Sunday, August 29, 2010

Results are In

Actually, I have known my bone-marrow results since August 19. I am just a little slow with posting. More of that later.

I will be thrilled if this is what I see every day when Kaden gets home from school. His first day of 8th grade was great. Actually, he said it was awesome! The 2nd day was welcomed the same way. I am thrilled and hope it lasts! Beginning jitters are gone (for Kaden)!

I tried to get a shot with my hair, I do have some. Between the stairs, the backpack, me, and Kaden we just couldn't get it to work.

Back to the results. My coordinator, LaDee, called a passed along the percentages of my chimerism tests and educated me on a couple of things that were confusing me. Here is what I found out:

1. No leukemic cells are visible in my peripheral blood, my bone marrow, or my spinal fluid. Good!!! Still in remission, technically, and no CNS disease.

2. My T-cell chimerism showed 43% donor cells, down from June's 62%. This is the peripheral (blood flowing through my veins) blood sort focused on T-cells only. Of course, the higher the % of donor cells the better. T-cells play a large role in the immune system.

3. My bone-marrow chimerism showed 17% donor cells, down from June's 21%. The bone-marrow chimerism represents the total number of all cells in my bone marrow, not just T-cells (this is where I have been confused). The higher the % of donor cells the better.

4. My doctors would like to see 100% donor cells in my peripheral blood and my bone marrow.

5. I am awaiting results regarding the translocation of chromosomes 4 and 11. If the translocation is still present there will be greater concern regarding relapse leukemia. I should know the results after my clinic visit on Friday.
To sum up the situation, my doctors are not certain what will be the best course of action. Dr. Peterson, the doctor with the most knowledge pertaining to my situation, has been and will be discussing my case with doctors from around the country. He wants to get some feedback from clinics that see more patients. That way he has info based on a larger population. Here are the options I know of, and you will understand why my team of doctors are questioning what the best course of action is:

1. Do nothing. My engraftment (% of donor cells in my body) will probably continue to decrease or will "peter out" all together. This may be fine. I may not have a relapse, or I many have a relapse. I can live with a mixed chimerism (my cells and donor cells sharing house). Many patients live long wonderful lives, and some do not.

2. Do a donor lymphocyte infusion (DLI), increasing the number of donor cells in my body and hoping for a solid engraftment; causing little graft vs. host disease (GVHD) and relapse in the future.

3. Do a DLI, increasing the number of donor cells in my body, causing little GVHD and relapse in the future.

4. Do a DLI, increasing the number of donor cells in my body, causing severe GVHD and no relapse in the future.

5. Do a DLI, increasing the number of donor cells in my body, causing severe GVHD and relapsing in the future.

6. Then there is the issue of a preparatory regimen before doing anything.

Ideally, I would have a DLI, the cells would maintain their engraftment, I would get a little GVHD, and I would not relapse in the future. As you can see from the scenarios presented above, there is no way to guarantee that outcome. I trust my doctors. I know they keep up on current research, they communicate with doctors across the country, and the communicate with their team at LDS hospital. Please pray for them. I pray their minds will be open to learning and understanding protocols developed by others. I pray that my doctors will listen to the Spirit and will allow themselves to be open to his whisperings. I pray my doctors will be directed in determining the best course of action for me, personally. Friday, September 3, is the day I go to clinic to meet with Dr. Peterson and to find out what he feels will be the best next step. I am anxiously waiting to hear what he has determined.

Back to a fun note. My family (minus Kim, Joanie, Taylie, and Lindsay) went to the Bee's baseball game on August 21. My nephew Chase's baseball team was recognized at the game. Very exciting!

Here is our crew of kids: Chase, Austin, Brooke, Kaden, Ethan, Eli, and Tate in the front. The Bee's lost, but we still had fun. The fireworks after the game were nice too.

Much Love,


Friday, August 13, 2010

#9 Bone Marrow Biopsy Complete

I had my ninth biopsy yesterday. Everything went fine. A little happy medicine and pain medicine make the process close to painless. The biopsy is taken from my hip - around the area where the top of the back pocket on a pair of jeans sits. My biopsy has been taken from the same darn spot the last 5 times. I guess it is a good spot. I hope that my chiropractor and massage therapists will be able to work out all the scar tissue that is sure to be in the area.

My labs look good. My platelet count stayed the same, but everything else went up. Yeah! My white cells and neutrophils are both in the low-normal range. My red blood is 6.5 points from low normal. My magnesium is now in the high-normal range. No more Maggie!!! For those of you not familiar with Maggie, it is the name given to the pack I've had to carry around for 1-4 hours each day since leaving the hospital. The pack housed the pump that was hooked to my magnesium/saline bag, that was hooked to my red tri-fusion line, that went into my body to keep my body hydrated and my magnesium count around normal. It will be nice to give Maggie a rest. :)

While at the clinic I did get bad news from my friend Liz. Her transplant didn't work - she has 0 donor cells. Plus, her leukemia is back. She was diagnosed just before I was. I had my transplant in Feb and she didn't have her transplant until June. The hold up was caused by Medicaid. They didn't want to pay for the procedure. Question 1: Would her transplant have been more successful if she had it sooner? Liz could have another transplant but, again, Medicaid doesn't want to pay for it. Liz's words were "what, they just give you a death sentence?" Question 2: Isn't the life of a young woman worth the fight to save? Question 3: Why does insurance have so much say in a person's opportunity to live? Question 4: Considering her insurance is Medicaid, why on earth would I want a government-run healthcare program? I really have no desire to have a healthcare debate on this blog, so please don't start. These are just questions that I have been thinking about. I am simply bothered by the situation.

All that said, please keep Liz and her son in your prayers. They are both having a very difficult time; especially her son. Liz and I have never discussed her beliefs in a higher power, but I know that the power of prayer is real. I know that she and her son can find peace through our Savior. I also know that the prayers of many truly bring blessings of peace and comfort.

Coming up: Just waiting to see what my bone marrow shows. It takes 10-14 days to get results back.

Much love,