Getting Back on Track

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

Zero

Clinic visit delayed

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

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

Merry Christmas from the McFadden Family

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

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

Cheers to all!

Clinic (again)

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

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

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

Transfusion Time

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

Clinic Visit - 12/12/11

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

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

He's a Prince

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

Bright spot in the week

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

Latest clinic visit

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

Songs for Sawyer

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

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