Tuesday at the hospital

This will be Sawyer's mode of operation for the rest of the week! He was hooked up to saline fluids yesterday mid-afternoon and then started receiving the chemo medicine (big yellow bag) around 9:30 pm. That drug is infusing through his system all day today and will finish later tonight, then he'll just have the fluids to clear the chemo out of his system. They will draw blood every day and release him when the chemo drug concentration is below 0.1 (expected to be on Friday).
He can get up and move around as he wants, he just has to roll the IV pole along with him. He also has no diet restrictions and can eat whatever and whenever he'd like.
He did get a roommate in the afternoon yesterday; another 16-year-old boy who is expected to be in the hospital until Thursday. We were definitely spoiled the last time when we had the whole room to ourselves!

Back on Unit 4.1400

This was an early morning for us - we left the house about 6:45 am and I wasn't happy to see all that snow! But luckily the roads cleared off after about 10 minutes (once we got through Almond) and the sun eventually came around to help me wake up!
Sawyer started in the clinic with an LP procedure (shot of chemo into the spinal fluid), then a quick dose of vincristine followed by the starting of fluids to prep his kidneys for the heavy chemo coming later today. He needs to be on fluids for 6 hours before they start the methotrexate. It will take 24 hours to infuse that medication. He gets another chemo (quicker dose of some kind) tonight and a different drug tomorrow that binds to the methotrexate and helps the body get rid of it out better. He will get continual fluids through his port to flush the medication out which will take 3-5 days. We figure he'll be in the hospital until at least Thursday. This process will be repeated over 4 different weeks from now through mid-March.
We are now settled on the same unit we were in October when this all started (4th floor, off the red elevators), in the room next to the one we had last time (room #17 now). We were hoping he'd have a single room but unfortunately not - he has a double which thankfully doesn't have a second patient as of yet. We'll keep our fingers crossed that the second bed stays empty. But it means we (Mark and I) can't get as comfortable this time - no sitting on or sleeping in the second bed, no using the in-room bathroom or shower (for patients only) and not spreading out quite as much. The upside is that we won't be here as long as last time!
Sawyer has gone off with the hospital tutor already; she'll come every day about 12:30 to work with him. Mornings he will try to connect with some classes at school with his iPad.
I'll be here until Wednesday mid-day, then I'll head home to teach a couple of classes for work. Mark will come up Wednesday late afternoon and stay until Sawyer is discharged.

Clinic visit today

Happily, the clinic visit today was uneventful. We talked with the doctor for a bit, then Sawyer received a quick dose of vincristine (liquid drug, pushed in through a needle in his port) and we were on our way to the Olive Garden for a delicious lunch.

Our conversation with the doctor centered around the "event" of last week as well as what to expect next Monday when we come. The drug that Sawyer reacted to was asparaginase, an important one in his chemo protocol, and he'd had it twice before. But since his reaction last week was so unheard of, the doctor has done, and will do, more research to decide how to approach the next time he's supposed to receive it. The doc will be talking with other physicians around the country who may have had a similar experience and will try to form the best opinion and option he can for Sawyer's treatment. Asparaginase is a drug derived from bacteria and is therefore a foreign protein to the body (and thus why there can be a reaction even if there wasn't one before). There are apparently some other variations of the drug, derived from different bacteria, but still in the same family. There will be some consideration if it will be possible, or even advisable, to use one of those. The doctor obviously would prefer that Sawyer not get near asparaginase ever again.

The nurse that treated Sawyer today was the one that performed CPR on him last week so we were able to express our thanks to her. We had been told she was the perfect one to have been on scene since she's their CPR training expert. Sawyer had a question or two about CPR in general and over the course of his conversation with her figured out why his sternum had been sore over the last week. He hadn't mentioned it to me or else I could have explained the amount of pressure often applied during CPR would result in a sore chest.

Next Monday will start what's called the "interim maintenance" phase which lasts 2 months. He'll start in the clinic and get another LP (spinal tap), get hooked up to some fluids and then move to a room in the hospital. He will be hospitalized every other week for 4-5 days and receive methotrexate each time. There will be 4 different hospitalizations, each one a bit harder on the body. It will take 24 hours to infuse the drug through his port and 3-5 days to flush it out of his system. They will give him plenty of fluids and prep his kidneys for the process since it can be tough on them to have to handle the drug and all the accompanying fluids. The primary side effect is mouth sores (each time he receives the drug the side effects will be more pronounced). Secondary side effect, no surprise, will be some nausea but it's not supposed to be too bad and hopefully mostly controlled with medication. We will work with the school to get the hospital tutor lined up again.

Mark and I will split the time in the hospital with Sawyer. I'll do the first half of the week and Mark will do the second half. We'll all be happy to have visitors so don't be afraid to call or email us if you want to stop by!

One bit of good news is that Sawyer won't have to receive any medications on the weeks in between the hospital stays. We're all looking forward to the beginning of April and getting through this phase, with the hopes that he will be through the most of difficult times. But until all of this is actually over, we'll keep our fingers crossed for no more surprises or unexpected turn of events.

In the meantime, we are being pampered and spoiled at home with some very delicious meals, and since Sawyer's appetite has been good the last week he's also been able to enjoy them!

All is well

Sorry, folks. I thought Mark had made an update to the last posting to let everyone know that all is well. Sawyer and I stayed overnight in Rochester on Friday since he was not feeling well, but his symptoms settled down and we never had to contact the on-call physician again. He slept in on Saturday morning, we ran a couple of errands, had lunch and came back home. He's been feeling good since then.
We return to clinic tomorrow for his regular Monday appointment. He's scheduled to get just one chemo drug, so hopefully it will be a short visit and a decent week to follow.
He's working on catching up on homework to try to be as caught up as possible before the scheduled hospitalization on Jan. 30th. That day could change since it will be "count dependent," meaning his blood counts need to be at a certain level before they'll start the next step of the every other week hospital stays. But, as always, we'll try to keep you in the loop.

Back to Rochester

This week has another wrinkle for us as Sawyer began feeling the chills and running a low grade temperature this evening. He felt better after a shower but his temperature remained consistently above 101 degrees. This was cause for concern due to the explicit instructions to call the hospital if his temperature went over 100.5. After several readings at 101.4 and above, we called the on-call physician who didn't seem too concerned since Sawyer's most recent blood test indicated that his ANC - or immunity - was in the normal range. We were instructed to keep an eye on him and call if he complained about flu like symptoms. While getting ready for bed, the chills and shivers returned. Not wanting to make a midnight run with a winter storm approaching, Laurie decided to take Sawyer to Rochester. They will see how he is feeling and follow up with the on-call physician if needed. We will feel considerably more comfortable knowing that Sawyer will only be a few miles away from Strong if he needs to be admitted. Updates to follow.

Wonderfully boring

Sawyer has been home for almost twenty-four hours and seems to be doing fine. He did have a runny nose with lots of sneezing last night and some coughing jags today. Fortunately, neither devolved into anything more serious. It's interesting that Monday's 'event' (a term frequently used by the medical staff) seemed to increase Sawyer's appetite. I guess it is also possible that his appetite may have something to do with the recent addition of predisone to his medication  regime. Right now Sawyer is at home playing some video games and doing some homework - wonderfully boring...

Discharged

Sawyer was discharged this afternoon about 4 pm after receiving another unit of red blood cells and his first unit of platelets. Hopefully those will boost his system enough that we won't need to go back until his regularly scheduled appointment next Monday.
He has to take Benedryl and prednisone for the next couple of days at home to ensure there's no residual reaction in his system. The visiting nurse will come on Thursday for her normal visit and hopefully we'll just be back on track. We don't ever want to again go through what we did yesterday.
The doctor said that the chances of someone having the allergic reaction to the extent the Sawyer did is 1 in thousands (in other words, very rare).We'll say it again, thank goodness for the staff at Strong and that it happened while he was in the clinic -- I can't imagine if the reaction had happened later on, like in the car ride home.
This update should wrap up this latest unpleasantness -- look forward to more upbeat ones to come!

Morning Update

I'll start off by reassuring everyone that Sawyer is well and there's no expected lasting effects from his experience yesterday, and he doesn't remember most of it since he was unconscious. So luckily his memory is only of not feeling well and then waking up with lots of people around him. He's piecing things together and I think understands the severity of the event, but seems to not be letting it weigh him down. He is calm, positive and continues to be very polite and patient with the various personnel who come into his room.

The night was overall uneventful but with the number of nurse visits, checkups and machines beeping there was very little sleep. (The ICU policy only allows one parent to stay in the room, so I stayed and Mark checked into a hotel down the road around 11 pm). He received fluids and Benedryl through the IV. He also got a blood transfusion in the middle of the night after his blood levels were checked and found to be lower than desired (they were low on his last test on Thursday, so we were expecting a transfusion anyway). That helped boost his blood pressure and give him some color back. They will be running a couple more tests this morning to determine if he needs platelets as well.

We will talk with the doctors soon for a catch up conversation but that probably won't happen until the test results come back so they have a fuller picture of what's happening (his platelets and hematocrit are low). They may keep him in the ICU and give him platelets and send him home, or they may decide to move him onto a regular floor for further observation and follow-up.

For now, he's enjoying breakfast of pancakes, cereal and yogurt (the most he's eaten in a couple weeks) and catching up on movies on the hospital tv system while texting friends on his phone -- still a typical teenager!

"That was a close one"

The title of this post is a quote from one of the Intensive Care doctors that attended to Sawyer as he spiraled into anaphylactic shock. During the administration of chemo at Strong Memorial today, Sawyer had a severe allergic reaction that proved to be life threatening. In a gross understatement, this was a frightening experience as his dad (the writer of this post) watched Sawyer turn red, then begin to feel a burning sensation all over his body. Benedryl was ordered but couldn't come fast enough. By the time the Benedryl arrived, Sawyer was in full panic stating that he was losing his sight while at the same time scratching himself and begging for the medicine.At this point his father noticed that Sawyer's color turned white, then his eyes went blank and he was unresponsive, slumping in his chair. He then began to throw up and turned a grayish-blue. At this point his dad was pinned in the corner of the room as a couple dozen medical staff descended on the scene. Watching with a sense of shock, confusion and horror, his father was removed from the room as one nurse started to administer CPR while another cleaned his airway and attached a breathing bag . With little recollection of leaving the room, Sawyer's dad was quickly met by a social worker and the hospital chaplain. The arrival of the latter was a clear signal regarding the dire nature of this situation. Within a few minutes (about ten), a nurse came out to report that Sawyer was breathing on his own again. A few minutes later that same nurse reported that Sawyer was stable and being moved to PICU (Pediatric Intensive Care Unit). His father was allowed back in the room where Sawyer was groggy, but responding to questions. The move to the PICU was efficient and expedient. Sawyer quickly responded to all treatments. It is now about five hours after the incident and Sawyer has been removed from the breathing tube and is doing remarkably well. After sleeping for the past several hours, Sawyer is now sitting up, watching TV and eating a couple bowls of cereal. 

"That was a close one." The ICU doctor said this more than once. It was easy to see that Sawyer was a bit disturbed to hear that his mortality was threatened, but he seemed equally relieved to hear that he had an allergic reaction and not a heart attack. The same physician just examined Sawyer and was pleased and amazed with how well Sawyer bounced back. He noted that Sawyer should not have to worry about a relapse and should be able to go home tomorrow. This day turned out considerably better than when his father was trapped in the corner wondering how or if this would turn out. Despite our current sense of relief, today  served as an all too vivid reminder of the challenges that lie ahead and must be surmounted. It also served to remind us of how thankful we are for the medical staff here at Strong and for prayers, incredible  kindness and concern of our family and friends.

Unexpected scare

Mark took Sawyer to the clinic today and during the administration of a drug he's had before he had an allergic reaction and went into anaphylactic shock. They  had to use the crash cart to resuscitate him and he is currently in the pediatric ICU for observation until at least tomorrow. Needless to say, Mark is unsteady on his feet after the experience and I'm sure Sawyer is pretty scared as well. Say some extra prayers for us tonight - I'm heading to the hospital to be with them and my mom is going to stay at the house with our dogs.
The doctor said it's not unusual for patients to have an allergic reaction to a drug they've had before but it's unusual to have such a strong reaction.

As far as I know right now, everything is okay but it was certainly an unexpected scare.

Zero

Zero continues to grow and show his personality! He's about 9 weeks old now. He and our other dog, Nana, are really starting to interact and play (and tire each other out!). Zero has been sleeping well enough at night that he tried sleeping in Sawyer's room for the first time instead of one of us sleeping with him in the living room. He made it until 4 am and then decided he wanted to be up and around for a little bit. We had our first chewing casualty today - he managed to sneak in enough bites to Sawyer's computer charging card to render it unusable (and Sawyer only left the room for a few minutes). Luckily, Mark and Sawyer should be able to go to the Apple store tomorrow to get a replacement.

Semi-Formal

Sawyer and Maya

We had a few minutes of worry on Friday afternoon that perhaps Sawyer wouldn't be able to attend the semi-formal after getting his blood test results. His counts were pretty low so we checked with the clinic and sighed with relief when they said it was okay. They're really good about encouraging their patients to stay connected with their friends.
Mark and I drove Sawyer to Maya's house to take pictures only to find out that she was still at Swain Ski Slopes, being tended by the ski patrol after having fallen and twisted her knee. She's on the Alfred-Almond varsity ski team and they were just finishing up with a race. Fortunately, it's not a bad injury but it was sore enough that she needed to keep it wrapped and use her crutches. Once she got home, she changed into her pretty red dress (her parents had graciously bought Sawyer's tie to match), we took some photos and dropped them off at school. The dance started at 7 pm and was over at 10 pm. They arrived shortly before 9 pm. It was actually a good thing since Sawyer wasn't planning/expecting to stay for the whole event anyway, and this helped give them a structured time frame!
Sawyer has talked with Maya today and found out that her knee is feeling a bit better, and we hope that it continues to improve quickly.

Late update, apologies

I realized that we're late in posting an update, sorry. The clinic visit on Monday was fairly standard although for the first time we had to wait about 20 minutes to be called in and another 20 minutes before anyone could talk with us. Usually we hardly get sat down in the waiting room before we're called and we see a nurse right away.

One side of his port wasn't cooperating so he did get poked twice instead of once (he has the double port so they have two options of where to put the needle, or they can put in two at a time if needed). They will flush out the uncooperative side at his appointment next week (every now and then they get plugged up). The nurse removed the needle and Sawyer said "why are you taking it out?" - she hung her head as she realized that she was supposed to leave it in so he could get chemo at home the next three days by the visiting nurse. So we got the needle and supplies for the visiting nurse to access him again on Tuesday at home.

Tuesday afternoon Sawyer called me at work and asked where the chemo was since the nurse was there to administer it -- it was my turn to hang my head as I realized that we were supposed to have picked it up at the hospital pharmacy on Monday before we left. I quickly called the clinic and asked the nurse practitioner what we should do (mostly I was worried that it was going to be a big problem if he missed his dose). She reassured me that missing a day was okay but we would need to get the chemo from the hospital. The doses are pre-filled syringes and contain a drug that our local pharmacy isn't able to supply. I called Sawyer back and talked with the nurse who was waiting to find out the next step. I said I needed to go to Rochester and she said she was willing to go pick it up. After we "argued" back and forth for a few minutes I finally relented and let her drive up there to get it. She came back to the house about 7 pm and administered it after accessing him (the needle and attached tube are left for as many days as needed and can't bathe with it in). Tomorrow is the last dose and he'll be able to have a clear chest again and jump into a hot shower.

His diet lately has been consisting mostly of vanilla yogurt, peanut butter and jelly sandwiches, toast, Pirate's Booty cheese puffs, cheese quesadillas, apple slices, ginger candy and flat ginger ale. Overall he's feeling better than last week but still nauseated and somewhat worn out. Strong smells also bother him so Mark and I have to be careful what we cook, or where we eat anything that has peppers, onions or spices.

He is planning on attending his school's semi-formal on Saturday and all indications are that he will be feeling mostly up to it. The event is a dance held right at the school. He may get together for dinner and picture beforehand. It's good for him to have these chances to get together with friends and attend social functions. He'll take a mask with him just in case he feels he needs it but we don't insist that he absolutely wear it. Hopefully we'll be able to post a photo of him and his date next week.

Zero is growing quickly and learning "the ropes" quite well. He does a good job of letting us know when he needs to go outside, sleeps 6-7 hours at night and is slowly convincing Nana that he can be her friend. He loves to bark at our cat who just sits and looks at him, with little or no reaction.

And we are back to receiving meals three times a week from our gracious community. I look forward to the time when I can return the favor to someone else who will benefit from such a simple act in the future.

Easy day at the clinic followed by a difficult evening

Yesterday Sawyer resumed his treatments and all went well. He received two types of chemo with the entire process taking about eight hours. Sawyer seemed to be doing fairly well until about 11:30pm last night when he became extremely nauseated and began throwing up. This lasted for quite a while before he could go to bed and then he was up a couple more times during the night. The plan is to begin the anti-nausea medication routine once he is awake to hopefully mitigate this problem. Unfortunately this is unlikely since he is receiving chemo orally for the next two weeks and via his power-port for the next three days. On a related note, it looks like the next ten to twelve weeks will be difficult due to the intensity of the treatment. According to his Nurse Practitioner, once he gets through the next several weeks, he will begin receiving a much more manageable dose of chemo as part of his next round of treatment. That being said, it is safe to say that chemo in any form has its challenges.

Welcome to 2012!

Hard to believe that it's already January 1st, 2012! We woke up to temperatures in the mid-40s this morning after spending a relaxing New Year's Eve with some of our best friends.


Since Sawyer has been feeling so well (what a relief it's been to see him full of energy and eating regular meals), he and I are going to actually go to the theater in Hornell this afternoon to watch a movie, either Sherlock Holmes or Mission Impossible. Typically he's not supposed to go to places like movie theaters, but since his counts are so high and the Hornell theater generally doesn't draw a crowd, we're going to take advantage of this opportunity since it will be a number of months before he could think of going again.

The weather folks are saying that we're due for quite a few inches of snow starting sometime tonight and going through Tuesday. Mark and Sawyer will keep an eye on the weather and may decide to drive to Rochester tomorrow afternoon and stay overnight so they're not trying to fight bad road conditions and morning traffic on Tuesday for Sawyer's 9 am appointment.

We wish everyone happiness, good health and blessings in the new year. We know the spring will be tough for Sawyer but once we get to early summer life should start to be brighter for him. We're planning to stay positive, to keep things in perspective and just get through it all until then. And that's only possible with the continued support of all our friends and family.