to go inside to eat. Our second and final stop was at the Almond Library since the director there had just received her shipment of bracelets to sell as a fundraiser - they are embossed with the words "Sawyer's Soldiers" - stop by the library if you want to pick one up (tomorrow, Election Day, would be the perfect time since the library is holding a soup luncheon and basket raffle). Sawyer can have visitors and go to other houses, but he'll have to avoid places with any concentration of people. We're waiting to hear from the visiting nurse for a visit tomorrow to open the case and get things in place for the weekly visits. And we'll hear soon from the school about a tutoring schedule. Sawyer's hair is starting to shed more now and he's ready to get it shaved since he's tired of it falling into his face. He's asked the school superintendent to do the honor of shaving it for him and feels that he won't be bothered much by having it gone.

Stacks for Sawyer fundraiser

So... how can I adequately describe today, other than being completely overwhelmed by the beautifully organized and decorated event and by the sheer number of people who came to support it. Estimates are that at least 1000 people were served for the brunch which was a tasty spread of home fries, scrambled eggs, sausage, pancakes, pastries, cereal, milk, coffee and juices. About 115 baskets and/or items were donated for the raffle and the bracelets quickly sold out. Additional orders were placed for more bracelets as well as t-shirts.

Mark and Sawyer were able to view the event and talk with many folks through a Skype connection -- it was a wonderful way to include them and let them have a chance to catch up with many people we haven't seen in awhile,.

We have so many people to thank for their time and effort in putting the fundraiser together and making it successful. They put in many, many hours to get ready as well as a full day working today. We love them all!

Ultimately what everyone gave Sawyer is the precious gift of growing up knowing that he is loved unconditionally -- it's priceless that he will have that as part of his lifetime experience. He fully appreciates what's been done (and that appreciation will mature over time) and will, in the future, willingly give back to whatever community he is part of, knowing full well just how much difference something like this makes to a family in need.

We all feel truly blessed and can only say "thank you from the bottom of our hearts" -- words that don't fully express how we feel but they will do for now until we can articulate differently.

Prednisone-induced craving satisfied

Sawyer and Mark went to Joe's Crab Shack with friends Bob and Dan Woughter where Sawyer ordered the Seaside Platter. For someone that never liked (or more truthfully, never even tried) seafood, Sawyer dug into the platter with gusto. He loved the mollusks, liked the shrimp, was okay with the scallops and didn't care much for the tilapia. He also ate several popcorn shrimp then topped off the meal with a piece of cheesecake. All-in-all, he enjoyed the meal, but feels that his seafood craving has been satisfied for a long time.

As noted in the previous message, Sawyer had the needles and tubes removed from his port. He is finding the incision and the port itself fairly uncomfortable. No doubt as the incision heals, he will get used to the port. He pretty much has to since he'll have it for the next three years.

This evening he is lounging in a seafood-and-cheesecake-induced-stupor while watching the history of ice cream on the History Channel. He's also received some pretty funny homemade videos from his crazy "little brothers" that are helping to keep a smile on his (and his parents') face.

Today's update

Another one from Mark today:

"Sawyer went to bed last night feeling a lump in his throat and woke up a bit flush with a small rash on his arm and a rapid heart beat. The attending doctor and nurse didn't seem to be too overly concerned about these developments, but it is something they will keep an eye on. His prednisone-induced cravings have not let up. This morning he reportedly downloaded an app of recipes and cooking ideas. He now has a short list of 35 recipes that he would like to try when he gets home. As he explained to the nurse, he is going to have a bit of free time on his hands over the next six to eight months so he may try taking up cooking. Today's obsession remains seafood. We plan on going to the local 'crab shack' with a couple good friends this afternoon. If the restaurant is too busy, we will have to get the meal to go.

Around 11am this morning Sawyer received another dose of chemo and had the needles removed from his port (i.e. he was de-accessed). It's the first time he's had all the needles and tubes removed from his port and it made him feel a little weird. In fact, he noted that he was feeling a bit anxious about being reaccessed on Monday before he leaves and twice a week for the foreseeable future. He acknowledged that this was the first time he has expressed feeling anxious about his situation. The anxiety didn't last long due to a timely phone call from a young lady that he was friends with in elementary school and hasn't talked to since the fourth grade. They chatted for over an hour which included lots of laughs, memories and catching up - just what he needed.

That's about all from our temporary home in Rochester. We hope to Skype into the Stacks for Sawyer event tomorrow and to be back in Alfred soon."

Mark and I feel a bit anxious about losing the safety net of the hospital by having Sawyer come home but the staff have repeatedly told us to call with ALL questions and concerns. They have a number to call that is covered 24/7. We know the first week we'll probably be overly conscious and worried but will settle into a comfortable routine thereafter.

18!

Not just 3 or 4, but 18! That's the number of baskets created by donations from the teachers and staff at Alfred-Almond School for the basket raffle at tomorrow's fundraiser. 18!

So not only do our kids get to go to the school that's ranked #22 out of 450 schools in Western New York for academics, but they also attend a school with an extremely caring and supportive group of employees.

And Sawyer says "Congratulations, way to go" to the boys soccer team that won the Section Five championship last night. He wishes the girls team the same luck as they vie for the title tonight.

Update from Dad

Another update brought to you by Mark (I'm in Alfred today so not at the hospital for any breaking news):

"The big news is that his nurse for today is Kim who had the exact same diagnosis as Sawyer when she was 21. We asked her a bazillion questions and learned that she has been in remission for six years which means that she is considered cured. She reported that her protocol included radiation which does not seem to be in Sawyer's near or distant future and that she was stuck in the hospital for just shy of 28 days. Kim was a political science major thinking about going to law school but after her diagnosis, she decided to enroll in the accelerated BS in nursing program at the University of Rochester. It was very refreshing for both of us to see such a potentially positive outcome. Of course Sawyer has no doubt that this will be blip, albeit a big one, in his life that he will overcome and move on similar to Kim.

Following the in depth conversation with Kim, Sawyer spent a good portion of the morning trying to decide what kind of sub he was going to have for lunch. In between outlining possible sandwich variations, he went over to visit the A-A student who was injured in a soccer game. She seems to be doing well and her parents hope that she will be discharged today. Sawyer worked with the tutor for about two hours this morning and it seems he is doing fairly well keeping up with most of his classes. Dr. Andolina stopped by (without the residents) to check on Sawyer and he remains pleased with Sawyer's progress. Dr. Andolina confirmed that Sawyer will most likely be discharged on Monday. He also talked about the slog that the next eight months will be for Sawyer. In our conversations with Kim, she recalled this being a difficult time. She also recalled constantly washing her hands and using purell. Much to Sawyer's delight, Dr. Andolina gave Sawyer the thumbs up for another day pass. Upon Dr. Andolina's departure, Sawyer resumed working with the tutor then eventually admitted that he was having difficulty focusing on his work due to a pre-occupation with lunch. He finished a couple of math assignments, quickly changed his clothes and we were out the door.

We went to Subway where he inhaled a sub followed by a McFlurry at MacDonald's. Upon arriving back at the hospital, he began complaining about his ears being plugged and having a headache. He took a couple Tylenol and is now curled up in bed for an afternoon nap."

So, there's another day in the life of Sawyer at Strong Hospital - with any luck those days will come to an end on Monday (at least for awhile, until he has to be re-admitted later in his treatment cycle).

Ditto

Today will be pretty much a repeat of yesterday -- feeling good, going out for a few hours to walk around, lunch at Subway. I left the hospital this morning and will be at work all day and home for the weekend. Mark is back at the hospital in my place. We've started taking loads of stuff home in anticipation of discharge on Monday. Sawyer will get his next chemo treatment tomorrow and hopefully he will tolerate it as well as he did last week. My to-do list while I'm home will be to see if I can get a Skype connection set up in the campus center so that Mark and Sawyer can see some of the event there on Sunday.

Another good day

Finally, a day with not much to report. Sawyer is feeling really good, woke up again with food plans in place for the day. He hasn't slept great the last couple nights so they're going to give him some Benedryl tonight to see if that helps. But his energy level has been fine during the day. He's also had issues with clogged ears but they think that it's due to seasonal allergies that might be inflaming his inner ear tubes (getting Claritin and Flonase for that). So, for a kid who generally shuns all offers of OTC medications, he's really full of a variety of things now!

He got a pass out of the hospital again today and we walked back to Subway where he refined the sub he created yesterday and enjoyed the new combination much more today. Then it was off to McDonald's for an Oreo McFlurry which also hit the spot.

The discharge nurse has gone over details with all of us for when we go home (still planned for Monday). She was able to show us a sample of the port, see below, that Sawyer has in his chest as well as things we need to know and think about once we're home.

This is the port Sawyer has -- it's a dual one so that they can draw blood at the same time they inject medicines or they can give two medicines at the same time if needed. It's in the right side of his chest, under the skin, so it won't be readily noticeable when he has his shirt off (although you can see where the tube goes up and over his collar bone). The center circles are a thin type of membrane and that's where the needles are injected. A numbing cream is applied first to help minimize any pain.

And we ask for good healing thoughts and prayers for another Alfred-Almond student admitted just across the unit from us today - she was injured (broken bone) in her soccer game last night. We hope her stay is short and her healing is quick.

Good luck to Alfred-Almond

Sawyer would like to send his best wishes and a shout out to the Alfred-Almond boys' and girls' soccer teams who are both heading to the Section Five Finals! Good luck to them!

We got outside for a walk today (first time out of the building in 2 weeks) - what a beautiful day and warm temperatures. We had lunch at Subway and then headed to Wendy's for a frosty. I made him "suffer" for about 15 minutes while I popped into a consignment shop on our walk. I only tried on 3 shirts and bought one thing after a pretty quick tour of the shop. I told him I'd go back tomorrow without him and he couldn't understand why I needed/wanted to since, in his estimate, I'd been in there at least half an hour (which by his standards is 3 times as long as anyone needs to be in a clothing store, so why in the world would I need to go back tomorrow?!).

There was a nice article in the Hornell Evening Tribune tonight about the fundraiser happening on Sunday. Mark and I need to give a shout out ourselves to the fantastic friends who have organized it and to everyone who has donated something or volunteered to help. In this time of always seeing depressing news stories, this is one to lift hearts -- a caring community coming together for a common cause (sorry about the alliteration!). And other friends and family are pulling together some other helpful services that will continue to make life easier for us after we return home. Now that sounds good -- home.

Day Pass

Sawyer woke up this morning craving a sub from Subway (and not just your typical one - he's ready for some strange combinations thanks to the prednisone drug he's on! He even mentioned wanting to eat lobster and shrimp this morning -- and he's never wanted to even try seafood.). He asked the doctor for a pass to leave the hospital at lunchtime to walk over to the Subway a few blocks away. Yay! So glad he's ready to get out. The doctor is happy to have him go. He'll need to wear a mask until he gets outside then will be free and clear.

He's definitely looking forward to going home and being able to be on his own schedule. No one can miss being woken up 2-3 times each night and then being checked out by nurses throughout the day. Sawyer has been very patient and pleasant with all the staff and thanks them for checking up on him or helping him out. We really have no complaints but knowing that discharge is getting close makes it harder to stay!

In general, the food from the hospital is quite good. Mark and I get a meal voucher every day from the Ronald McDonald House upstairs in the hospital and can use it toward ordering off the hospital room service menu. Otherwise we eat food we've picked up at Wegmans (and can heat in the microwave in the unit's kitchen) or we eat food that's been dropped off by one of our friends or we pick up something from one of the restaurants nearby. Sawyer generally eats toast and cereal from the unit kitchen for breakfast and then asks for something from a restaurant for lunch and then orders from the hospital for dinner. He's looking forward to their Wednesday night stir-fry special tonight.

One thing we've learned while we've been here is Sawyer's blood type. A few years ago I was filling out a form for a summer camp and it asked for his blood type. I thought, no problem, I'll just check on his immunization record. No, hmm, okay then must be on his birth certificate. Ok, guess I call the doctor's office. Not there either. Apparently there was never any reason for them to determine his blood type so it was an unknown. It wasn't a problem, I left the form blank and haven't given it a second thought. But we now know his blood type is the same as mine, A+. And we learned that it's possible that it could change to A- throughout this process. But don't ask me why!

I was able to catch up with a friend this morning who was at Strong for her own appointment. She's in the middle of chemotherapy herself for breast cancer. It's been too long since I've seen her and I really enjoyed having a coffee and catching up. She shared with Sawyer her hairless head as well as the port site in her chest and talked with him about her own path through chemotherapy.

Mark went home this morning and is working today and tomorrow. I'll go to work on Friday and stay home until after the Stacks for Sawyer fundraiser on Sunday. It will give me a chance to do a little bit of cleaning in Sawyer's room before he gets home (like most teenager rooms it can stand a good overhaul!).

The next month

We've received a medication and clinic visit schedule that outlines the next month for us, and gives us a clearer picture of what to expect when we get home. Sawyer will be out of school until at least Thanksgiving; he may get a few days in at the end of November but more likely will be back at school more regularly in early December. He'll get tutored at home as needed. Mark and I will plan on returning to work and splitting the Monday appointments in Rochester (some will be half days, others will be more full day visits).

We'll get a more extensive schedule tomorrow that will outline medications, appointments and planned hospitalizations over the next 6 months or so. Apparently there will be a few times that he'll need to be in the hospital for a few days, in addition to times that he comes down with a fever and has to go back in for a few days as well.

There are six prescriptions waiting for us in the hospital pharmacy -- kind of hard to believe that our home counter is going to switch from never having prescription meds to being covered with various bottles and medical paraphernalia, along with bottles of hand sanitizer and digital thermometers. We'll also need to be touch with the school nurse to find out the steps needed to have some medicine available at school if he needs any of the "as needed" ones for nauseous or headaches. All part of the "learning something new every day" exercise that we always expect from our kids!

He'll be able to visit friends and have friends come over, but no visits to the mall, theaters, school or any place with a concentration of people. We'll have to ask friends and family to be more vigilant with hand washing and sanitizing when he's visiting them but otherwise there shouldn't be any problems (and obviously he'll need to try to avoid contact with anyone who is sick themselves). We'll also be sure to pick up extra digital thermometers and distribute them to the few houses he visits most, just to help allay any worries about monitoring for fever.

Sawyer has been feeling well today. He went outside for a little bit in the late afternoon with a hospital volunteer (a young man attending RIT) and has had a craving for bread dipped in olive oil and pizza slices from Wegmans.

I watched a movie the other night called "You Again" starring Jamie Lee Curtis, Sigourney Weaver and Betty White (yes, it was a chick-flick) - but early in the movie one of the characters said something that I just had to write down since I think it's so true: " You can't control the things that happen to you but you can control the way you react to them" -- it's how I've been feeling the last few weeks -- reacting proactively and positively to Sawyer's diagnosis has kept my mental state uplifted and intact! And the reaction of our family, friends and community has also been so positive and helpful that it's made a huge difference in life for us as well. Thank you.

Hoping for Monday...

The doctor said this morning that it's looking like they'll send Sawyer home on Monday! They want to give him another chemo treatment (on Saturday) before sending him home. The rest of this week should be fairly boring and uneventful since he's been feeling good since his last treatment, although his blood counts will most likely drop over the next day and he may feel more tired and nauseous (but he's been able to keep it pretty much under control with the meds).

Halloween Parade

The hospital staff line the corridor and the kids that are able to leave their rooms have a chance to go trick-or-treating. The left photo shows just one section of the corridor; the kids actually go down another hallway about the same length and around the corner to the doctors' offices. Sawyer (shown with one of his favorite nurses "Crazy Annie") came back with two large bags of candy and other stuff that was handed out. Now if he can only keep Mom out of it!

Questions for the doctor

I had thought of more questions to ask the doctor when he came on the daily rounds today. I found out that our pets are no problem (animals are fine he said, it's people that's the problem -- as far as germs anyway).

When Sawyer goes out of the house to school, or a restaurant or store, or something like that he won't need to wear a mask. He'd have to be careful about going into someplace like a movie theater though and I don't think they'd let him on an airplane for awhile.

He still has a full head of hair. It will probably be at least another week or more before he starts to lose it.

Once he's released, we'll need to keep an eye on his temperature. If it goes over 100.5 we'll need to call and most likely will be taking him directly back up here to the hospital to be admitted until they can identify the source of the infection.

He will have his bone marrow tested again on Day 28 of his treatment. Results come back in 1-2 days and our hope will be that there's zero leukemia cells in it. So that's our initial target. But we were told that pretty much everyone relapses at some level and the vast number of relapses occur either during the treatment phase or within 2 years after. So our long-term goal is five years out -- they won't pronounce that a patient is cured until at least that long.

On other news, Mark was able to move the wood out of our basement yesterday with what sounded like a very energetic crew. Someone showed up with a wood splitter and a gator tractor which allowed them to tackle some logs that he hadn't had a chance to cut yet. Needless to say we are thrilled and thankful to our friends and family for their continued willingness to step in and help. I keep feeling sorry for the folks who live in large cities and/or far from their families and don't have the large network that we are blessed with.

Sawyer has thankfully felt mostly good since his chemo treatment on Saturday. His stomach has been a bit off but he's learning when to speak up and which medicines are more helpful. He's also found it's a bit better if he doesn't lie completely flat so he props the head of the bed up a little at night to sleep. The doctor and nurses have reiterated that's he's handling the treatments much better than many, and attribute much of that to his overall good health otherwise.Keep your fingers crossed for an early discharge!

Halloween at the hospital

Our Halloween started in the night with some ghosts or goblins in our room, or else the night nurse forgot her ninja costume -- we hadn't had her before and she was noisier than the usual evening nurses. Most of the nurses have some sort of Halloween costume on today (no surprise since they're working on a pediatric floor!). But nothing outrageous or too flamboyant. One of the local party stores donated a whole bunch of costumes to the hospital and the nurses were going room-to-room earlier to let kids pick out something to wear for the parade this afternoon. One of Sawyer's favorite nurses brought him a black and purple wizard hat with lights for him to wear from her own costume collection (she's dressed up as a lady bug). He's planning on sitting out in the hall and watching the younger kids go trick-or-treating around the floor. I'll see if I can get a photo of him to post later....

Day 9

I asked the doctor a little bit more about the need to filter our water at home and he said that we could always just boil any water Sawyer drinks or uses to brush his teeth (no need to worry about the shower). But I think I'll feel better if we put some sort of system at least on our kitchen sink. The doctor said that systems are available at Home Depot and Lowe's and that they're pretty standard, so it shouldn't be a big deal.

Mark had asked the doctor a few days ago about Sawyer's ability to go hiking. It sounds like for about the first year Sawyer shouldn't be more than a few hours from a trailhead (i.e. a car to get him to the hospital if needed) and definitely no overnight backpacking, just day trips. That means a weeklong backpacking trip they had hoped to do over the summer will need to be postponed.

Overall Sawyer is feeling good from his chemo treatment yesterday but still struggles with some stomach issues: some pains, some gas, some discomfort. It's to be expected since the chemo wipes out so many things in the body including cells that typically regenerate quickly and often, like mucus, stomach lining, mouth lining, hair and skin cells. That's why people have stomach problems, lose their hair and get mouth sores. Sawyer's mouth isn't yet sore but the lining is whitish and not nice and pink. The doctor said it will most likely get worse before it gets better - so he can probably expect a few days where it will be painful to eat. If so, they will give him a local anesthetic or morphine to block the pain and give him nutrition through his IV.

We aren't getting any snow in Rochester - the sky is actually pretty clear and blue, but the temps are cool and crisp.

I pre-ordered the latest "Eragon" series book that comes out next week. All three of us enjoy the story (this is the fourth and final installment) and will be happy to listen to the 22 CDs in the audiobook to help pass the time.

Neutropenia

Here's your vocabulary word for the day -- neutropenia. It's the medical term for having a low white blood cell count. If someone is neutropenic his/her immune system is compromised and at risk for an infection. The way doctors know is to do a blood test and create an ANC count (absolute neutrophil count). Our bodies' first line of defense against infections and bacteria are neutrophils. If the ANC count drops below 500 someone is considered severely neutropenic and he/she is at risk of infection just from bacteria that normally lives in the body. Fever is the signal the body gives off if its fighting an infection, so Sawyer will have to be alert to his body temperature. The best precaution is prevention - good handwashing by everyone!
Neutropenia is generally treated with antibiotics and the sooner they're started the better. Sawyer's counts will be checked at least weekly by a nurse who will come to our house (or at school) to draw blood to be tested, but it will be something we'll be very aware of on a daily basis. I've realized that anytime we travel we'll need to make sure we take a digital thermometer as well as know where the closest hospital is.

Quiet day

It's been a quiet day so far. One of Sawyer's best friends came for a visit and they're all set up with a tv and gaming system.  Mark and I walked over to the University of Rochester with one of our friends to attend a pre-football game tailgate party sponsored by an Alfred University alumnus (AU is playing U of R today). We were able to chat with a few folks from home as well as meet new AU alumni.

Sawyer received two different chemo drugs around lunchtime and we expect that he'll feel a bit tired and nauseous later. Mark is going to go home this afternoon and come back on Monday. Sawyer and I will probably hunker down and read and/or watch movies tonight and just take it easy. Sawyer's attitude and approach to all of this remains positive.

Improved hospital room

Still not home but the space is much more comfortable with a little re-arranging and some touches from home.

The complex at Strong Hospital

I finally had to look at the Strong Hospital complex on Google Earth to see it from above -- this place is huge and has so many connecting buildings. It has a post office and bank and I swear more people are inside on any given day than live in the entire town of Alfred. It would be interesting to know how many miles of hallway there are here. I did see a walking map posted on one of the walls but didn't stop to check it out. What I do want to get to at some point is the medical library on the first floor, just to see it since I've often heard references to the Miner Library. Sawyer's had a good day - the lumbar puncture went well, they changed the needles and dressing on his port site and now he's able to move his right arm more freely (the port was installed on his upper right chest). He feels good and looks good.

Continued updates

Today's update is brought to you by Mark. I went home last night and am at work today. I'll head back to the hospital this afternoon (hopefully the snow will be all gone by then). Mark sent me an email this morning and here's the latest: "Dr. Mullen and the gang just arrived with a little more good news. When they looked at Sawyer's chromosomes, they found that he had some extra chromosomes which is called hyperdiploidy, and is a good thing. Dr. Mullen stated that folks with these chromosomal markers usually respond better to treatment. He also noted that they are still going to hit Sawyer hard with the chemo. It also sounded like Dr. Mullen plans on doing the lumbar puncture (LP). Following that procedure, Sawyer will need to lie flat on his back for one hour for the chemo to do its work. Our nurse today is Emily and she came up with brilliant idea to change the needles in Sawyer's port while he knocked out with the LP. Finally, Sawyer woke up today with stomach cramps. This could be due the Wendy's spicy chicken wrap AND Subway sub he had for dinner, or his meds, or a little nervousness due to the pending procedure. That is the update for now. Wanted to give you something for the blog and always happy to share positive news." The lumbar puncture is the same procedure he had last week where they give him a shot of chemo in the spinal fluid (he'll have another one in a couple weeks).He can't eat or drink after 5 am until after it's done. He gets knocked out for it and there's not really any residual pain. They were planning on changing the IV needles in his port today so let's hope they'll just do it while he's out as Mark noted above. It's not a painful procedure but they might as well do it then. His port should be much more comfortable since the original needles were much longer than they needed to be and they'll be able to put in shorter ones. Plus it's been a week since he had the port put in so the site should be mostly healed. He had two incisions and the upper one was just to help them place the tubing between his vein and his port. The bandage for that should come off today as well which will be nice. He can feel the tubing since it runs over his collar bone -- something he'll get used to with time.

Halloween

It was a bit humorous this afternoon to listen to Sawyer reading aloud Edgar Allan Poe's poem "The Raven" while receiving a blood transfusion -- good thing it's Halloween time since it fit right in with the holiday theme!

T-shirts

One of Sawyer's best friends has designed a t-shirt and said it was okay for me to offer anyone who's interested the opportunity to purchase one. I thought I could attach the PDF file that shows the design but I
guess not.

The shirts are gray with orange lettering: the front will have a large orange ribbon with Sawyer's initials and the back has a quote from Ralph Waldo Emerson: "We acquire the strength we have overcome"

they are $12 and are adult unisex sizing: S,M,L, XL, XXL (XXL is $14) - many thanks to the Kampus Kave in Alfred for offering a great deal as their donation to the Stacks for Sawyer fundraiser

Orders are due by Nov. 1 and the shirts will come in about 2 weeks.

Out of town orders can be emailed to Kathy Woughter at woughter@alfred.edu; then put a check in the mail made out to "Stacks for Sawyer". Please include an extra $5 per order for shipping if you want it sent to you. Or they can come to me and you can get it from me at your convenience.

Mail checks to Kathy Woughter, 6294 Terbury Rd, Almond, NY

(T-shirt profits benefit the Stacks for Sawyer fundraiser)

Fundraisers

I've had a few people ask me if they could buy tickets at the door to the Nov. 6th fundraiser (Stacks for Sawyer) and I found out that yes you can. Tickets are both pre-sale and at the door. If someone doesn't want to eat the brunch they can still go in for the raffle and silent auction.

We've also learned that a friend has ordered bracelets imprinted with "Sawyer's Soldiers" that will be sold and t-shirts are being designed for sale as well. Very impressed, again.

And, the chorale director at Alfred University is going to dedicate the December concert and call it "Songs for Sawyer" - she's been a longtime friend and we think this is very special as well. To make it even more so, the singers will be joined by the Susquehanna String Band, a folk band that Mark and I both love (introduced to us by the same friend). One of the band members is a cancer survivor himself. She plans on doing a free will offering at the concert as well.

I admit it's certainly weird to be "advertising" events like these - you never expect they'll be something you need for your family, just always things you happily support for others in need. And as much as we have terrific insurance and great jobs, we are realizing that random expenses will add up over the next three years (like just this morning Mark asked about our water at home and the doctor said we'll probably need to install a filtration system of some kind). As with most people, it's pretty awkward to know that these are benefitting us and we're pretty modest about it all. But in the end, wow, we know it will make a difference.

Talkin' bout transfusion

Sawyer is feeling good today - had a hearty breakfast and is pretty perky. Spending time reading this morning and will work with the tutor this afternoon.

Every night they take a blood sample to test his "count" - the white blood cells, the red blood cells and platelets. The nurse this morning showed us the daily report that they run on the blood and explained the various terms and measurements. He was borderline on one of his levels and he will be receiving a blood transfusion shortly. This is very normal and totally expected. The chemo drugs are doing their job in knocking things out (the good cells have to go with the bad since the drugs can't tell the difference). The transfusion will just help his body build some of the red blood cells back up (it's not whole blood that's given, just the reds). It's done in the room through his chest IV and isn't any different from how he's received other medicines; it will just take a little longer (2-3 hours) since they infuse the blood fairly slowly. They warm it so that he doesn't get a stream of cold liquid going in!
So for everyone who supports the American Cancer Society by giving blood, you have helped patients like Sawyer! Keep up the good work.

"They tell me I'm perfectly healthy..."

".. except for the cancer." I laughed when I heard Sawyer tell this to one of his classmates visiting this afternoon (she was a lively ball of energy intent on catching him up with all the school news). She brought a great card made by some of the students and signed by many more. Many of their get well wishes brought smiles and laughs to us all, as are the humorous get-well cards coming in the mail.

He spent some time with the tutor this afternoon. He got to load up his laptop and material and walk out of the unit down to her office. He needs to wear a mask anytime he's out of the room but was able to take it off once he got there. More of his homework was delivered tonight from the school by a friend of ours who picked it up. She also brought along a signed and framed photo from his soccer team.

We'll be interested to see what Halloween brings to the hospital. There aren't too many decorations up but I imagine we'll see some nurses in costume, plus someone said there's a big parade where the kids can "trick-or-treat" at the offices on this floor. I hope they come by our room since we have enough candy to hand out to everyone! I fully expect to gain a few pounds just sampling it! Luckily we got some fresh fruit today to offset that.

The hospital offers a variety of organized activities to keep kids busy: the typical crafts and bingo but music and pet therapy as well. Sawyer was offered the chance to learn to play the guitar with the music therapist but wasn't interested. We haven't seen the pet therapist yet but that would be a great visit.

We had another day of visits by a variety of friends who came with a variety of gifts -- thank you for helping to break up the day. One visitor was a librarian for one of our local public libraries who really helped define the notion of deliveries for the "homebound." She brought Sawyer some newly released movies that he's been wanting to see.

According to his "chemo roadmap" he shouldn't be getting any more chemo drugs through his IV port until Saturday. Which gives his immune system a couple more days to rebuild. He'll have another spinal tap (lumbar puncture) on Friday where they'll inject some chemo into his spinal fluid as a precaution. Apparently until the late 1980s doctors didn't realize that leukemia cells could live in the spinal fluid. They would get rid of the cells elsewhere and think the person was all set only to have it come back because the cells were hiding. But now they know and give treatments in the spine as well. Sawyer didn't have any leukemia cells in his spinal fluid but they're treating it anyway. The only downside to the procedure is that he can't eat or drink anything for many hours beforehand (since they knock him out for it) so it will be a day of feeling hungry and thirsty for awhile. We don't know yet what time it's scheduled for.

More good news

The doctor said they are stopping the antibiotics and the fluids that Sawyer has been receiving through the IV line - that means he can be untethered from the IV pole and have a bit more freedom of movement.

He will have to continue to drink fluids though to make up for not getting them automatically. But he says he's up for it to keep from being hooked up! He's feeling the best yet today - more energy and his stomach feels good. And, he got to sleep in until 9:30 since the doctor and his team made later rounds. Bet many of Sawyer's friends could say they slept in that late today!

I'm heading out for a long walk and hoping the rain isn't waiting to ambush me as soon as I walk out the door (or wait until I'm the farthest away to drench me)! But I haven't taken a shower yet and need to get wet at some point....

Random thoughts

Mark and I just stopped up to see the Ronald McDonald House located in the hospital - what a great gift for parents. I can't imagine having my child in the ICU to begin with but knowing that parents have a place like that made me choke up. There are all sorts of snacks, drinks and random meals available as well as a living room, computer room, laundry facilities and guest rooms. We have a day pass and can stop up between 9 am - 9 pm each day as we want.

Mail was delivered today and what a handful showed up! Sawyer read through them all and appreciated everyone's comments. Thanks!

Sawyer is much more perky today and has actually been eating.  He took a shower this morning and changed his clothes. They unhook his IV and cover it with plastic so that the port site doesn't get wet (it's still bandaged until Friday). Once he's out, they re-hook the IV back up.

He's free to get up and walk around as he wants as well but has started reading a book that one of his friends brought over the weekend and seems pretty engrossed in that.

Happy News!

The nurse practitioner said that Sawyer will likely be discharged much earlier than we thought! Hopefully around Nov. 10th (but we'll need to double check that with the doctor who I'm sure will be much more cautious with his answer). Once he's home, he'll be able to return to school as long as he feels up to it. We will come back on Mondays every week for additional follow up, plus Mark and I will be trained how to administer some of the chemo drugs at home (both orally and through his IV). A nurse will come to the house (or school) 1-2 times a week as well to take blood so they can monitor his levels.

After about 5 months of weekly visits, things will start to taper off so that we come up once a  month.

Day Four

This is considered Day Four of his in-hospital treatment. He will get another shot of chemotherapy (a different drug he hasn't had yet) about 11 am. He will be getting a total of five different drugs through the IV port in his chest (kind of sounds like he joined up with the Borg from Star Trek!).

The doctor does his rounds first thing in the morning. He stopped by about 7:45 this morning with his group of white coat followers (they don't generally say anything, just stand and watch). Sawyer is big fan of the tv show "Scrubs" and we often think of that show when they arrive each day.

Sawyer's appetite was a little better by the end of the day yesterday. He hasn't felt sick to his stomach, just generally doesn't feel like eating. The doctor said that's normal, but in a couple days he should be having a "ravenous" appetite due to one of his medicines.

Mark says the nurses here are really ninjas since they sneak in and out at night and neither one of us hear them. Unfortunately, Sawyer knows every time one of them comes in (2-3 times a night) since they have to wake him up to take pills or to record his temperature and blood pressure.

Just a reminder that visitors are welcome but only if everyone is feeling well. If you have a cold or don't feel good, you'll need to wait to come. The chemo is knocking out the leukemia cells but it takes all his good immunity cells at the same time. His immune system will be pretty wiped out and won't be able to fight off normal bacteria, etc. that normally they would.

School

The hospital social worker thought the tutor might start coming today. She said she was amazed at the staff at Sawyer's school (go Alfred-Almond!) - they, and Amy Decker in particular, have been so helpful and proactive. The social worker said too often she struggles with the schools to get things in place.

Sawyer should be able to return to school shortly after being discharged from the hospital - so he should only be out for 5-6 weeks. He's looking forward to being part of the wrestling team when he returns. He won't be able to actually wrestle (no contact sports for awhile) but he will be able to lift weights and workout with the team. He was very happy to hear that since he's built up some impressive muscles and definition over the last year or so and will be determined to get it back.

Statistics

We are utterly amazed to look at the stats for this blog - it's only been up 3 days and there have been over 3800 hits!

Plus, the fundraiser for Sawyer sounds like it's taking on a life of its own - it was in place within 48 hours of his being diagnosed and I heard today that donations for the auction are pouring in! I'll need a box of kleenex with me when I walk into that room on the 6th. You guys are so great, it's going to take a lifetime to repay everyone but we're up for it! I'll start by sending out a bazillion thank you cards and flooding the post office with little white envelopes....