Learning about BCR-ABL results

We met with Dr. M and got more test results on 5/28/08

Tyler's numbers were:

WBC: 3.5
HCT: 31.0
PLT: 160

In addition, we got the results of Tyler's BCR-ABL test from earlier in the month. The doctor says this marker continues to improve, although a little bit slower than one would like. It's been tough to understand these since they are measured in log reductions and it has been a long time since I got to dig in on a math topic like logs. Essential the ratio is the number of abnormal cells divided by the standardized normal number of cells.

In any case, Dr. M shared with us the results from the last few months.

Feb: .5
Mar: .3
Apr: .3
May: .1

While Tyler still has abnormal cells, there has been continued improvement so the doctor opted to leave him on the same dosage schedule for now.

We don't see Dr. M until the last week of June, although Tyler will continue to go in for weekly blood tests this month.

Get automatic updates

Did you know that you can now subscribe to our blog in a reader or by e-mail? If that would be easier for you, you can click on the links on the right hand side of the screen. Thanks for your support!

Test Results

Tyler's Blood Counts stayed low this week, but he had no dosage change. Next week we see the doctor and should get the results of his BCR-Abl, so hopefully it is all good news!

WBC: 3.5
HCT: 31.2
PLT: 170

Need venue for fundraising dinner

I'm looking for a place to hold a fundraising dinner for our Light the Night team this summer. My preference would be to hold the event on a Saturday evening in August. If you know of a facility that we might be able to rent for the evening with little or not cost, please let me know via comments to this post or e-mail. We are open to different locations, but would hope that the size could accomodate 50-100 people for dinner and possibly a silent auction.

I'm also looking for volunteers to help -- food donations (I'm thinking a Spaghetti dinner could be delicious), setup crew, cleanup crew, donated auction items. If you have time to donate, that would also be much appreciated.

Thanks!

Mandy

Test Results Update

Tyler counts for the current week were:

WBC: 3.5
HCT: 33.4
PLT: 181

Happy Mother's Day

Happy Mother's Day to all of the moms around us. We wish you all of the accolades that you deserve (we know you are unsung heroes)!

Creeping Up

Tyler's blood counts on 5/7 were as follows;

WBC: 3.8
HCT: 33.1
PLT: 198

Prayer Request from a friend

I received an e-mail today from an old friend of mine asking for prayer and I wanted to share the request with you in case you are able to take a minute to pray for this family as well. Amy worked with me at the Seattle Learning Center about 10 years ago, but has gone into full-time mission work since then. She is an amazing woman and I have no doubt that she has touched many, many lives in her work in South America.

Here is her request:

Dear Friends,

I had gone to bed tonight but I just couldn't stop thinking about this prayer request. . .I kept thinking, if I really believe in prayer and the power that the prayers of many can have, then I can't wait another minute to send this out.

Yesterday I was coming out of a meeting at the Children's Hospital here when a man approached me. He kind of scared me but he said, "Amy, do you remember me?" It took me a second, but I did remember him. I quickly realized that he was the husband of a woman named Rosa that used to work for my friend Ruth and her husband. I also quickly realized that if they were at Bloom (the Children's Hospital), then something was probably gravely wrong. But, I hadn't seen them in about two years, so we exchanged greetings and then he tried to tell me what was happening without letting on to the desperation of their situation. By the end of our conversation he was in tears.

Margarita, their 3 year old daughter had been in the hospital for 10 days and at that point they had diagnosed her with profound anemia. Today though, they learned that she has leukemia.

Rosa and Guillermo were incredibly kind to me in the first few months of my time here. We shared meals together, we laughed over my broken spanish, we talked about the difficulties of life here. I know that it was no coincidence that I just happened to be walking out of that hospital yesterday at the exact time that they were exchanging clean clothes for Rosa who is having to take care of Margarita in the hospital as it is the responsibility of the family to find blood donors, bathe the children, and even help with injections, etc. . . I also doubt that it is a coincidence that I have this empty house right now, less than a 20 minute walk from the hospital.

I don't know what you do for a family that has received such crushing news. But, I think that you believe for them when they can't believe. You hope for them when they cannot hope. You pray for them when they cannot pray. You make a space for them to weep or to be angry or to just be away. You walk with them. And I think, you do anything you can to make sure that that baby stays alive.

So, that is what I am going to do. My request is that you would do those things with me, the ones that you can from far away. Please pray for them, and for me, that I would know what to do to support them through this time. Honestly my first response was, "I don't want to get over involved in this. This could be an unending need." But you know, I have to remember what God taught me a long time ago: He can't ask us to do something and not provide all that we need to do it.

Thank you for your prayers,
Amy

Holding steady

Tyler's numbers from the 4/30 blood count were actually quite surprising to both of us. We learned that, while his numbers are low, they are consistently low and didn't appear to be dropping too strongly. He is definitely anemic and has a slightly low platelet count, but the doctor decided not to change his dosage as we expected.

Every time Tyler has had BCR-Abl test results since his relapse in December, the markers they look for have been creeping down. This is one of the biggest benchmarks of whether or not the treatment is working, so that's great news. While we wish they would drop faster, any improvement is good.

On another interesting note, Dr M told us (for the first time in my recollection) that Tyler has the P210 mutation of leukemia and that Sprycel was showing to be the best drug against that mutation of those that area available. He said that the mutation had been there from the start, but other types of leukemia cells had overrun his body and made this one harder to find.

Next week, they'll take an extra vial of blood to get another BCR-Abl test. We don't know the results until we meet with Dr. M again on 5/28, but we will hope to see positive blood results each week in the meantime.