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.

The Final Countdown

Tyler has agreed to check into the hospital on Thursday of this week to begin his Induction Therapy. We anticipate that he will be in the hospital for about a month, so we are trying to clean out our DVR before he goes. ;) It's amazing how addicted we've gotten to our set of shows.

He's feeling generally crappy right now and still has that lingering cough. It's hard to see his spirits so low and his appetite down, but we hope that the Induction Therapy will knock the CML out of his body again. the real question is what to do afterwards.... The doctors are advising another round of DLI, which would mean giving Tyler more of his Dad's white blood cells to stimulate an immune response. We are also still hoping to get Tyler qualified for a clinical trial to find a drug that might keep things under control. Tyler is also entertaining the idea of a second transplant.

Thanks for your encouragement! We are so very thankful to have you in our lives and keeping us on this path towards (hopefully) a cure for Tyler's CML.

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

DLI Day

Thursday is Donor Lymphocyte Infusion (DLI) day! Scott (Tyler's dad) will be starting his apheresis process early in the morning. They'll collect the white blood cells and then return the rest of his blood to him. Tyler and Kate will spend time with Scott, helping to pass the time.

They'll do a little testing on the blood collection and then start Tyler's infusion at about 4pm. It should be a relatively easy process to receive the lymphocytes, as Tyler has gotten many blood transfusions at SCCA. Basically, we'll just hang out and watch TV while the blood is pumped in through an IV.

We do want to take a minute to thank the many people who took the time to send us a note after Tyler's post about Unknowns. We were both very moved by the encouragement that we received and the prayers being said on Tyler's behalf. We know that we would not have our positive attitudes about this process without the great support around us! Thank you so much for posting a comment or sending us an e-mail (or talking to us in person if we are lucky enough to see you in our daily lives).

We hope that this will be the treatment that finally works!

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.