On September 17th Christopher was feeling bad and so we went to the local doctor in Granby. He had broken blood vessels on his legs and blood blisters in his mouth. After we went to the Hospital for blood tests we went back to the doctor’s office and they made Christopher sit down carefully. His platelet count was one. Normally your platelet count is between 150 and 400. Dr. Lepke recommended we take Christopher down to Children’s hospital in the ambulance in case he developed a bleed on the way down. He did not have the ability to clot his blood. I was able to arrange for Cory Zeigler to be one of the medics on the ambulance and we took a ride to Denver. Once at the hospital the doctors went through many tests, including a bone marrow biopsy, and in the end they told us that Christopher has Idiopathic Acute Aplastic Anemia. His bone marrow was only working at 20%. There is no real reason for this to happen to Christopher it was just an abnormal immune response to an illness. His body overreacted to a foreign object, infection, in his body and attacked his bone marrow. About 10% of the cases spontaneously regenerate the bone marrow on their own, 75% of the cases can be treated and recover with immunotherapy. If immunotherapy does not work then a bone marrow transplant is the way to cure the disease and 95% of the people are cured with a BMT. They released Christopher on the 23rd of September and said we could go home and he could go to school but no contact sports and no contact with sick people. We went home on Wednesday, he went to a soccer game on Thursday and saw some of his friends and on Friday we drove to Eagle to spend the weekend with friends. His fever was low when we left GL but an hour after we arrived at Eagle his temp had spiked to 103.6. Kevin broke all speed records and got us to the Vail Valley Medical Center where he was isolated and then we took another ambulance ride back to Children’s and went back on the 7th floor, hematology/oncology, in the isolation wing this time. We have been there ever since the 25th of September. Once there they determined that Christopher had Mono and he suffered with a sore and swollen throat and high fevers for two weeks. He was recovering from that and finally eating again for about a week when they started talking about letting him out for a few days before they started treatment. He started spiking fevers again and one morning his fever was at 106.8 and he went into the PICU. He had a gallbladder infection, a blood infection and one additional infection. They treated him there for a week where he couldn’t even get out of bed with high fevers, chills and they had to put a drain in him for his gallbladder infection. They started him on steroids as part of his treatment and after a week of fighting he was released back to the 7th floor. He took another week to get strong again and last week they started him on the next step of his treatment, ATG. This is a horse serum that beats down the remaining immune system so that the bone marrow has a chance to recover and possibly come back on its own. He was in lots of pain from this for a week with aching joints and no relief. He was better for a day. His viral load went back up, a residual from his Mono infection, so they started him on Rituximab which attacks his B-cells so that the Mono virus cannot reproduce again in his body. This gave him the same symptoms as the ATG so he went back to being miserable. Because Christopher’s illness has not had a typical track they didn’t think the immunotherapy would work but they are tried it as it is less painful and invasive than a bone marrow transplant. In the mean time they prepped for a BMT at the same time they are treating Christopher with the immunotherapy. Luckily they are parallel paths. He also has a parallel disease called HLH that is also an auto-immune disease. He did immunotherapy for a month with intermittent bouts of pain and there was no increase in his bone marrow output. He went again to the PICU for another couple days and last week he had to have a surgery for a spinal tap because of a viral infection, they put in a permanent port for blood and chemo and they did an examination of his upper and lower intestine.
Christopher started his BMT prep ten days ago and as I am writing this he is getting his BMT infusion. The next few week or possibly months will be waiting for the bone marrow to engraft. This is a very scary time as he has no immune system and will be fighting off infections with nothing to fight with. Once the bone marrow takes he will be released to Brent’s Place in Denver. This is a “half way house” for transplant patients who don’t’ live nearby. He will be there for at least 100 days just in case he has any rejection symptoms.
Unfortunately this is Christopher’s senior year in high school and he is missing it. Even worse he was one weekend away from applying to college and now he will struggle finish and graduate with his class. He really wants to go to CSU. Christopher has had three trips outside of his room in three months. He has been in his room since September 25th. He was able to go outside and sit in the sunshine for a while. His life is very boring. Christopher was on the Varsity Basketball team and looking forward to a great season. He was hoping to go into engineering in college. Christopher has the biggest heart and worries more about how hard this has been on his family instead of himself. He has never stopped fighting to get himself better and is always polite saying please and thank you even when the doctors are poking and prodding him all day.
Christopher has been in the hospital for five months now and the cost is astronomical. Thankfully we have insurance but it does not cover everything. Thank you for your generosity.