Home again!

Just a quick note to share that Tyler and I finally go to come home from the hospital today!  He is still dealing with most of the same issues, but the doctors finally said that they weren't doing anything in the hospital that we couldn't do at home.  I am really looking forward to sleeping in my own bed tonight!

He will have follow up visits every other day at SCCA, so they will keep a close eye on him.  We also need to connect with our team down in Houston to see what to do.  Today is Tyler's last dose of ponatnib, so we really need to get back down there and get him another month of medicine.  Because the medicine must be closely controlled through the clinical trial, Tyler has to get down to Houston to get refills.  At this point, I think they might be the only ones that have the trial going right now.

Ty-Fighters Day 22

So far the Ty-fighters seem to be working really well. I've been taking the drug for 3 weeks now and, as expected, my white blood cell count and neutrophils have dropped very low. Being neutropenic gives me less energy, and puts me in a much more precarious position for getting infections, fevers, etc.... So far I have not been sick, but I'm being very careful and doing lots of hand washing, drinking lots of fluids, sleeping, and eating well. I have needed to go to SCCA every other day for blood draws and transfusions. Most of the transfusions have been to give me platelets, but I have also needed some red blood cells a couple times. The reason I believe that the drug is working is because on Day 1 when I started the ponatnib, my blast % was at 79%.....meaning that 79% of the cells they looked at in my blood sample showed disease. Every blood draw since day 1 has shown the blast % to decrease, with my most recent blood draw showing that percentage down to 10. That was on day 20.

Clearly the amount of Ty-fighters have decreased, but the Stormtroopers have decreased far more significantly. Actually, my day 20 blood draw showed a slight increase in white blood cell count and my neutrophils doubled from 30 to 60 which may be a good sign. Any sign of an increase in neutrophils is good and I will know more tomorrow. So now it's off to recruit more Ty-fighters and get some good sleep.

Clear eyes.........Full hearts......Can't Lose!

Tyler

Ups and Downs

Last week, Tyler had some serious ups and downs.  On Monday night, he woke up about midnight and found, after blowing his nose, that the blood wouldn't stop.  Since his platelets had been low on Friday, we were certain that a low platelet count was the reason that he couldn't clot.  We went to the ER and, after about 4 hours, Tyler got a bag of platelets and finally the bleeding stopped.

The doctors really wanted to observe him for a few hours, to make sure that there were no lingering effects from the blood loss, so he got admitted for the day.  Thankfully, he was able to come home mid afternoon, after another bag of platelets.

He went to SCCA on Wednesday to check his blood counts again and learned that he needed some red  blood cells, so he got more transfusions on Wednesday.  And again on Thursday and Friday...

We were nervous over the weekend, but he made it through safely.  We also got to enjoy the comedy of Jim Gaffigan on Saturday evening, which was a surprise treat for Tyler. (Hot Pockets.....)

He heads to Houston tomorrow for his Day 15 appointment. I am predicting that Tyler will spend about an hour in the waiting room, a half hour with the doctor, and 3 days in Houston overall.  I'm really glad that most of our treatment has been in Seattle!

Climbing the Hill

Great news from today's doctor appointment!  Tyler's neutrophil count is up to 420!  Once he gets over 500 neutrophils, he will get to cut down on some medications and eliminate some of his current activity restrictions.

He is feeling pretty good and starting to add more foods into his diet.  His doctor says that Tyler can try to start getting some exercise, so he'll be working on that too.

The Booster Shot

Tyler's DLI was not exactly what we expected.  Scott's lymphocyte collection took about 2 hours, after which he was able to go home and rest.  I picked Tyler up at his dad's house and we headed down to SCCA.  We got there a little bit early, but weren't able to get in for treatment until about 4:15pm.

The doctors came to see Tyler while we were waiting for the lymphocytes to be shipped over from the next building.  Dr. Flowers was practically bouncing with excitement, as she explained to us that Tyler would be the VERY FIRST person to receive a donor lymphocyte infusion from a HAAPLO donor.  She said that HAAPLO-Identical transplants usually have more GVHD and may develop other complications, but don't usually have to get a DLI.  Somehow, Tyler and his dad were just "getting along" a little bit too well.  I've decided to instigate some fights between the two of them, in hopes that Scott's marrow with start fighting with Tyler's leukemia a little bit more.

The actual infusion was really quick because they only gave Tyler 10cc's of lymphocytes.  They froze the rest of the collection from Scott, in case they need to give Tyler a future booster.  The doctor had indicated to use that she could give Tyler 10^6 or 10^7 lymphocytes, but they wanted to use the higher dose so that they could really attack this disease.

Now that we are done with the actual infusion, we wait.  They will monitor Tyler with monthly blood tests, but say that we should not expect changes for the first few months.  He is off his Tasigna (the leukemia medicine he's been on for the majority of the last 18 months), but they have started him on a 6 week course of Interferon.  Tyler has to give himself a shot every night (fun if you love needles, right?!) of Interferon.  This is the drug that they used before Gleevec came on the market, and it is supposed to make him feel like he has the flu for the next few weeks.  So far, so good... But it was only shot #2 tonight.

Thanks for all of the prayers and the encouragement!

Mandy

The Battle Continues...

We met with the doctors at SCCA today to get the results of Tyler's testing.  Sadly, they tell us that the leukemia is back in play in Tyler's body.  We had seen signs of this in his blood tests, but the ultimate sign that he needs some additional treatment came from his bone marrow.  They'd hoped that the marrow would be clear, and only the blood was showing signs of the disease, but this was not the case.

The doctor strongly recommended that Tyler continue with plans for a Donor Lymphocyte Infusion (DLI).  This means they will draw blood from Tyler's father (who graciously donated marrow about a year ago) and separate out the white blood cells.  Tyler will then get a blood transfusion of just those white blood cells.

The idea behind his treatment is that Scott's white blood cells should recognize that the leukemia is not supposed to be in Tyler's body and attack it.  This is known as the graft versus leukemia effect.  The downside is that Scott's white blood cells will also think TYLER'S body looks foreign and attack him as well, causing a new round of Graft versus Host Disease (GVHD).

The doctor said that the response rate for this treatment has been very good, but of course we are concerned about the possible side effects.  Tyler really wants to get back to work, but is worried that the GVHD will make that difficult.  We'll just have to take that as it comes though, since it is not a guarantee.

Monday's Testing

Today went really well at SCCA!  Tyler had about 10 tubes of blood drawn for various lab tests to kick off the morning.  Then he had a comprehensive physical looking all over for any signs of Graft Versus Host Disease (GVHD).  He did show small signs in his mouth, but in general they rated him as not having GVHD.

Then, the team cancelled 2 of his appointments for tomorrow and 2 of his medications (at least until Thursday's final conference).  His blood test results showed that he was well within acceptable ranges.

Finally, he had a bone marrow aspirate (to which they added a bone marrow biopsy and a skin biopsy).  It was fairly uneventful (thanks for the lovely drugs they give him) and the fact that they got marrow on the first attempt.  He's a little sore now from the bone marrow procedure, but we'll have a low key evening and he should be feeling better by tomorrow.

Thanks for all of the prayers for his good tests.  Our friend, Hans, has his 3 month bone marrow aspirate tomorrow, so we would ask that our friends say a prayer for his test results as well.

Studying for his Finals

Wednesday marks the 1 year anniversary of Tyler's bone marrow transplant, so we have been invited back to SCCA for testing.  They prepared us for this during the preparation phase, explaining that transplant patients get tested for about a week at the 1 year mark.

We kick things off with a questionnaire detailing all of the possible symptoms that Tyler might be experiencing and a bone marrow aspiration on Monday.

On Tuesday, Tyler will get a Pulmonary Function test (to evaluate the health of his lungs), a dental exam (to look for signs of GVHD), and an eye test.

Wednesday is a quiet day, but he will get all of his vaccines on Thursday and evaluate his medications at that time.  I really hope that they decide he can taper off some of his current medications now that he is passing the critical 1 year mark.

Tyler has been studying hard so that he can pass all of his tests, but a little help from friends and family wouldn't hurt either!

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.

Back to Where it Began

When Tyler had his checkup with Dr. McGee last week, he mentioned that he was having some mouth soreness. They called SCCA, who requested some photos of Tyler's mouth. It appears that he is finally showing a few more signs of Graft-vs-Host Disease (GVHD) which is a mixed blessing for us. Some GVHD reduces the risk of a leukemia relapse, but it also carries a risk of damage to his organs (if left unchecked).

The end result is that we are headed back to SCCA to meet with their long term follow up team on Tuesday. Hopefully this is just a one time appointment, but we'll likely learn more when we get down there.

Other than the mouth sores, Tyler continues to thrive. He is building up his strength and relearning skills he had lost (like how to fill the dishwasher).

Nurse Appreciation Week - May 6-12, 2009

We just wanted to give a shout out to all of our wonderful nurses from the SCCA and UWMC during Nurse Appreciation Week. Nurses are true partners in the care of any patient and we were amazed by how much we relied on them in so many ways. With the nurses we worked with, they had been through so many of the same things with other patients that they were able to explain to us what might happen based on their experience. You could see the empathy that they had when Tyler was in pain and the sensitivity they had to deal with the less glamorous side of nursing.

This picture shows Jackie, our primary nurse from SCCA. She was AMAZING and we are definitely going to miss seeing her every week. I don't know how she was able to keep all of Tyler's details clear over the last 9 months, but she was a point of consistency for us throughout our time at SCCA.

Day 100 - Free at Last!!!

We had our FINAL appointment at SCCA today and we're still in shock! Tyler, Andrea, and I met with Jackie (his nurse for the entire time we were there) and Maria (his doctor this month) to discuss whatever details they had for us. The biggest thing they warned us about is to watch for signs of GVHD as the Tacrolimus level is being tapered off over the next 3 months. Apparently chronic GVHD occurs in about 60% of transplant patients during months 4-12.

Then they pulled his Hickman line out. It's strange to think that Tyler will no longer have direct access into his veins. In fact, he will have to get poked for his blood draws from now on, rather than having the blood drawn from his line.

Tyler had been nervous about this procedure, as they had to insert the line with a surgical procedure, directly into his vein. But everything went really smoothly. The doctor felt along the line (just barely visible under his skin in the picture above) and basically just gave a few tugs to get it out. It did hurt as they pulled it out, but Tyler held strong anyways.


In a few days, I'll be able to hug him without worrying as much about smacking his line with my naturally klutziness. He's developed a technique of guarding against any sudden moves that I might make.

We are incredibly thankful that this phase of the Battle is over and are looking forward to embracing "normal" life again! We'll continue to post, as the blog has become a great way for us to share both highs and lows and we don't really know what comes next in this battle we are fighting. It's been 9 months since we began this journey towards transplantation at full steam and we're delighted to announce that the outlook is good today!

Thanks for celebrating with us!! We'll try to touch base again over the weekend.

Day 91 - Nine Days to Go!

It feels like smooth sailing to us these days. We had a great weekend, with my non-stop eating machine (Tyler) keeping me in the kitchen much of the time. I'm not complaining at all. It's a treat to be able to cook for him and have him actually enjoy eating. I think he probably ate 6 full meals each day over the weekend.

We have talked about how refreshing it is that he is actually hungry again and has cravings for different things. Added to that, Ty has had a release from some of his diet retrictions which have allowed us to eat some of our favorite foods again.

With only 9 days to go at the SCCA, I am getting so excited to mark the passing of that milestone. This time since the transplant has been so much easier than the leadup to it. I'm actually thankful that we got much of the stress and agony done in the fall, although we are still suffering from some of those effects. His stomach issues have definitely improved and we are hopeful that his foot will be healing over the next several months.

His physical therapy is going well and they are starting to wean him off of the Tacrolimus, which is his immunosuppressant. Reducing this medication should allow his tremors to decrease and his neuropathy to decrease. I'm getting excited to see him moving around yet.

We have been charged to keep an eye out for rashes or intestinal issues which can be a sign of Graft Versus Host Disease (GVHD), but they have a schedule that will implement. For this week, he is taking 2.5mg in the morning and 2mg at night. The only reduction was the nighttime dose for this week.

The End is in Sight

After today's appointments, we are pleased to report that we have a final appointment for SCCA and... our first appointment back with Dr McGee! The last day that Tyler will be an SCCA patient is May 7th. Halleluah! While we have worked with some amazing staff there, we are still excited to mark the end of our journey with them.

After reviewing his blood tests today, they told Tyler that he could relax his potassium diet guidelines. Thank goodness for that! I never realized how much I rely on beef or pork or tomatoes or beans or spinach or milk in my cooking. To be able to use those again means that Tyler and I get to start eating good food again.

In fact... Tyler wanted a steak to celebrate his final lumbar puncture, but it wasn't allowed last week. I'm thinking that it might be time for us to visit the Keg for a great dinner. As his parting goal from the nutritionish, Tyler is supposed to work on gaining a couple of pounds each month over the next several months. I think that most of that will be muscle mass as he continues to increase his activity level.

Also, they got the results of his bone marrow test. We are thrilled to report that there is NO SIGN of the leukemia in his bone marrow.

We are counting our blessings today!!!

Day 30 - The End of the Month

Can you believe that it has been a month since Tyler's transplant? It's gone very quickly from my perspective, but I imagine that Tyler wouldn't exactly agree. It's good to see him starting back towards some of his regular activities though. Andrea says that it gave his nurse heart palpitations when he mentioned that he was golfing again. Thank goodness we had cleared it with the doctors last week! As long as he takes no more than a half swing and avoids grass, dirt, and people, he should be fine.

Today was our last visit with Peter Johnson though. He's been Tyler's provider the majority of the time since October and has done a fabulous job of caring for Ty. When we started with SCCA, we were a little disappointed when the provider would rotate off every month. Peter was Tyler's 3rd provider during our initial visits. But during the time we were at UWMC last fall, he rotated to inpatient care for a month and then rotated back to the outpatient clinic for December through February. It felt like he really made the time to listen to our concerns and experiences and that made me feel more confident in the care that was provided. One of the other providers we had in the clinic always seemed like they had to be somewhere else, which was exceedingly frustrating. I know the doctors have lots to do and many things on their mind, but still want the focus to be on Tyler during the times we meet with them.

Anyways... I'm not sure who our new provider will be, but I do know that Peter will be missed. Many thanks for getting us to our transplant!

Test Results from today are:

WBC: 3.36
HCT: 30
ANC: 2.41
PLT: 71

Day 18 - Happy Valentines Day!

Tyler's blood test results were something to love today!

WBC: 3.68
HCT: 31%
PLT: 13

We hope that his platelet level continues to stay above 10 tomorrow, so that we don't have to stay for a platelet transfusion.

It was nice to have such a quick and easy day at SCCA. We went in for a blood draw and didn't have to wait at all -- there were no others there at the same time. Then we went up to the 6th floor to get the results of the test. The charge nurse said that we could go. Talk about an easy day at the doctor's office.

On the down side, we think Tyler is starting to show some signs of GVHD. We hope that it doesn't get much worse, as it makes his stomach feel unwell. Eating is enough of a challenge, but we could use all of the relief possible from eating related challenges.

We hope that each of you got to spend time with your loved ones today.

Day 17 - You Want Us to What?

Today's lab draw wasn't until 10:45, so we got to have breakfast at home. It's amazing how much easier that makes it to eat healthfully.

After the lab draw, we were supposed to wait around to see if Tyler needed to get his Filgrastim shot. We checked in for the 11:30 appointment and sat around in the waiting room. After about 30 minutes, the staff came to tell us that we didn't need our appointments.

Tyler was thrilled to hear that we didn't have to stay for any more appointments, but we still wanted to get the blood counts for our blog. So we snuck upstairs and one of the charge nurses got Tyler's basic counts for us. It's more good news!

WBC: 3.58 (normal 4-10)
HCT: 30% (normal 37-52)
PLT: 17 (normal 150-400)
ANC: 3.18

Day 16 - Punchin' the Time Clock

Sometimes Tyler and I talk about how fighting cancer is a full time job. Tyler works every day to eat and exercise and sleep enough for his body to heal. It's definitely a lot for him to worry about, especially if our schedule is disrupted.

Today was one of those days that felt a bit like work. We had our first appointment at SCCA at 9:15 this morning and didn't leave until just after 5pm. There is cause for celebration after today's visit, however.

After our lab appointment we had clinic with our team nurse and team doctor. They schedule these once a week to keep tabs on Tyler and make sure things are still going well. Our nurse, Jackie, checked Tyler's vitals when we first got there. When our doctor, Peter, got there he asked if Jackie had told us the good news. Jackie hadn't said anything about good news, so they got my curiosity up.

Still we had to ask what was up. It turns out that Tyler is doing SO well that they are stopping the IV antibiotic and switching the Tacrolimus to pill form. We were going into the clinic for daily infusions for those two items, which meant at least a few hours there every day. With this schedule change, we think most of our days will be lab draws, once a week clinics, and physical therapy appointments.

In addition, they will be stopping the Filgrastim shots either today or tomorrow. They've warned us that the blood counts will probably drop a little bit once they stop giving Tyler that booster shot, but we can live with that (especially since the shots are painful to get).

So... Are you ready to hear Tyler's blood counts from today?

WBC: 2.11 thousand (normal 4-10)
ANC: 1.79 thousand (normal > 1.0)
HCT: 26 % (normal 37-52%) --> We got red blood transfusions today
PLT: 17 (normal 150-400)

His hematocrit (HCT) was 26% yesterday, so I was pleased to see that had held steady. And his Platelets (PLT) got a good bump from the platelet transfusion yesterday.

Day 11 - Date Night

We had a pretty low key day today. Tyler's uncle, Don, surprised us by stopping by to say hi. Tyler's mom, Andrea, also came to visit this afternoon, so we had some fun entertaining.

They've changed Tyler's schedule here, as he is doing so well that he needs less support. He gets about 1 liter of hydration in the morning, but it only runs for about 4 hours. He gets one IV drug and might get some blood transfusions, but those can typically be run at the same time as the hydration. This means that we spend the majority of the day and night unhooked. It's significantly easier to get out for walks, move around the room, and pretend life is normal when you aren't tethered to an IV pole.

This evening, we got caught up in watching a few of the movies on TV. Tyler hadn't seen Apollo 13 and I haven't seen it in a long time, so we sat back to enjoy a movie night together.

We appear to be on track for a departure tomorrow, but we're reluctant to hold our breath this time. Tyler's Tacrolimus level was still at 3 today, so I am concerned that may delay our departure by a few days. They seem to want to bump that number up before they release us. We still stand a chance though, as the attending physicians rotate off duty around the 7th of each month, giving us a new Outpatient Attending to approve or deny our departure.

Changed their Minds

The attending physician in the Outpatient Clinic decided she didn't want Tyler is the outpatient clinic yet, so we are set to stay here for 2 more days. Bummer! We weren't thinking about going until the inpatient doctor said something this morning, but now we are very disappointed to have the plans change.

They will be watching the Tacrolimus level for Tyler over the next two days as a benchmark for discharge. They want him to be in the 10-15 range when he is at his lowest point for the medicine in his system. Yesterday morning, he was only at 3.