Tyler bows before his wife's superior skillz

Tyler and I have been in the habit of predicting his platelet count over the last week and I've had a pretty good record so far. While I missed yesterday's count (by a whopping 9), I was dead on this morning and it was the best one yet!

For the first time this month, Tyler's platelet count increased on its own! He actually climbed from 28 yesterday to 31 today. Our nurse says that platelets are the last thing to recover from a marrow crisis, but it's great that Tyler's finally gotten there. While we have had no tests to see test for abnormal cells, this test suggests that the Sprycel is doing its job and getting the blast crisis under control. Once the blast crisis is back under control, Tyler's body is able to make useful cells like healthy white blood cells, red blood cells, and platelets.

Another bonus from today's visit is a brief hiatus from the doctor -- we get to sleep in tomorrow and avoid going to the hospital for a blood check. It'll be only our second day away from the hospital/doctor since we got back into the country. :) We are so excited to have a day off!

We are hopeful that he has turned a corner in this current battle and thank you for your continued prayers!

Mandy

An Excellent Report Card

Yesterday, Tyler was right at the borderline for needing red blood cells and hydration, so we fully expected to spend today at the hospital getting infusions. We also expected his platelet count to be on the borderline today, since he has been burning through about 12-14 per day and was at 32 yesterday.

In a stunning change of events, Tyler's tests today allowed us to leave the hospital by 9:30am and prepare to spend the day however we wish. His red blood cells climbed from 27.7 yesterday to 28.1 today AND his platelets only dropped to 29! Dare we hope his body is starting to produce a few on its own?

Tomorrow's test will probably give us a good idea, but we're hopeful that maybe his blast crisis is getting back under control. Say a prayer with us, will you?

Thanks!

Mandy

High Octane Fuel

Tyler is on daily blood checks this week to make sure his platelet and red blood cell counts stay at a good level and today's check indicated that he needed a little boost in platelets. So we headed across the parking lot to get his fueling. He says it is funny that he doesn't feel any different with his platelets at 14 (today's count) or his platelets at 40 (Monday's count). His red blood cell count has been holding steady, so we are thankful for that.

After a little hiccup in getting the platelet request to the blood bank, they found a match and got the unit of platelets to us as soon as they could. Tyler was hooked up to an IV for about an hour to get the drip and then we headed out. Unfortunately, it was a day of delays. We left home at 8:30am this morning and I dropped him off about 2:30pm after all of that. Where does the time go??

Overall, he is doing well, so we are very thankful for that. We did learn a lot more about stuff going forward and some of it was hard for us to hear. If Tyler opts for a transplant, he will likely be on immunosuppressant drugs for the rest of his life. I don't really know that means in terms of work, soccer, other parts of life so we need to look into that. It also looks like Tyler will probably need to get platelet transfusions about every 3 days for a little bit.

They should have a better idea of how well he is responding the Sprycel after a few weeks, which will determine what happens next with his treatment. Dr M2 (filling in for our regular oncologist over the holidays) says that they will not be able to do the transplant while Tyler is in a blast crisis. It is critical that we get his disease back under control.

Here's hoping the Sprycel does what we want it to do!

Mandy

My Favorite Christmas Gift This Year

After many prayers and much hoping, I am happy to share that Tyler came home last night! We got home from the hospital last night about 6:30pm and basically collapsed on the couch. It's amazing how much energy you expend when you spend days in a hospital.

Today we are spending a quiet Christmas at home. We're sad to pass on the family gatherings today and tomorrow, but we need the time at home to rest up. We hope to see everyone in January (maybe at Bryan and Heidi's wedding reception if things are going well) or soon after.

We had a doctor's appointment this morning and the doctor gave us the freedom to be home for the rest of today and tomorrow. Tyler's numbers were good today: his Red Blood Cell and platelet counts were up and his White Blood Cell count was down.

Merry Christmas to all of you!

Mandy

Ways You Can Help

Several people have asked what they can do to help after hearing the news that Tyler is fighting a new stage of Leukemia. Here are a few things that occurred to me:

1. Give us a call. We would love to knkow that you are thinking about us and hear what is happening in your lives. Sometimes we want to pretend that things are normal, so forgive us if we change the subject to something other than Tyler's health. With that in mind, I don't mind talking about how he is doing, so if you have questions please feel free to ask.

2. Pray for his health. It means a lot to know that people are out there thinking of us and praying for his recovery, his treatment, etc. There is so little that we can do and so much that God can do on our behalf.

3. Make an appointment to donate platelets or blood. If you live in the Puget Sound Area, you can contact the Puget Sound Blood Center to find out where they are having drives. Donating blood takes about 15-30 minutes and donating platelets takes about 2 hours. Tyler got his first platelet transfusion today and we expect several more, so it would be wonderful if we could fill up the blood banks.

4. Consider registering for the National Marrow Donor Program to see if you are a match for anyone out there needing a transplant. Information about the Puget Sound Blood Center's upcoming drives can be found here. You must be between 18 and 60 and in good health to join the registry and if contacted as a match, it is essential that your respond quickly on whether or not you are able to help the patient in need. If you do not meet the guidelines to register as a donor, they say you can help but donating funds to help cover the registration fee for another person. It costs about $52 to complete the tissue typing, so there is some cost involved for the potential donor too. It is likely that Tyler will need a stem cell transplant in the next several months so we are looking to be prepared for that. Full siblings are the best likelihood for a tissue and marrow match, so they will start the testing with Tyler's brother. If he is not a match, they will be looking in the NMDP database for an unrelated matched donor.

To relieve any fears out there, the research I have done over the past few days seem to indicate that more transplants these days are Stem Cell transplants from the donor's peripheral blood (probably in a process similar to donating blood), and it does not necessarily involve taking any marrow from the donor. You can read a fact sheet here if you want to know more.

The need for persons of minority to join the database is critical, as most of the registrants at this point are caucasion. While Tyler won't match with a registrant from a minority group (ethnicity is one of the matching criteria), you can help us to spread the word and maybe we can help someone else in Tyler's shoes.

If Tyler's brother is not a match, expect to see us posting our call for friends and family to join the NMDP and share the word with as many people as we can at that point. Nothing needs to be done at this point, unless you are moved to register with the thought of helping anyone. I'll continue to learn more over the next few months and share the information with you.

Thanks so much for everything!

Mandy

In a Holding Pattern

Disappointing news this morning from Dr R. He's the one covering for Dr M over the holidays, so he visited us today to check how well Tyler had responded to the platelet transfusion yesterday.

The good news is that his platelets climbed from 12k to 44k thanks to the added boost yesterday. They want to monitor how fast his body goes through this batch of platelets before letting him go home, so that we can have an undisturbed holiday before visiting the doctors again next week. So, we are in a holding pattern today. Tyler will be in the hospital for at least one more day.

While we are disappointed that he won't get to come home tonight, we are both very encouraged by his blood counts today. His platelets are up and his white blood cell count has continued to fall. He's into the teens today (16.3k) and they've stopped the Hydrea pills (which cause his WBC count to fall rapidly).

We have decided that, even if Tyler is out of the hospital for the holidays, we are going to stay home for Christmas Eve and Christmas Day. We will miss seeing family at the gatherings that we know are taking place, but we really feel like we need to have a few days at home to regain our strength. Please know that we wish you a very Merry Christmas and we hope to be out and about much more in January.

Mandy

Great Possibilities

When we met with Dr M (and our favorite Oncology nurse, Debbie) this morning, the doc said that Tyler was essentially healthy enough that his remaining symptoms could be treated as an outpatient. However, we could not leave the hospital without having a supply of Tyler's medication (Sprycel). Just an interesting fact on that... Dr M says that Tyler is the first Premera patient to be approved for Sprycel. It's a relatively new medication, having only been approved by the FDA in June 2006. A newer version (Tasigna) was just approved yesterday, so more possibilities are on the horizon.

Anyways... Tyler called me this afternoon to say that the medicine was supposed to be in at the pharmacy until late today. I just got off the phone with them and it is in now, so I am off to pick up Tyler's medication. Hooray for that because it means he will most likely be released TOMORROW!!

Merry Christmas!

Mandy

More Details

In talking with Dr M this morning, we continued to learn more about Tyler's status. The most difficult thing for us to hear, I think, is that his leukemia has progressed to the next stage. The disease is trying to run rampant inside his marrow, so new drugs are needed to fight this resurgence.

We also talked to Dr M about the possibility of a transplant. He clarified that he was anticipating that Tyler would most likely get a Stem Cell transplant, not a bone marrow transplant as I had originally anticipated. Some of the reading today indicated that a Stem Cell transplant is considered to be a cure for CML. It will be interesting to keep reading about the process and learn more.

I have to admit that we are a little more scared today than we were before and will have to change how we plan for our upcoming months. We don't know too much yet, but I'll be reading more over the next few weeks.

Nothing is certain yet, but the doctor says that he will need to keep Ty in the hospital until he is in stable condition, which may be a few more days yet. I'm hoping that he will be able to come home before Christmas, but if not we are taking Christmas to him in the hospital.

Merry Christmas!

A Good Week, but now some concerns...

We had a very good honeymoon and will fill you in more on that front in a later message, but for now I thought it more important to get the news out about Tyler's health. On Monday, December 17th, we had an appointment with Dr. M to get the results of the Bone Marrow extraction from the 12/4 and the Gleevec level test that Novartis (the manufacturer) was offering from Dec 7th.

After being off Gleevec for a full week, we were hoping that Tyler's platelet count had climbed back up into a more comfortable range. Unfortunately, Monday's test showed that he had actually dropped to 21 for his platelets and his White Blood Cell count had climbed to 52000. This is a bad sign and, an in combination with the Gleevec Level in his blood, indicates that his disease is no longer responding to his chemotherapy drug.

The doctor also discovered that Tyler had a temperature of 101-102 and an ear infection and recommended that he check into the hospital that night to get both of those things under control with intravenous antibiotics.

He is switching Tyler's medicine to Sprycel (the next generation of drug after Gleevec) as soon as the hospital pharmacy can get some and we'll hope for a positive response to that. They do say that Tyler will most likely need a transplant now to fight his disease. We hope to learn more over the next few days.

He doesn't feel really sick, so he is resting fairly comfortably in a private room. I think his biggest challenge will be boredom, so I'm taking a stack of movies to him tonight. Frequent score updates will be helpful for any NFL games being played this week (although I'm hoping he will be out in time to watch them).

Thank you for the prayers being said on his behalf and for the calls and e-mails sharing love and support. He is currently at Steven's Hospital, in Edmonds, in Room 802 if you want to call or come by. Visiting hours are 2pm - 7pm and we expect to be at the hospital for a few days this week, if you decide you want to visit.

Thanks!

Mandy

Wow! We've had more than our share of trials recently. It all began on Halloween (Tyler's birthday) and we've been battling different issues since then.

Probably one of the most challenging is the fact that our mini has been totaled (from a minor collision) due to some damage of the engine block. Tyler was hit by a lady entering a road from a parking lot on Halloween evening. He was completely stopped and she just never saw him there. He's been fighting with the insurance company this week to get fair compensation from them for our vehicle.

So... We are in the market for a vehicle. Ideally, it will be something that is reliable and handles well in the snow. Other than that, we are somewhat flexible.

The other challenge that we are currently facing is a slight blip in Tyler's health. We went in to Dr. M's office on Tuesday for a bone marrow aspiration. This was pretty much a 3 month follow up from his last bone marrow test to see how his body has been responding to the Gleevec. His blood test that day revealed a low platelet count, which is one of the danger signs for Ty. He's been hovering in the upper 100's (175-190 range) for several months, but this test showed him down at 106. The normal range is 150-400 for platelets.

I asked the doctor if we needed to be worried about anything for our upcoming trip and he immediately got worried. We have decided that the mere thought of a week away with me stresses Tyler out completely, so his body's response is just his way of trying to avoid a honeymoon.**

Thankfully the doctor got the hint that we were going on our honeymoon regardless and came up with some alternate strategies. Tyler went in for another blood test this morning to see if Tuesday's test was in error. Unfortunately, today's test showed that his platelets dropped down to 86 and his white blood cell count had climbed from 7400 to 12400. Target range for his white blood cells is 4800-10800.

The doctor has taken him off Gleevec for the duration of our trip, but we DO get to head out of town. We could use some prayers that his platelet count climbs back up and he responds well to the Gleevec when he goes back on next week. We don't tell you this to worry you while we are out of town and unavailable; just a message to keep all of you up to date on our crazy life.

On the upside, we are flying to Miami TOMORROW to begin our long awaited honeymoon. We'll be cruising on the Carnival Valor to Belize, Cozumel, Grand Cayman Island, and Honduras. It's going to be so very great for us to get away and spend some quality time together over the next week. We'll take a bunch of pictures of the beautiful places we see and share some of them online when we return.

Much love to you!

Mandy

**Tyler's theory is that the stress of talking to Farmer's Insurance Agents has caused the unusual spike in his WBC and drop in platelets. Also, the bone marrow extraction involves a needle penetrating his sternum, so he thinks that wound may cause some of the white blood cell spikes.