Today, after his routine outpatient labs and vitals, Todd was scheduled to see his Leukemia Doctor, Dr. Benton. We had been anxiously awaiting his bone marrow aspirate results from Monday, October 31, 2016, but were also a little "freaked-out" to learn that his platelets had completely bottomed out at 0!!!! The rest of his counts were not great either: whites went up to 0.10 and his hemoglobin was 7.8.
I started out by telling Dr. Benton this and asked if it was dangerous for Todd to be walking around with ZERO Platelets; Shouldn't he be admitted? His answer was no. And that ZERO really wasn't much different from the 2,000 or 3,000 counts he has been experiencing this past week. He obviously cautioned Todd to be careful not to fall, bump into anything, be involved in a car accident or something else, but that if he was careful, he would be ok.
We showed him Todd's hands, that had started peeling on the sides and the severe petechiae that had developed this past week all over Todd's legs and feet. His calves actually looked bruised all over with the petechiae spots everywhere. All of this, of course, was due to the low or non-existent platelets.
We asked if he had the bone marrow aspirate results from Monday, October 31, 2016. He said yes and it showed residual disease. We both asked what was the blast count? We were devastated when he said that the blasts were at 20%!!! The tears just started flowing uncontrollably. I was in shock. Todd's counts were at 21% before he started he chemo regimen of DAC + CIA last month. Dr. Benton said he was surprised too, and this may be a unfavorable sign that a second transplant may not be successful. He acknowledged that Todd's disease seems to be very resist to treatment. He wasn't ready to give up yet though. He preferred to wait one more week and see if the blasts would go down. I asked "Is that possible?" He said yes, the chemo can still be working and he has seen other cases where the blast counts went down significantly from 21 days post-chemo to 28 days post-chemo. He wanted to give it one more week to work and then do a repeat bone marrow aspirate to see if the blasts go down.
"Bone marrow aspiration is the removal of a small amount of this tissue in liquid form for examination."
"Bone marrow aspiration is not the same as bone marrow biopsy. A biopsy removes actual marrow for examination." -Yi-Bin Chen, MD.
He was concerned though, that by this point, it was the disease causing Todd's poor blood counts, and not the chemo. This was such hard news to swallow. We didn't want to share it with anyone! I didn't post an update online or tell the kids. It was hard enough for us to digest; we didn't want to burden the kids since they already had enough to deal with regarding school/college.
He asked if we had seen the kids or had they planned to visit yet, and we said that our youngest two were going to fly in for the weekend visit the next day. We were all looking forward to the visit and I didn't want to dampen their spirits before they arrived by telling them this news before they left.
I have met wonderful lady through Facebook who messaged me to share her husband's experience at MD Anderson and offered some advice. Her husband is about the same age as Todd, and has AML. He was also treated with AG221 in the past, but didn't have the success Todd had with it. He had a bone marrow transplant here and despite getting Graft versus Host disease, had success with the transplant 9-10 months out. I remembered that he had two rounds of chemo induction, and asked her if it was because the first round didn't work as well. She told me that her husband's blasts were high at 21 days post-chemo, but that they dropped significantly by the following week or day 28. He even went to transplant with 8% blast cells! So, all this gave me encouragement. I am so grateful for others who have walked this path before us and are willing to share their experiences! This is one of the main reasons I continue with this blog!
The next question, was what happens next? What kind of treatment will be pursued if the counts do or don't go down? Dr. Benton said he would recommend a second round of the same exact chemo regimen if the blast counts were to go down. If they don't go down in a week, then he would scrap that regimen and look at something else. He said he had some things in mind, but would start looking into it more. He scheduled a second bone marrow aspirate for Monday, November 7, 2016.
After the appointment, we went to the ATC to sit and wait (and wait) for his transfusions. Instead of going to the main ATC on the 2nd floor of the main building, we were sent to the Mays Clinic ATC, which is quite a distance away. We had to take the golf cart shuttle and wait for two or three hours before we were able to go back. During our wait, we met another gentlemen who had Lymphoma. He was telling us that MD Anderson has an entire floor for foreign sheiks, dignitaries, or other patients who come with cash to pay for their treatment. He said he was on Medicare. I was glad to hear that MD Anderson took Medicare, since Todd will have to go on it soon. Unfortunately for him, he needs an allogeneic transplant (where he needs someone else's bone marrow), when most Lymphoma patients need an autologous bone marrow transplant (where they receive their own cells back after the intensive chemotherapy) and in this case, Medicare will NOT pay for the transplant. He said he didn't want anyone suggesting a transplant anymore, when he knew he would never get it because he couldn't afford it. I hate this! It all comes down to insurance and money. As always, in the cancer community, we exchanged support offering prayers and encouragement to each other before parting ways.
We didn't get finished until about 9:00 p.m. that night. Although we were tired and discouraged, we were also excited to see the kids the next afternoon. Special thanks goes to Alan and Tiffany Page for using their frequent flyer miles to purchase round trip airfare for Hannah Lewis and Ellie to come to Houston. Abby, had teacher training and college work and couldn't get away, but we expect to see her when she comes to screen as the bone marrow donor.
Other thanks goes to my parents, Darrell and Donna Norrod, who have given sacrificially to help the kids and keep up our house and cars in our absence. Also, to our wonderful neighbors, Dan and Sharon Murray for mowing our grass back at home!
We also are grateful to friends, families, and even the strangers who have donated to Todd's Go Fund Me Fund, dropped off checks and mailed gift cards. We are blown away by everyone's generosity. Todd feels relieved to know we have the funds to pay our expenses here and the medical bills still pouring in. Our deepest thanks and love goes out to everyone!
References:
Chen, Yi-Bin, MD. 1997-2016. Medline Plus. Bone Marrow Aspirate. Web. Retrieved from: https://medlineplus.gov/ency/article/003658.htm
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