Waiting Game

Tyler survived a marathon doctor's appointment at SCCA, but overall it was a good thing. They confirmed that he does have GVHD, but are waiting on the results of a pulmonary (lung) function test he took in the afternoon. I ended up being sick on Tuesday and couldn't join Tyler at his appointments, but I hear he tracked down many of the staff members that we interacted with over the last year. The people were definitely the very BEST part of our time at SCCA!

Tyler's mom was also in town for the day, so she was able to drive him home after his appointments and catch up the latest and greatest. She made me realize that some of the improvements that I take for granted now should be shared with those of you who have joined us on this journey.

- Tyler is now walking without his brace about 90% of the time. He was getting stronger with the physical therapy, but decided in August(?) to try going without the brace more and more often. He's now golfing without and credits his best score ever (a 74!) with the ability to rotate his ankle again!

- He got his 1st Post Transplant hair cut and is looking really good (especially on the days when he shaves)! I promise to post a picture soon.

- He's able to eat anything he wants, as the end of his immunosuppressant drugs (Tacrolimus) means the end of a restricted diet! Bring on the blue cheese!

- He still isn't back to work, but considers it occasionally. He's been working to build up his strength and endurance so that he can resume his job as soon as possible. There are some concerns that the nature of his job (groundskeeping) may pose risks beyond just the physical toll, so we're doing what we can to consider all work options.

Miscellaneous Questions and Answers

A friend e-mailed a few questions about Tyler and I thought that others might have the same questions, so I should answer them on the blog.

1. Is Tyler sleeping all the time (like before)?

Tyler is not sleeping full nights yet, but he is sleeping better. He's actually been using a drug called Ativan to help him sleep at night, but gets about 6 hours of sleep in a typical night.

2. What is the status of Tyler’s foot? Has it returned (or worsened) due to recent radiation and chemo treatments?

Tyler's foot continues to be a source of frustration for him. While he can move his toes about an inch upwards, the foot is still extremely sensitive and largely unresponsive. It has not worsened, but we expect it to be a long time before it completely heals. There is also a risk that it might never heal completely. Tyler worries that he will have trouble working if it does not heal, as his job as a groundskeeper requires him to be pretty mobile.

3. Is Tyler reachable via email?

Tyler is not currently reading his e-mails, although he will probably catch up on them someday. If you need to get a message to him, you can e-mail me to pass along your message.

4. Is the radiation risk completely over? Did it “wear off” or something, such that he must no longer be isolated?

As I understand it, your body actually processes and excretes radiation through your urine. So Tyler got a radioactive transfusion Thursday before last, but his body was able to process and excrete the radioactivity over the days that followed. He was released as soon as he was under the safe guidelines for our state. The radioactivity level would continue to drop as his body continued its normal functioning. While we haven't measured him in the last few days, I would guess that he is probably not radioactive anymore.

5. Is TBI a round of intense radiation? I did not realize that he could be an outpatient at this point in the process.

Tyler's TBI tomorrow will be outpatient, which sounds like it is normal for these procedures. Actually, we were also surprised by how much of this is outpatient. According to the radiation oncologist that is handling Tyler's TBI, he is getting the smallest possible dose of TBI. They are only doing this to help suppress his immune system so that it will accept the foreign marrow.

6. Are the doctors already discussing possible complications due to partial match (half-match?) on the donor vs receiver? I did read the CML booklet on this, and it of course acknowledges a wide range of possibilities.

The doctors prefer not to tell us about things like possible complications, although they likely discuss them in their morning rounds (when they discuss each of their active cases). The half-match issue has been my biggest worry throughout this process. It is my opinion that someone wanted Tyler for this study so they never attempted to search for a better match in the world bank. While we pushed and pulled on this issue, we made no headway in getting them to give us additional options for the transplant.

There is however, an upside to using a parental half-match. Typically, you experience less graft versus host disease (GVHD) with a related donor. I'm not sure how things will work since there will likely be an increased risk for GVHD with a mismatched donor and less with a related donor. I'll try to address GVHD more in a future post, as it is a big issue with transplants.

7. Are you able to work a reasonable number of hours? You must be running constantly, exhausted.

My coworkers have my undying thanks for allowing me to be with Tyler throughout this process. I'm not sure how I can ever make it up to them, but their flexibility has made all of this possible. I work as often as I can, often from home or the hospital. We've pared down my responsibilities as much as possible, but I feel guilty not helping out more. I was working 1-3 days per week, but am mostly off now. I only worked 4 hours from home this last week and plan to be off completely this next week as well. I'm the lead on a big project at the end of February, so we'll see how I balance work and home as I get closer to that deadline.

I also owe my thanks to the friends and family members who have helped us to keep up with day to day tasks. Several of Tyler's high school buddies came up and weeded our front yard (since I would have probably pulled out all of the plants without Tyler's guidance) and completed some home maintenance, Debbie (my mom) who helps with grocery shopping and house cleaning, and Andrea (Tyler's mom) who helps get Tyler to appointments so that I can sneak off to work from time to time.

Several others have offered to help, but timing doesn't always work. Even if we haven't been able to take advantage of your kind offers, we certainly appreciate them!

We are both getting tired though and are ready for some time of normalcy. Sadly, I think we have a little bit of time before we get there. If Tyler's side effects are kept to a minimum, we may have some downtime over the next 2-3 weeks while waiting for engraftment. Once the new marrow starts making blood, any side effects that he had should start to diminish.

I hope that answers a few of your questions as well!

Scheduling Challenges

Tyler had a long day today, although most of the time was spent waiting around. He had an 8am appointment at UW and then 11, 12:30, and 1:30 appointments at SCCA. The biggest challenge of the day was that he wasn't allowed to eat before his 1:30 appointment, so he was hungry the whole time he was sitting around.

I was supposed to take him to his appointments, but opted out for illness reasons. I've been feeling a cold building for a few days and finally had a sore throat last night in this morning. The SCCA's policy is that patients can go to their appointments when ill, but must wear a mask. Caregivers and other visitors must stay home if sick, as they do not NEED to be at the appointment. I hate the rule, but probably should follow it.

Since early fall, we have actually had to fill out a form before proceeding to any of our SCCA appointments. They ask if you have had any signs of a cold or the flu in the past week. Both patients and their companions are supposed to fill out the form and get a sticker in return that says "I've been screened."

So... Andrea (Tyler's mom) took him to his appointments and I went to work instead. Isn't that crazy? I was sick, so I DIDN'T take a sick day from work. But... it was good to save my leave for another day when I can be of more assistance. And I was able to teach the class I had asked a coworker to cover for me. And just for the record... I DON'T recommend going to work when you are ill. I'm just crazy.

Unfortunately, I also have to keep some distance from Tyler at home too. I have to remember not to kiss his gorgeous face as I might unintentionally pass along some of my germs. Let's hope that I get healthy soon. I had planned to work Thursday and Friday of this week, while Andrea took Tyler to his appointments.

Tyler reports being tired and achy today, and reported a slight temp during his evening nap. Other than that, he looks good. They reduced his TPN (IV nutrition) dose today, so he'll be eating more and more over the next week. Things are definitely moving in the right direction now. We just have to get him as healthy (and now me) as we can over the next week, so that he can be successful during the transplant.

Thanks for cheering with us about the results from the lumbar puncture. It's great to have so many friends and family members cheering with us!

Test Results Update

Tyler got a blood draw today and called me to let me know his vital statistics.

WBC: 3.4
RBC: 32.1
PLT: 179

Debbie (our fabulous oncology nurse) says that they are a little bit concerned about the fact that his Red Blood Cells dropped again this week, but they will keep him at the 80mg dose for one more week to see. Luckily, we have a bye from soccer this week, so we don't have to worry about him playing soccer while anemic.

In other news, this weekend is the 84th Annual Garden Sale at Children's Hospital. You can get complete details at the Foundation website, but the basics are that you can buy all sorts of greenery on Saturday and Sunday, April 26 and 27, 9 a.m. to 5 p.m. at Children’s Administrative Offices, 70th & Sand Point Way, Seattle. If you happen to be going to the sale, check out Tyler's handiwork -- the sale is being held at the site he manages!

Moving on to the Spleen

Tyler's doctor's visit this week went really well. It was interesting that the doctor told us during our visit that he had actually been thinking about Tyler for two days before, wondering if the new dosage would turn out to be the right one. It seems like it must have been a good start, because everything the doctor looked at this week looked positive.

His WBC were 3.0, his HCT was 28.7, and his platelets were 138. Dr. M said his liver enzymes were down (I assume that means less toxicity from the medication) and everything was as he would wish. He even had Tyler schedule a spleen scan for next week. Many of you will remember that Tyler's last spleen scan allowed him to return to soccer. We're trying not to pester the doctor every week about when Tyler can return to the pitch, but I can't help but be hopeful.

The only downside of the visit was that the doctor said Tyler will need to be on light duty at work through the month of February. Ty does have the freedom to monitor his own work schedule, but was hoping that his body would repaid quickly enough for him to return to work full time. The last time he worked his regular schedule was the first week of December, so it has been a bit odd.

I know he has been happy to be back to work part time and has been careful not to overdo it in his daily chores. As he rebuilds his lost strength, I think we will have an easier time each day.

This weekend is Julie's birthday, so we are off to a family celebration now. It's so great to have an excuse to party!

Mandy

Does He Look Pale to You?

I think Tyler is starting to look a little bit pale with all of the blood he's been giving over the past two months... What do you think? (Just kidding!!)

He went for another blood test yesterday and all of his major counts went down. I must admit... I am confused with what is happening to his counts and nervous that he will drop into the danger zones on some of them. For those of you following the numbers, Platelets were at 108, White Blood Cells were at 2.5, Red Blood Cell (actually his Hematocrit) were at 26.5. The doctor lowered Tyler's Sprycel dose to 90mg per day (from 110mg) with yesterday's test counts. We'll see how his blood looks with that change at our doctor's appointment next Wednesday.

On the upside, he did start back to work on Friday 1/18 and has been working part time since then. I think he is enjoying getting back into work, although he is a little bit stiff after such a long break from activity.

We are headed to Wenatchee for the weekend to celebrate my cousin's wedding. I look forward to seeing as many family members as are able to travel to Wenatchee with the cold winter weather. We are so excited to share in Bryan and Heidi's celebration.

See you there!

Mandy

He's 2/3 Normal

Tyler had another blood draw and doctors appointment on Wednesday, January 16th. With great pleasure, we can share that Tyler is now 2/3 normal! His White Blood Cells remained in the normal range, his red blood cells climbed a little bit, and his platelets got back into normal range (151). Normal range for platelets is 150-400, so he's kind of pushing the "normal" designation, but we take what we can.

He also was granted the work release we have been hoping for. He's only supposed to go in part time and stick with light duty stuff, but it's a definite step in the right direction! Today was his first day of work, so I am curious to hear how it went.

We were also supposed to get our final piece of new furniture delivered and I am excited to see how fantastic our room looks with the new bedroom furniture. (Thanks to the Keiths for helping us to be grownups!) The stuff we've already gotten looks fantastic, but we still felt like we were in a state of transition. With today's armoire, we should be able to finish moving things around.

Thanks for the prayers and kind inquiries!

Mandy

Hello everyone, it is now June and things keep getting better every day! Earlier this week I had an ultrasound on my spleen to see if it had returned to its normal size. I received a call from the doctor yesterday and was told it had indeed returned to normal. This means that I can be active without worrying about damaging/puncturing my spleen.

I was able to join the soccer team last night for the first time since last november for outdoor soccer. It was such a great feeling to be out on the field again! I was able to play most of the game without getting too tired, but had to take several water breaks.

Work is also much better for me as my energy has increased steadily, and I feel I am getting close to 100% again. The chemotherapy medicine they are treating me with has been so amazing for me. Not only is it searching out and destroying the mechanism in my body that creates the "bad" white blood cells, but I feel better than I have in probably two years! I have minimal side effects with this medicine also, which is lucky because many people do have problems with side effects including nausea.

I have so many things to be thankful for, including all of you that have prayed for me, thought about me, and helped me get through this initial part of my battle with this cancer. I am so thankful to have Mandy in my life as she keeps me grounded and always looking forward to each day!

Take care,

Tyler

Entry for May 31

Tyler's BCR-Abl test earlier in the month was not completely negative, so the doctor decided to postpone the bone marrow aspiration. Tyler is down to only 30% abnormal choromosomes in his blood, which Dr. McGee said was good progress for where we are in his treatment cycle.

He did, however, finally allow Tyler to get his spleen scanned to determine if he can return to our favorite sport. On Tuesday of this week, Tyler got an ultrasound on his spleen to see if it has returned to normal size. We should get the results from that test either today or tomorrow. We have a Coed game tonight, so we are both hoping that the results come in today and that he can resume all of his regular activities. It's been tough on Tyler to not get the chance to run around and see our friends regularly, so this is a very important milestone for us. If you get a chance (and see this entry today), please say a prayer that the results come in as we hope.

Tyler continues to feel pretty good in every other way. He ran the 7mile Rhody Run in honor of his grandfather last weekend. Although his time didn't live up to what he's done in that race in the past, he completed the race with a minimal amount of training and no soccer in recent past. I was very proud of him for remembering his grandfather in such a special way. They'd both run that race several times in the past. Tyler can probably elaborate more on that...

I survived Mom's software conversion, although I think the jury is still out on whether or not Mom survived it. It was a pleasure to get to have lunch with her for almost two weeks straight, but both of us were disappointed that we didn't get to work together more. I'm hoping she'll have a reason to call me for support at some point in the future though... I do have to admit to being very impressed with Mom's management style. You probably wouldn't be surprised, because so many of you know her well, but she is a beacon of calm for her office even when overworked herself. She uses logic and compassion, intelligence and involvement to bring the best out of her staff. All of my teammates and I were very impressed with how great their staff is. I was extremely impressed with Mom and wanted to share with those who also love her.
I'm hoping that Tyler and I will have more good news to post later this week, but will close for now. Thanks for your continued support and for taking the time to read our blog and find out how things are going with us. Much love to all of you!

Mandy

Plant Sale Prep

Tyler is busy preparing for the Children's Hospital Garden Sale this weekend, so I am not sure if he will have time to post this week. Yesterday was another blood draw and all of his counts look very close to what they were last week. This is GREAT news for both of us! He has had blood draws in normal ranges for several weeks now, which is one of our major goals.

Next week when we meet with Dr. McGee, we will ask him again if Tyler can play soccer. Last time we asked, the good doctor said we needed to wait until we had a month of consistent test results under our belts before we could even think about getting a scan of Tyler's spleen. But... it looks to me like we have finally reached that goal! (no pun intended!) Tyler is feeling good and is anxious to get back on the field. On top of that, we have some soccer scheduled during our trip to Walla Walla next weekend and it would be great if Tyler could play a little while we are there.
We had a lovely dinner with Tyler's cousins Nate and Heidi on Tuesday evening. It was a real treat to get a tour of their new home and share an evening with them. They were so gracious about having us over and providing us with incredibly tasty food. Their three kids entertained us with stories of they accomplishments and we enjoyed talking about the stories Nate and Tyler had heard about their dads when Scott and Jim were younger.

Another week closer to Tyler playing soccer is another week closer to our short term goal. I think I'm almost as excited as he is for that day!

Much love to all of you,

Mandy