Happy Autumn!
I thought my last entry was long overdue! I can't believe it has been 5 months since I have written anything on this blog.
A lot has happened in those 5 months. I don't want to overwhelm with too many details. I think I will take it month by month and summarize the events that way.
In late April, we took our trip to Hawaii. It was a great vacation that we ALL enjoyed immensely. We swam, snorkeled, ate, drove, shopped, and generally relaxed. The only downfall was the 4 trips we took to the hospital for Katy's platelet and blood transfusions. The highlights of our trip included our hotel, snorkeling with wild dolphins, motorized hanggliding (Emily and Katy), and seeking out the best shrimp trucks. It was a vacation we will not soon forget. I will post a photo album of our trip on the blog.
We came home and I got busy with end of school stuff, Emily's physical therapy, and Katy's many appointments. I also planned a surprise party for Katy (in lieu of a graduation party). I compiled a book of letters from friends, family, teachers, medical personnel and others so Katy would have a better idea of how she has affected the world around her, and the impression she makes on so many people. We continued going to see Katy's doctors and getting infusions 2-3 days a week. During this time, Katy only received supportive care with no treatment. However, we did tell Dr. Afify that Katy was interested in talking to doctors at Huntsman Cancer Institute about adult medical trials. Like Primary Children's Hospital, Huntsman Cancer Institute (HCI) is on the University of Utah Campus.
The surprise party was a success. Katy was genuinely surprised and appreciated all the effort put into the book. Again, I will post an album of pictures here.
In June, we got news that Katy's AML was beginning to grow a bit faster. It was still low, but we decided to meet with Dr. Shami at HCI. We were surprised to learn that the bone marrow team at Huntsman was willing to consider a bone marrow transplant for Katy if we could lessen her leukemia with another round of chemo. After spending 3 months recovering from her last hospital stay, which had many complications, and was her 3rd chemo round for AML, Katy decided to go for it. She was admitted to HCI for 5 days to undergo this chemo (her 4th round).
Also, in June, I got word from my family that I might want to fly to California to visit my step-father, Brent. He was also battling a different kind of cancer, and his health was becoming more fragile. I decided to fly Emily and I out, on very short notice, over Father's Day weekend. It was so nice to see Brent, my Mom, Deb, Amanda, etc. We had a nice, albeit quick, trip. Katy, due to her low blood counts could not travel. The following week, Brent chose to stop treatment because his chest tumor was beginning to grow again.
In late June/July, we received news that Katy did not make it to bone marrow transplant. They called off the transplant, but the team recommended, and Emily agreed, to harvest Emily's stem cells regardless, in order to freeze them, and hasten the transplant process in case Katy makes it to transplant in the future. Katy decided to try an antibody therapy that the FDA only approves in last resort AML cases, called Mylotarg. She started this treatment in July. On July 17, I had Katy up at Huntsman receiving the all day treatment, while Emily was in the same infusion room having her bone marrow harvested. Craziness to say the least.
Around July 24-25 Katy started getting a cold. The night of July 27, Katy spiked a fever and we spent the night in the ER getting her admitted to Huntsman. She received a bone marrow aspirate on Friday, July 28, as planned. Katy got diagnosed with pneumonia which they started treating with antibiotics. On Sunday morning, July 30, Brent died at home in California. We also received the news that Katy's leukemia was up to 40% as calculated by the Minimal Residual Disease (MRD) test of her bone marrow. The Mylotarg had done nothing. Saying it was a rough day is an understatement.
Katy got released from the hospital, and we met with her medical team multiple times over the next week. Katy decided to start a treatment called Vidaza. Vidaza is used in older AML patients that cannot sustain the more difficult chemotherapies. It is considered a maintenance drug to extend life, and improve quality of life, as it helps to sustain patients' blood counts, resulting in fewer transfusions. It does work through a different mechanism than other AML chemotherapies, and we were told that there is an extremely small chance it could get Katy to transplant, but it is very unlikely at this point. Also, Vidaza takes 2-4 monthly rounds to see the full effects from the treatment.
Katy started the treatment immediately. She flew to California with me for Brent's Memorial. We also went to see "The Book of Mormon" here in SLC. Emily performed in her musical "Once on This Island", and all four of us went to Wyoming to see the eclipse. Jim's brother, KC, and our sister-in-law Trudy, were our wonderful hosts in their beautiful home, which was in the totality zone. (I'll post pictures of this as well). Emily started her freshman year in high school.
After the first treatment of Vidaza, Katy went 6 days without a platelet transfusion, which hadn't happened in months. She went through her second round of treatment with fewer side effects. And her leukemia counts may be going down.
There are 4 ways to measure her leukemia load. It includes 2 different counting tests, using 2 different samples, either blood or her bone marrow. In one test the doctor counts the percentage of leukemia cells he/she can see under a microscope. The second test is called Minimal Residual Disease (MRD) and uses a machine to count the percentage of leukemia found in 10,000 cells.
Last Thursday, Dr. Shami told us he counted only 2% of blasts, under the microscope, from a blood sample of Katy's. This was down from 11% the week before, and 15% the week before that. This has given us a cautionary hope, that perhaps, Katy may still make it to bone marrow transplant. We can never count Katy out. She will have another bone marrow aspirate done at the end of next week, and we will receive the MRD results the first week of October.
Meanwhile, Katy has been feeling better, and more energetic, than I have seen her in a while. She is pursuing her GED, working on art, seeing more of friends, and socializing with us more. So for now, things are looking up and life is getting a somewhat normal rhythm to it again. How long it lasts is anyone's guess. But I will take it for now.
Last Saturday night, the 4 of us went to a lantern festival. We had a nice time and made wishes as we let the lanterns go. I'll post pictures of that as well. Also, Jim's coworker, started a Pacificorp team for the fundraising event, Light the Night. This event supports the Leukemia and Lymphoma Society. We are participating and fundraising for the team. Follow the link to our fundraising page:
http://pages.lightthenight.org/ut/saltlake17/JDoak
Any donation amount will be appreciated!
Thank you to everyone for your continued support. Thank you so much to our neighbors, for the continued support in meals, every other Monday. It always seems to come on the most needed day.
Love to you all,
Christina
