Monday, October 31, 2011
Halloween Parade
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!
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....
Sunday, October 30, 2011
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.
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.
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.
Saturday, October 29, 2011
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.
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.
Friday, October 28, 2011
Improved hospital room
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.
Thursday, October 27, 2011
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)
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.
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.
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.
Wednesday, October 26, 2011
"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.
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....
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....
Tuesday, October 25, 2011
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.
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.
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.
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.
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.
Monday, October 24, 2011
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....
Monday update
We've met a couple times with the hospital social worker and she thinks that the school tutor may start tomorrow (some things you just can't escape from no matter where you are!). Sawyer's school has already sent up a laptop for him to use with the needed software programs. And there is some thought to maybe trying to Skype him into a class or two at school. It may not happen but it's an interesting idea. If nothing else, Skpe on his new iPad will allow him to stay better connected with his friends.
Sawyer's iPad arrived today! We are very grateful to our work colleagues for being so generous with that gift. And they chose an orange cover for it (orange is the official color for leukemia).
Sawyer is feeling better today. The doctors are working with him to figure out what medicine(s) work best for his not feeling like eating. The one that seems to be helpful right now has the side effect of making him sleepy; but at least he's eating! Today was the second day without any chemo treatment, but he'll have one tomorrow.
He's able to wear his own clothes and not be stuck in hospital garb, and he's free to get up and walk about as he wants. He can leave the room too, as long as he wears a mask.
Mark and I got set up with a day pass to the Ronald McDonald House that's in the hospital (there's a larger one a few blocks away). We need to go up for an orientation at some point. We've been told that we can get meals, showers, and laundry there.We don't anticipate asking for a room since we can both stay in the room with Sawyer fairly comfortably and we have many offers of rooms with people who live in Rochester. We'll let others who aren't as fortunate as us use the space.
My mom is taking care of our house and keeping Nana, our dog, and Dove, the cat, company. She enjoys the quiet house and the ability to spread out with her sewing projects.My aunt and uncle also live next door to us and are terrific about making sure things are taken care of.
November 8th is a target date for Sawyer -- the new Call of Duty game comes out and the last Eragon book is released (he's been waiting what seems like 3 years for that to come out!). We have the other ones of the series on CD but will probably download it to his new iPad. It will be a competition between playing the new game vs. listening to the book!
Sawyer's iPad arrived today! We are very grateful to our work colleagues for being so generous with that gift. And they chose an orange cover for it (orange is the official color for leukemia).
Sawyer is feeling better today. The doctors are working with him to figure out what medicine(s) work best for his not feeling like eating. The one that seems to be helpful right now has the side effect of making him sleepy; but at least he's eating! Today was the second day without any chemo treatment, but he'll have one tomorrow.
He's able to wear his own clothes and not be stuck in hospital garb, and he's free to get up and walk about as he wants. He can leave the room too, as long as he wears a mask.
Mark and I got set up with a day pass to the Ronald McDonald House that's in the hospital (there's a larger one a few blocks away). We need to go up for an orientation at some point. We've been told that we can get meals, showers, and laundry there.We don't anticipate asking for a room since we can both stay in the room with Sawyer fairly comfortably and we have many offers of rooms with people who live in Rochester. We'll let others who aren't as fortunate as us use the space.
My mom is taking care of our house and keeping Nana, our dog, and Dove, the cat, company. She enjoys the quiet house and the ability to spread out with her sewing projects.My aunt and uncle also live next door to us and are terrific about making sure things are taken care of.
November 8th is a target date for Sawyer -- the new Call of Duty game comes out and the last Eragon book is released (he's been waiting what seems like 3 years for that to come out!). We have the other ones of the series on CD but will probably download it to his new iPad. It will be a competition between playing the new game vs. listening to the book!
Sunday, October 23, 2011
Quiet day
Today should be fairly quiet. No chemo drugs today. If he wants, Sawyer will be able to get unhooked from the IV line for 30-45 minutes and go outside for some fresh air. We've got some visitors coming shortly so that will be a good distraction for a couple hours.
Saturday, October 22, 2011
Afternoon visits
We also have some new reading material, home-baked cookies, candy and a few gift cards.
Sawyer is still a little sore from the procedure yesterday but not enough to take pain medication. He hasn't eaten much today but the nurses say that's to be expected. But otherwise things are going smoothly.
Bone marrow donation
Some leukemia patients end up getting bone marrow transplants (not on the horizon at all right now for Sawyer). Many of you have hopefully already heard about the bone marrow registry and I'd encourage you to consider signing up for it. A dear friend of mine is currently going through treatment for breast cancer and on her blog she mentioned the registry. I signed up for it a few months ago - extremely easy and no cost. I was mailed a packet with three cotton swabs and information about the registry. After reading the material, I signed the consent form, swabbed my cheek, sent the swabs back in the postage paid envelope and am now a potential donor for someone.If I can help save a life that way, I'm all for it.
You can read more at the national marrow donor program site, Be The Match: http://www.marrow.org/Home.aspx
You can read more at the national marrow donor program site, Be The Match: http://www.marrow.org/Home.aspx
Background
I've had a few people ask me about Sawyer's initial symptoms and how we ended up where we are:
Sawyer started not feeling good at the beginning of October. Mark had just come down with the typical change of the season head cold and we figured Sawyer had picked it up. He stayed home from school a couple days but then went back and continued to play soccer (although as time went by he didn't really have the energy or feel well enough). He never had any cold symptoms (congestion, cough, sneezing) nor any intestinal problems like diarrhea. He was tired, somewhat nauseous, hungry but not really feeling like eating, and had a low grade fever. He started sleeping more and losing energy, and being cold more than usual.
Mark took him to the doctor for a check up last Friday because he wasn't getting better and I was tired of him not having his stomach feel good. He was losing some weight as well, but he wasn't eating.
His doctor (Andy Call) told us to take him to the hospital to have blood drawn, which happened on Monday. The red flag was that his white blood cell count was extremely low. Dr. Call called us Monday night with those initial results and said he was working to get us an appointment in Rochester.
We came up to Rochester for a Wednesday morning appointment, they did another blood test and his white cell count had dropped even lower. Other blood counts were normal (platelets and red cells). The doctor thought is might be leukemia but the only way to tell for sure was to look at the bone marrow, which they did and further tests told us what type.
We are very grateful to Dr. Call for picking up on enough clues to have a blood test done, and not sending Sawyer home to wait it out. It will make a big difference to Sawyer's recovery to have him being otherwise healthy and catching this early.
Sawyer started not feeling good at the beginning of October. Mark had just come down with the typical change of the season head cold and we figured Sawyer had picked it up. He stayed home from school a couple days but then went back and continued to play soccer (although as time went by he didn't really have the energy or feel well enough). He never had any cold symptoms (congestion, cough, sneezing) nor any intestinal problems like diarrhea. He was tired, somewhat nauseous, hungry but not really feeling like eating, and had a low grade fever. He started sleeping more and losing energy, and being cold more than usual.
Mark took him to the doctor for a check up last Friday because he wasn't getting better and I was tired of him not having his stomach feel good. He was losing some weight as well, but he wasn't eating.
His doctor (Andy Call) told us to take him to the hospital to have blood drawn, which happened on Monday. The red flag was that his white blood cell count was extremely low. Dr. Call called us Monday night with those initial results and said he was working to get us an appointment in Rochester.
We came up to Rochester for a Wednesday morning appointment, they did another blood test and his white cell count had dropped even lower. Other blood counts were normal (platelets and red cells). The doctor thought is might be leukemia but the only way to tell for sure was to look at the bone marrow, which they did and further tests told us what type.
We are very grateful to Dr. Call for picking up on enough clues to have a blood test done, and not sending Sawyer home to wait it out. It will make a big difference to Sawyer's recovery to have him being otherwise healthy and catching this early.
Lunch time update
First dose of chemo done! It was injected through his new chest port -- very straightforward. They do a saline flush to keep the lines clean and from clogging, and each time Sawyer says his mouth tastes like salted broccoli!
We are learning the concept of "hospital time" means that nothing really happens when they tell us. But we really have nothing else to do.
The doctor said her motto is BIG: boring is good -- so her hope for Sawyer as she was leaving was to "have a big day" -- the less excitement the better.
We did talk about a few more interesting things that Sawyer will have to avoid. No fresh flowers in the room because of possible fungus (and other airborne things) and if he wants to eat fruit it will need to be something that can be scrubbed and/or peeled. And since he'll be susceptible to fungal infections (and they would be bad) he can't be around things like hay or mow the lawn. So, his grandpa has lost a summer helper on the farm. We always help my dad do his hay in the summer, and Sawyer has been helping to mow his lawn (as well as ours). We also heat with wood, and Sawyer won't be able to split it. And we store much wood in the basement that we'll have to move out since our forced air furnace will blow fungi and other stuff from the basement into the house. Mark will need to construct a wood shed outside and we'll move the wood, plus be more aware of filters on the furnace and in the house.
Mark and I didn't yet go out for our walk so we're heading out for that now, plus a stop at CVS for a few supplies and Dunkin Donuts for a coffee and maple donut for Sawyer. Another yummy temptation across from the hospital is an Abbott's frozen custard shop (that may be my downfall!)
We are learning the concept of "hospital time" means that nothing really happens when they tell us. But we really have nothing else to do.
The doctor said her motto is BIG: boring is good -- so her hope for Sawyer as she was leaving was to "have a big day" -- the less excitement the better.
We did talk about a few more interesting things that Sawyer will have to avoid. No fresh flowers in the room because of possible fungus (and other airborne things) and if he wants to eat fruit it will need to be something that can be scrubbed and/or peeled. And since he'll be susceptible to fungal infections (and they would be bad) he can't be around things like hay or mow the lawn. So, his grandpa has lost a summer helper on the farm. We always help my dad do his hay in the summer, and Sawyer has been helping to mow his lawn (as well as ours). We also heat with wood, and Sawyer won't be able to split it. And we store much wood in the basement that we'll have to move out since our forced air furnace will blow fungi and other stuff from the basement into the house. Mark will need to construct a wood shed outside and we'll move the wood, plus be more aware of filters on the furnace and in the house.
Mark and I didn't yet go out for our walk so we're heading out for that now, plus a stop at CVS for a few supplies and Dunkin Donuts for a coffee and maple donut for Sawyer. Another yummy temptation across from the hospital is an Abbott's frozen custard shop (that may be my downfall!)
Official Day One
Good morning! We all slept pretty well last night and are ready for the official Day One (of 28 in the hospital) of the chemo treatment, which will be about 10 am. Sawyer will be getting a cocktail of five different drugs for his treatment, not all given at the same time though. We have a chart that shows what he receives on each day (some days nothing) and how long it takes to administer. Since it all comes through the IV it won't really be any different for him because he's hooked to an IV bag constantly.
He will also get prednisone (a steroid) every day in pill form, along with nausea medicine as needed.
His chest is still sore from the port insertion yesterday but it's to be expected. He's not in much pain but did take some medication to help with what he does have.
Overall he seems to be pretty comfortable.
Mark and I will be getting information on the Ronald McDonald house - there's one as part of the hospital that we can get a day pass to, and most likely could stay overnight as well. There's larger house a couple blocks away. But we've received a number of offers from friends for places to stay in Rochester and will probably take folks up on a few of them and save the bed space in the RM House for parents who really live far away or have no other options. Not many parents are going to have the private double room that we do.
We have also been told that our parking garage expenses will be covered by an organization called CURE (how wonderful!). We'll have to get a long term pass at some point. The social worker is gathering material for us, as well as working with Alfred-Almond school to make sure we're all squared away on available services.
Sawyer is looking forward to having some of his buddies come for a visit today. They're going to have to help us eat up a yummy cake and huge bag of (chocolate) Halloween candy that has made its way here already. (I've been good - only one piece of chocolate, so far, but I expect that to not be the case for very long!).
Mark and I are going to head out for a walk (he's already been out and about and back in before I ever woke up, very typical for him. He'll know this neighborhood in-and-out and be ready to give guided tours before long)
He will also get prednisone (a steroid) every day in pill form, along with nausea medicine as needed.
His chest is still sore from the port insertion yesterday but it's to be expected. He's not in much pain but did take some medication to help with what he does have.
Overall he seems to be pretty comfortable.
Mark and I will be getting information on the Ronald McDonald house - there's one as part of the hospital that we can get a day pass to, and most likely could stay overnight as well. There's larger house a couple blocks away. But we've received a number of offers from friends for places to stay in Rochester and will probably take folks up on a few of them and save the bed space in the RM House for parents who really live far away or have no other options. Not many parents are going to have the private double room that we do.
We have also been told that our parking garage expenses will be covered by an organization called CURE (how wonderful!). We'll have to get a long term pass at some point. The social worker is gathering material for us, as well as working with Alfred-Almond school to make sure we're all squared away on available services.
Sawyer is looking forward to having some of his buddies come for a visit today. They're going to have to help us eat up a yummy cake and huge bag of (chocolate) Halloween candy that has made its way here already. (I've been good - only one piece of chocolate, so far, but I expect that to not be the case for very long!).
Mark and I are going to head out for a walk (he's already been out and about and back in before I ever woke up, very typical for him. He'll know this neighborhood in-and-out and be ready to give guided tours before long)
Friday, October 21, 2011
Inspiration
We had a very inspiring visitor today (unfortunately Sawyer wasn't back in the room yet to talk with him) - Jason Latham, from Alfred-Almond, and his mom stopped by after Jason was done with his appointment at Strong. He was diagnosed and treated for a very scary brain tumor last November and is continuing to receive treatments. He has the same port in his chest that Sawyer just received and was very positive about his experience with it.(Jason is in 8th grade)
Mark and I were delighted to see him and were buoyed by his positive attitude. Cancer does unfortunately strike people of all ages, races, genders, etc. -- we will certainly be meeting so many more examples of families who have overcome the journey we are just starting.We want to throw out a shout of support for all the other families who have to deal with it and pray that they have the same caring support that we are experiencing.
Mark and I were delighted to see him and were buoyed by his positive attitude. Cancer does unfortunately strike people of all ages, races, genders, etc. -- we will certainly be meeting so many more examples of families who have overcome the journey we are just starting.We want to throw out a shout of support for all the other families who have to deal with it and pray that they have the same caring support that we are experiencing.
Fundraiser in place (wow....)
I'm a bit self-conscious about posting this but do it because I'll get in trouble if I don't :)
Do we have amazing friends and family or what?
At Alfred University: Knight Club in Powell Campus Center
Sunday, November 6, 2011 10:00 a.m. - 2:00 p.m.
Tickets for sale beginning Sunday, October 23, 2011 at The Collegiate, Alfred University Barnes & Noble Bookstore and the Almond Public Library (as well as people within the community)
$6 per person
... Come join in a celebration of Sawyer McFadden at an All-You-Can-Eat Pancake Brunch.
Chinese Auction and Large Item Raffles.
A designated bank account is being set up for donations if you are not able to attend. As soon as that information is in place we will update it on here.
Sawyer McFadden was diagnosed with Leukemia on October 19, 2011. He is facing a three year treatment plan at Strong Hospital in Rochester, NY.
This fundraiser will assist the McFadden family with uncovered medical costs, travel expenses, hotel stays and much, much more.
Contact information regarding "Stacks for Sawyer"
Project Manager: Nancy Williams (williams@alfred.edu - 607-871-2164)
Publicity: Deb Clark (clarkd@alfred.edu - 607-871-2040)
Donations for Auction/Raffle:
Tammy Kokot (tmkcandles@aol.com - 607-382-8370)
or Marcy Bradley (bradlemk@alfred.edu - 607-871-2350)
Items can be dropped at either The Almond Library with Tammy or at the Alfred University Barnes & Noble Bookstore with Marcy
Tickets: Bob Woughter
Finance: Kathy Woughter
Volunteers: We are securing that person soon and will update that as soon as it becomes available.
Cards can be sent to Sawyer McFadden at:
Sawyer McFadden (patient)
Strong Memorial Hospital
601 Elmwood Ave.
Rochester, NY 14642
They recommend that you do not use a room number because patients get moved around but if you put "Patient" on the envelope, they will look up the information at the hospital and deliver it to the correct room.
Do we have amazing friends and family or what?
At Alfred University: Knight Club in Powell Campus Center
Sunday, November 6, 2011 10:00 a.m. - 2:00 p.m.
Tickets for sale beginning Sunday, October 23, 2011 at The Collegiate, Alfred University Barnes & Noble Bookstore and the Almond Public Library (as well as people within the community)
$6 per person
... Come join in a celebration of Sawyer McFadden at an All-You-Can-Eat Pancake Brunch.
Chinese Auction and Large Item Raffles.
A designated bank account is being set up for donations if you are not able to attend. As soon as that information is in place we will update it on here.
Sawyer McFadden was diagnosed with Leukemia on October 19, 2011. He is facing a three year treatment plan at Strong Hospital in Rochester, NY.
This fundraiser will assist the McFadden family with uncovered medical costs, travel expenses, hotel stays and much, much more.
Contact information regarding "Stacks for Sawyer"
Project Manager: Nancy Williams (williams@alfred.edu - 607-871-2164)
Publicity: Deb Clark (clarkd@alfred.edu - 607-871-2040)
Donations for Auction/Raffle:
Tammy Kokot (tmkcandles@aol.com - 607-382-8370)
or Marcy Bradley (bradlemk@alfred.edu - 607-871-2350)
Items can be dropped at either The Almond Library with Tammy or at the Alfred University Barnes & Noble Bookstore with Marcy
Tickets: Bob Woughter
Finance: Kathy Woughter
Volunteers: We are securing that person soon and will update that as soon as it becomes available.
Cards can be sent to Sawyer McFadden at:
Sawyer McFadden (patient)
Strong Memorial Hospital
601 Elmwood Ave.
Rochester, NY 14642
They recommend that you do not use a room number because patients get moved around but if you put "Patient" on the envelope, they will look up the information at the hospital and deliver it to the correct room.
Back in the room!
Sawyer went "downstairs" at 11:30 am, we sat with him for about an hour and a half before everything was in place for him to be taken away (and he hadn't eaten or drank anything since 8 pm last night). He just got back to the room at 6 pm. Luckily for him he thought he was only gone for about half an hour!
While in the netherworld of anesthesia, they did a couple xrays, a spinal tap to collect samples to see if leukemia is in the spine and nervous system (it's not, yay!), a heart ultrasoung, and EKG, and to have a port installed in his chest for future administering of drugs and taking blood (he's very happy that it will pretty much eliminate being stabbed by needles). The port is actually under his skin and won't be obvious after he leaves the hospital unless he's receiving a treatment.
We just met with the doctor to go over his chemotherapy "road map" for the next month. She gave us a chart that shows what drugs he will receive and on what days. He'll get those through the IV port in his chest, plus get a dose of steroids every day in pill form.Those pills apparently have a possible side affect of making him moody, which will be very strange for us since he's generally not!
His next 28 days should be pretty anti-climatic. He shouldn't have many side effects, should generally feel decent. After the 28 days he'll go home (yay - let the count down begin!). Then he'll come back up once a week for chemo treatments.
The goal and typical case is that he should go into remission at the end of the 28 days, then for the next 3 years receive maintenance chemotherapy to keep him in remission.
His hair loss will probably happen gradually starting in a couple weeks. It will grow back in about 8 months after he's received the bulk of his treatments. He will keep his eyebrows and lashes. The nurse is already trying to convince him to do something crazy with his hair while he still has it (mohawk, dye it pink, crazy cut) but given his normal conservatism I'll be (pleasantly) surprised if he does anything!
Tomorrow will be DAY ONE of his treatment, which luckily happens right in the room. The nurses on this floor are all chemo-certified so they administer the drugs.
He will be able to get outside for fresh air as well - what a relief, I can't imagine not being able to do that every day.
And we signed consent forms for samples of his blood and bone marrow to be given out to research facilities for use as they work on various treatments and ways to better understand the disease.
While in the netherworld of anesthesia, they did a couple xrays, a spinal tap to collect samples to see if leukemia is in the spine and nervous system (it's not, yay!), a heart ultrasoung, and EKG, and to have a port installed in his chest for future administering of drugs and taking blood (he's very happy that it will pretty much eliminate being stabbed by needles). The port is actually under his skin and won't be obvious after he leaves the hospital unless he's receiving a treatment.
We just met with the doctor to go over his chemotherapy "road map" for the next month. She gave us a chart that shows what drugs he will receive and on what days. He'll get those through the IV port in his chest, plus get a dose of steroids every day in pill form.Those pills apparently have a possible side affect of making him moody, which will be very strange for us since he's generally not!
His next 28 days should be pretty anti-climatic. He shouldn't have many side effects, should generally feel decent. After the 28 days he'll go home (yay - let the count down begin!). Then he'll come back up once a week for chemo treatments.
The goal and typical case is that he should go into remission at the end of the 28 days, then for the next 3 years receive maintenance chemotherapy to keep him in remission.
His hair loss will probably happen gradually starting in a couple weeks. It will grow back in about 8 months after he's received the bulk of his treatments. He will keep his eyebrows and lashes. The nurse is already trying to convince him to do something crazy with his hair while he still has it (mohawk, dye it pink, crazy cut) but given his normal conservatism I'll be (pleasantly) surprised if he does anything!
Tomorrow will be DAY ONE of his treatment, which luckily happens right in the room. The nurses on this floor are all chemo-certified so they administer the drugs.
He will be able to get outside for fresh air as well - what a relief, I can't imagine not being able to do that every day.
And we signed consent forms for samples of his blood and bone marrow to be given out to research facilities for use as they work on various treatments and ways to better understand the disease.
How to find us
If you want to come for a visit:
Come into the main lobby from the parking garage and walk past the information desk and the coffee shop.
Go straight down the hall and turn right -- follow the red markers -- you want to get on the Red Elevators.
Get off on the 4th floor.
Just off the elevators you'll see to the right a sign for 4.1400 Adolescents Ward - push the button to have the doors open.
Walk straight to the nurses station -- we are currently in the first room on the left.Room 1415 (but there's a chance they'll move us at some point)
Feel free to call my or Mark's cell if you want us to meet you in the lobby.
Laurie cell: 607-382-7276
Mark cell: 607-382-7277
Come into the main lobby from the parking garage and walk past the information desk and the coffee shop.
Go straight down the hall and turn right -- follow the red markers -- you want to get on the Red Elevators.
Get off on the 4th floor.
Just off the elevators you'll see to the right a sign for 4.1400 Adolescents Ward - push the button to have the doors open.
Walk straight to the nurses station -- we are currently in the first room on the left.Room 1415 (but there's a chance they'll move us at some point)
Feel free to call my or Mark's cell if you want us to meet you in the lobby.
Laurie cell: 607-382-7276
Mark cell: 607-382-7277
Just waiting
Last night was fairly quiet after we got settled into the room. Sawyer slept mostly okay except he said he was worried he'd pull the IV out of his arm while he was sleeping so he was pretty conscious of that all night. I slept okay but since I'm not good with noise while I sleep it's hard for me to sleep deeply with things like voices, room heater fan, beeping IV feed, etc.
Mark will be back shortly with a few things from home. My mom is going to stay at our house this weekend (she was already planning on it since we were all supposed to be on our way to the Adirondacks today - but we already have reservations to go after Christmas so we won't be away too long!).
We're waiting for them to take Sawyer to surgery to be knocked out again for a spinal tap and placement of a "disc" in his upper chest that will be the entry for his meds and for blood draws. He'll have it in for about 3 years (length of the treatment). He will get his first chemo dose at the same time they do the spinal tap - just an initial shot to get some meds into his system. The spinal tap is to check to see if the leukemia is in the nervous system or not - it will help them decide which treatment to do.
The one downside to today is that Sawyer hasn't had any food or liquid since about 8 pm last night - and we don't know when he'll go for the surgery - they'll fit him in the schedule as soon as possible.
We have had 3 offers for small refrigerators (thank you!) so we should be set. The nurses say we can make this place as much like home as possible - posters, photos, lights, comforters, etc, etc - which is wonderful.We'll be making lists of small things to pick up locally and a few things to bring from home. I told the nurse this morning that when we leave we'll probably feel like we're moving out of a residence hall and wonder how we accumulated so much stuff in such a small space (actually we have quite a bit of elbow room since it's a double room).
The small kitchen on the ward is stocked with juices, snacks and even ice cream! And a Keurig machine so we'll be able to make our own coffee without spending a fortune at the coffee shop in the lobby (but I've been told I have to try out the chocolate chip cookies from there from an expert!)
He does have a window to look out but unfortunately the view is a brick wall and a couple windows.
Wonderful colleagues and friends at Alfred University have already purchased an iPad for Sawyer!
Continued thank yous to everyone for your emails and best wishes.We'll make it through with flying colors thanks to all your love and support!
Mark will be back shortly with a few things from home. My mom is going to stay at our house this weekend (she was already planning on it since we were all supposed to be on our way to the Adirondacks today - but we already have reservations to go after Christmas so we won't be away too long!).
We're waiting for them to take Sawyer to surgery to be knocked out again for a spinal tap and placement of a "disc" in his upper chest that will be the entry for his meds and for blood draws. He'll have it in for about 3 years (length of the treatment). He will get his first chemo dose at the same time they do the spinal tap - just an initial shot to get some meds into his system. The spinal tap is to check to see if the leukemia is in the nervous system or not - it will help them decide which treatment to do.
The one downside to today is that Sawyer hasn't had any food or liquid since about 8 pm last night - and we don't know when he'll go for the surgery - they'll fit him in the schedule as soon as possible.
We have had 3 offers for small refrigerators (thank you!) so we should be set. The nurses say we can make this place as much like home as possible - posters, photos, lights, comforters, etc, etc - which is wonderful.We'll be making lists of small things to pick up locally and a few things to bring from home. I told the nurse this morning that when we leave we'll probably feel like we're moving out of a residence hall and wonder how we accumulated so much stuff in such a small space (actually we have quite a bit of elbow room since it's a double room).
The small kitchen on the ward is stocked with juices, snacks and even ice cream! And a Keurig machine so we'll be able to make our own coffee without spending a fortune at the coffee shop in the lobby (but I've been told I have to try out the chocolate chip cookies from there from an expert!)
He does have a window to look out but unfortunately the view is a brick wall and a couple windows.
Wonderful colleagues and friends at Alfred University have already purchased an iPad for Sawyer!
Continued thank yous to everyone for your emails and best wishes.We'll make it through with flying colors thanks to all your love and support!
Thursday, October 20, 2011
Settled in our new home away from home
We are now hanging out on the fourth floor of the children's wing in their adolescent ward (room 1415). Sawyer has access to a Rec room, an outdoor court area, stocked kitchen area, room service, private bath and shower. One of his nurses has had the exact same type of leukemia and was treated in the same place with the same doctors and will be an excellent role model for him. She is the picture of perfect health.
This room is a double so I'll have an actual bed to sleep in for now. They plan on keeping him alone in the double room for as long as possible, then move him to a private single room if needed. They want him to always be the only one in the room to lower the possibility of outside germs since his immune system is going to be knocked out.
Mark has gone home for the night to pick up some stuff for us and will return in the morning. Then he and I can fight for the bed! Actually there is a large chair that folds down into a bed that we can use too.
They said Sawyer will probably be here for a month. Not a pleasant thought but the staff are making every effort to make sure we are as comfortable as possible. I imagine we'll become very familiar with the area restaurants and will make many trips to Wegmans for basic supplies. We can store food here as well in their small kitchen and do cooking as well in the microwave. They might even find a small dorm fridge for our room. If not they said we could bring one in if we had one.
Calls, emails and texts are a welcome distraction so don't hesitate if you want to be in touch.
Now it's time to turn on my librarian skills and see what I can discover about ALL b-lymphoblastic acute leukemia. I'll know more medical terms in the next few weeks than I want to!
This room is a double so I'll have an actual bed to sleep in for now. They plan on keeping him alone in the double room for as long as possible, then move him to a private single room if needed. They want him to always be the only one in the room to lower the possibility of outside germs since his immune system is going to be knocked out.
Mark has gone home for the night to pick up some stuff for us and will return in the morning. Then he and I can fight for the bed! Actually there is a large chair that folds down into a bed that we can use too.
They said Sawyer will probably be here for a month. Not a pleasant thought but the staff are making every effort to make sure we are as comfortable as possible. I imagine we'll become very familiar with the area restaurants and will make many trips to Wegmans for basic supplies. We can store food here as well in their small kitchen and do cooking as well in the microwave. They might even find a small dorm fridge for our room. If not they said we could bring one in if we had one.
Calls, emails and texts are a welcome distraction so don't hesitate if you want to be in touch.
Now it's time to turn on my librarian skills and see what I can discover about ALL b-lymphoblastic acute leukemia. I'll know more medical terms in the next few weeks than I want to!
More news
Well, we now know for sure that it is acute leukemia. Sawyer will be admitted to Children's Hospital tonight; we're just waiting for them to tell us there's a room available. Once I know his room number I'll let you know.
Test results tonight should tell us what type of leukemia, either ALL or AML. Keep your fingers crossed for ALL - it's easier to treat and has a higher success rate for remission. Either way he'll get chemotherapy, which they expect to start tomorrow. He will probably start to lose his hair in a week or so, but it will grow back after the treatments are over.
If he has ALL, the complete treatment time is about 3 years - with the intensive part happening in the first 6 months. If he as AML, the treatment time is about 6 months total (it's much more intensive).
Tomorrow they will do a spinal tap (and yes, thankfully, he'll be asleep for that) as well as install a "central line" in his chest as a way to administer fluids and drugs without having to keeping poking him. That will be a small surgical process done at the same time he's out for the spinal tap.
The weird thing is that he looks (and mostly feels) healthy. He doesn't have the normal symptoms like bruises, swollen lymph glands and other such maladies.
The treatment for leukemia is standard across all hospitals - they'll do the same thing/approach here that would be done in any other major hospital, which is reassuring. We have full faith in the folks at Strong - they are really exceptional in their approach and handling of everything. They even have staff whose job it is to entertain and distract the patients. Sawyer seems to have connected with that part -- he was playing on a loaned iPad while having things done to him to get ready for the bone marrow test this morning.
Apparently most leukemia patients don't need radiation or bone marrow transplants - chemotherapy generally puts them in remission within a month. Ongoing treatments are meant to help them stay in remission.
I guess we can expect him to be in the hospital at least 3 weeks. We're going to be working with his school to set up tutors and keep him on top of his classwork. Luckily the children's ward has all sorts of games, entertainment systems and even an outdoor court to help him pass the time.
Sawyer is handling the ongoing bad news remarkably well. I think that it's starting to sink in a bit more as time goes on but he's keeping an open mind and staying positive. Mark and I are also doing pretty well. I know that Sawyer appreciates everyone's support and thoughts and messages - he definitely likes to be able to laugh at things people are saying as well as staying in touch with his friends.
Visitors are welcome - the hospital allows visitors every day until 8 pm. Probably not a bad idea to call us before hand if necessary to make sure he's feeling up to it, and early morning visits (before 10) might be best to avoid since that's when the doctors typically make their rounds.
We are very, very appreciative of the outpouring of support we are getting from everyone. You are all amazing! We know that you will be the reason for us getting through this with flying colors!
Test results tonight should tell us what type of leukemia, either ALL or AML. Keep your fingers crossed for ALL - it's easier to treat and has a higher success rate for remission. Either way he'll get chemotherapy, which they expect to start tomorrow. He will probably start to lose his hair in a week or so, but it will grow back after the treatments are over.
If he has ALL, the complete treatment time is about 3 years - with the intensive part happening in the first 6 months. If he as AML, the treatment time is about 6 months total (it's much more intensive).
Tomorrow they will do a spinal tap (and yes, thankfully, he'll be asleep for that) as well as install a "central line" in his chest as a way to administer fluids and drugs without having to keeping poking him. That will be a small surgical process done at the same time he's out for the spinal tap.
The weird thing is that he looks (and mostly feels) healthy. He doesn't have the normal symptoms like bruises, swollen lymph glands and other such maladies.
The treatment for leukemia is standard across all hospitals - they'll do the same thing/approach here that would be done in any other major hospital, which is reassuring. We have full faith in the folks at Strong - they are really exceptional in their approach and handling of everything. They even have staff whose job it is to entertain and distract the patients. Sawyer seems to have connected with that part -- he was playing on a loaned iPad while having things done to him to get ready for the bone marrow test this morning.
Apparently most leukemia patients don't need radiation or bone marrow transplants - chemotherapy generally puts them in remission within a month. Ongoing treatments are meant to help them stay in remission.
I guess we can expect him to be in the hospital at least 3 weeks. We're going to be working with his school to set up tutors and keep him on top of his classwork. Luckily the children's ward has all sorts of games, entertainment systems and even an outdoor court to help him pass the time.
Sawyer is handling the ongoing bad news remarkably well. I think that it's starting to sink in a bit more as time goes on but he's keeping an open mind and staying positive. Mark and I are also doing pretty well. I know that Sawyer appreciates everyone's support and thoughts and messages - he definitely likes to be able to laugh at things people are saying as well as staying in touch with his friends.
Visitors are welcome - the hospital allows visitors every day until 8 pm. Probably not a bad idea to call us before hand if necessary to make sure he's feeling up to it, and early morning visits (before 10) might be best to avoid since that's when the doctors typically make their rounds.
We are very, very appreciative of the outpouring of support we are getting from everyone. You are all amazing! We know that you will be the reason for us getting through this with flying colors!
Bone marrow test
Done with the bone marrow test (all went well, thankfully they knocked him out for it - his hip is sore but he's taken some tylenol).
Now we wait a couple hours to see if it truly is leukemia. If so they will admit him right away. If not, the diagnosis will most likely be aplastic anemia and we'll be able to come home for a few days. Neither one will be a walk in the park and both carry elements of risk, but we'll take it a step at a time.
Now we wait a couple hours to see if it truly is leukemia. If so they will admit him right away. If not, the diagnosis will most likely be aplastic anemia and we'll be able to come home for a few days. Neither one will be a walk in the park and both carry elements of risk, but we'll take it a step at a time.
Quick update
I forgot to mention that we're dealing with Children's Hospital at Strong in Rochester. The staff there have already shown that they are outstanding.
One of our good friends asked about Sawyer using an ipod for music, books and movies - yes, he has an Itouch and I imagine he'll be relying on it quite a bit in the next few weeks to combat boredom (although his friends are doing a good job with text messages!).
One of our good friends asked about Sawyer using an ipod for music, books and movies - yes, he has an Itouch and I imagine he'll be relying on it quite a bit in the next few weeks to combat boredom (although his friends are doing a good job with text messages!).
Wednesday, October 19, 2011
Day One
We decided to create this blog as an easy way to help our family and friends stay updated on Sawyer's progress. We are so blessed to have such an amazing support system - thank you!
We are understandably nervous about the upcoming weeks but keeping a positive attitude certainly helps.
Tomorrow morning Sawyer will have a bone marrow test to see if he truly has leukemia and if so, what kind. If it's not that, it's likely going to be a diagnosis of a disease called aplastic anemia - a slightly better diagnosis but with very similar treatments (chemotherapy). We should have some initial test results by mid-afternoon but not full results until the evening. That will help determine what happens next.
He's been told to expect to be out of school for about a month. Luckily he's in a great school that we know will be willing to work with him to not fall too far behind. And Mark and I are fortunate to have understanding office mates that will keep our work lives under control while we're out for a couple weeks as well (knowing there will be follow-up trips to Rochester for further treatment and testing).
We'll keep everyone updated. Texts, calls and emails are fine, and will probably be a welcome distraction. Visitors will also be welcome at the hospital once we know when they're able to come. Sawyer is strong and otherwise healthy which will help him along the way. But additional support and humor will also be great (and you know chocolate never hurts -- at least not for the Mom!)
We are understandably nervous about the upcoming weeks but keeping a positive attitude certainly helps.
Tomorrow morning Sawyer will have a bone marrow test to see if he truly has leukemia and if so, what kind. If it's not that, it's likely going to be a diagnosis of a disease called aplastic anemia - a slightly better diagnosis but with very similar treatments (chemotherapy). We should have some initial test results by mid-afternoon but not full results until the evening. That will help determine what happens next.
He's been told to expect to be out of school for about a month. Luckily he's in a great school that we know will be willing to work with him to not fall too far behind. And Mark and I are fortunate to have understanding office mates that will keep our work lives under control while we're out for a couple weeks as well (knowing there will be follow-up trips to Rochester for further treatment and testing).
We'll keep everyone updated. Texts, calls and emails are fine, and will probably be a welcome distraction. Visitors will also be welcome at the hospital once we know when they're able to come. Sawyer is strong and otherwise healthy which will help him along the way. But additional support and humor will also be great (and you know chocolate never hurts -- at least not for the Mom!)
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