We were told we would be doing experimental treatment either in Philadelphia, Denver, or here in Salt Lake City. We were so grateful when the study we needed opened up here at Primary Children's Hospital. The study is called Blinatumomab. It is so cute to hear little Ethan say it! The drug pulls your t-cells (which are immune fighting cells) over to the cancer cells like a magnet, so that the t-cells can destroy the cancer cells. This treatment works in about 50% of those pediatric patients who participated in phase 1 of the study. We were the 4th participant in the US and Europe who participated in phase 2 of the study. The first at Primary Children's. It has some crazy side effects, like seizures and neurological issues. We were blessed that the only side effects we dealt with was a fever for not even 24 hours. He did so well! We were in the hospital for both Ethan's birthday and Thanksgiving, but it was a small price to pay for the treatment he was receiving, and the hospital made both occasions special. The nurses let Ethan spray them with silly string at midnight on his birthday (he was still awake), and gave him some amazing gifts! We took the kids up to celebrate on his Birthday, as well as grandparents, and my good friend Shersten. It was a lot of fun, and turned out really great. An organization called Icing Smiles made Ethan an amazing Mickey Mouse cake, and we had a special cancer mom start a facebook page for others to wish Ethan a Happy Birthday. We got some really great videos and posts. We felt so grateful and blessed!
Two weeks into treatment, Ethan did a bone marrow aspirate. The final results were .06 leukemia cells. This was AMAZING!!! Two more weeks later, as he finished treatment, he was declared in remission. This was truly a miracle to our family, and for little Ethan! I could not sing enough praises for this drug. Ethan was able to regain his energy, and acted like a normal little boy. We have not seen this for over 2 years. It was simply a miracle!
Now we are preparing for his bone marrow transplant. He has completed many tests in the last couple of weeks, and has done 3 days of cranial radiation. On Monday, he will be admitted to the hospital, and will do 4 days of total body irradiation twice a day. Friday and Saturday he will do chemo. Sunday will be truly a "day of rest" for him, and then Monday, the 13th, he will receive his bone marrow transplant. His little almost 20 month old brother will be his donor. Blake will go up early that morning do draw bone marrow from his little body. This will require approximately 100 punctures to his hip bones. Blake will recover, they will screen his bone marrow, and then we can head up to Ethan's room. Early that afternoon, Ethan will receive Blake's marrow. They throw a little "Birthday" party for Ethan, and give both Blake and Ethan gifts. We are excited but nervous at the same time. It is hard to see little Ethan have to get sick again. It is hard to have to put my sweet little Blake through so much pain on his brother's behalf. All in all, I am so grateful that we have this opportunity. That Ethan is in remission. That Blake is a match. That we even have the chance to do this procedure. It is all truly a miracle! I am so grateful to my Heavenly Father for these answered prayers!
Throughout this last month, we have been so blessed. We have had many gifts and donations end up on our doorstep anonymously. A sweet friend in Arizona who lost a child to cancer, threw a party in her daughters memory for Ethan where people donated funds. This was a great surprise. I had a sweet friend bring us walkie talkie's so that when our other kids are sick, they can stay in the basement and call is if needed so they aren't around Ethan to expose him to illnesses. I had a great-aunt send us an amazing donation in the mail as part of their Christmas Jars tradition. We were able to go on the Polar Express thanks to the Mascot Miracle Foundation where we met Santa and received presents. It was truly a magical night. We were able to attend The Piano Guys concert with VIP tickets. So many well wishes, and prayers and concern for our family. It has truly been an amazing journey!
Here are a few fun pictures from over the last few months.
|The Piano Guys through a couple of wonderful friends, gave us VIP tickets to their concert. It was SO much fun! Ethan loved it! We got to meet them after, but it was after midnight, so Ethan was asleep.|
|Ethan getting his EKG|
|Getting ready to be sedated for his first day of cranial radiation.|
|Ethan's little mask he wears for his radiation.|