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.
Wednesday, November 30, 2011
Tuesday, November 29, 2011
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.
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.
Wednesday, November 23, 2011
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).
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
Tuesday, November 22, 2011
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.)
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.)
Monday, November 21, 2011
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.'
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.'
Sunday, November 20, 2011
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.
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.
Friday, November 18, 2011
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.
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.
Thursday, November 17, 2011
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.
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.
Monday, November 14, 2011
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.
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.
Friday, November 11, 2011
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.
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.
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.
Wednesday, November 9, 2011
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.
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.
Monday, November 7, 2011
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.
Sunday, November 6, 2011
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.
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.
Saturday, November 5, 2011
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.
"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.
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.
Friday, November 4, 2011
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).
"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.
Thursday, November 3, 2011
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.
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.
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.
Wednesday, November 2, 2011
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.
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!).
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!).
Tuesday, November 1, 2011
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.
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).
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