Saturday, May 1, 2010

Future Treatments

One of the tough things that we learned this week is that there aren't really many treatment options for Tyler, even after we get through with this.  I am not really certain how to deal with this news yet, but here is what we have learned:

1. Donor Lymphocyte Infusion: One of the options for Tyler was to give him more of his Dad's cells to try to boost up the transplant and increase the Graft versus Leukemia effect.  After much testing at the SCCA, they have determined that this will not work.  Tyler's leukemia has figured out how to mimic the donor cells to avoid being killed off.  Basically, Tyler and his dad are getting along far too well.

2. Clinical Trial:  Another option that we were considering was a clinical trial for one of the fabulous new drugs under development.  Unfortunately, the drug companies will not take Tyler as a candidate for their study because of the central nervous system involvement.  If we can prove that Tyler's spinal fluid has been clear of leukemia for at least 3 months AND all of the chloromas have disappeared, we might be able to beg our way into a study in the future.  We're not sure what to do in the meantime though to keep Tyler's disease under control until then.

3. 2nd Transplant with a new donor:  This option hasn't been completely ruled out, but still isn't a real strong possibility.  Basically, the conditioning regimen to prepare for transplant would be tough on Tyler in his current state and make it harder for him to come through the process successfully.  Additionally, it takes time to find a bone marrow donor.  There just aren't enough people on the registry to make an easy match for everyone, and Tyler was told with his first transplant that he would be tougher to match.

So right now, we continue to work towards getting Tyler healthy enough to come home.  After that, we don't really know what we will be able to do to keep fighting a particularly nasty disease.  Here's hoping some inspiration comes in the next few weeks!  Our goal is to get him home and get him feeling a little bit more normal so that he can actually enjoy some of his time, while still fighting the battle as long as we can.

With all that we have learned this week, I would say that prayer for a successful treatment option would be especially appreciated.  Many thanks for sharing this journey with us and helping us to continue fighting.  We are touched by the thoughtfulness of the family, friends, and even strangers that have encouraged us in our battle.


  1. Dear Mandy and Tyler
    Praying hard, harder and then some.......
    And sending you both huge hugs too.
    love and light

  2. Both of you are in my prayers. I am so thankful that you have each other, you are a fantastic team!! I am looking forward to hearing 'he's coming home'!!

  3. As Nemo said "Just keep swimming, keep swimming, keep swimming..."
    Huggs and kisses -Mikel

  4. Sending support, healing thoughts and prayers!

  5. Mandy - I sent out prayer request through my church and there's hundreds of us praying for Tyler. Hang in there. You are not alone. Don't give up hope.


  6. Thinking and praying for you both tonight. I heard on Rush Limbaugh (of all places) that some drug company is testing a new treatment for resistant CML that actually involves taking certain cells out of the body, altering them in some fashion and reintroducing them. The approach is supposed to counteract the effect you described in which the leukemia mimics the donor cells. This approach is in its infancy; Rush said that it had brought two people into remission, and the company was looking for seven more candidates. I have no idea what the name of the company is, what the name of the treatment is, or even how to go about finding out. He only brought it up because he was raising money for the Leukemia and Lymphoma Society and wanted to demonstrate that people's donations were genuinely funding effective cutting edge research. But any option is worth investigating at this stage. I love you, Tyler!

  7. Mandy and Tyler

    As someone new to CML and considering this procedure, my heart and prayers are with you..from what I have read Tyler you are amazingly strong and determined - I pray that together you will make the best choice for yourselves and your future...Hope and determination are the strongest medicine against this disease...

    Cheryl Thornton

  8. You are both in my prayers!! I have been following your blog and am inspired by both of your strength as you battle this disease. Stay strong and I pray you will be home soon!

  9. Don't know what to say, but sending prayers and healing your way.