We have shared our story on COTA but we would like to share more about our family and our background.
Shawn and I were married on April 9, 1997. After 8 years of infertility and miscarriage our oldest child Alexander was born on April 5, 2005, just 4 days shy of our 8th anniversary. Zachary was born December 2, 2007 and William was born June 26, 2012.
In October of 2016 Alex, our then 11 year old, became ill; His main symptoms started around October 3rd, 2016, he was admitted to Utah Valley Hospital on October 10th, 2016 by the PA at our family medical practice, after a week of headaches and throwing up, for dehydration. However I and the doctor at the hospital suspected something more. They did a CT scan and found masses in his brain. We were Life Flighted to Primaries Childrens Hospital, do to Alex becoming non responsive. We were in the PICU for several days with them running lots of tests. He was finally diagnosed with High Grade B Cell Lymphoma (Stage 4 since it was in his brain). After 10 days in the hospital we got to come home for a week (with a trip to the clinic and another MRI thrown in).
Thursday October 27th, 2016 Shawn took Alex up for what should have been his first full chemo treatment, he was suppose to be in the hospital for about a week so we were going to trade off since we had two younger boys at home. Alex had started throwing up after arriving at the hospital and by 4:00 pm had become non-responsive and was rushed down for another MRI and then to the PICU. I hurried to the hospital to be with Alex and Shawn by the time I arrived they had put a “bolt” in his head to monitor the pressure in his brain. We were told if it went above the number 20 it was bad. They got us one of the sleep rooms and I sent Shawn to rest since he had been with Alex all day. By 11:30 the pressure on the monitor was soaring above 50 repeatedly. The doctor told me that if it didn’t stay down we would lose him. After having one of the nurses wake Shawn we stood at his bedside while anxiously watching the doctors and nurses try to keep his pressure down. They also hooked him up to a EKG, his pressure continued to soar and went above 90. The morning of October 28th, 2016 (and also my birthday) they informed us that, Alex’s brain had probably herniated and there was nothing more they could do for him. It was time for us to gather our family and to let them know when we were ready to remove the breathing tube and that he probably wouldn’t take a breath on his own. After all the local family had been in (including his two little brothers). We told them to take out the breathing tube. My sweet Alex did not pass right away, and held out so that he didn’t die on my birthday. He took his last breath about 5:10 am on Saturday October 29th, 2016.
In 2018 after 17 years of living in Payson, Utah we decided we needed a fresh start and moved to Goodyear, Arizona.
During COVID we realized that William was struggling with schooling so I started homeschooling him. In 2022 we were well into our routine with Will homeschooling and Zachary as a Freshman in High School, when at the end of October we noticed William had some petechiae (small red dots) in his eyes.
As we looked closer, we noticed more on his body and that he also had a fair amount of bruising on his arms and legs.
Alex had experienced something similar when he was a year old, so we had our suspicions that something was wrong. We quickly met with his doctor, and she confirmed our suspicions, that it was probably “Immune Thrombocytopenia” or ITP. (In ITP, your blood does not clot as it should, because you have a low platelet count.) She ordered up some bloodwork to confirm and called us back the next day to send Will to the emergency room. His platelet count was so low that if he had any kind of bleeding it could be serious.
We ran off to Phoenix Children’s Hospital where they re-confirmed the ITP diagnosis and sent us home with specific instructions to come back if he had a bleed and what things to watch out for. We also had our first appointment with the Cancer Care and Blood Disorder Clinic the following Monday where they further educated us on ITP and things to watch out for. Since he seemed to be healthy otherwise, they scheduled weekly blood tests to continue monitoring him as well as our first treatment options.
Several Emergency Room visits, hospital stays, treatment plans and countless visits in the CCBD clinic later they diagnosed Will’s ITP as “treatment resistant”. They ordered genetic testing as well as shared some ideas for what his treatment might be once the genetic testing came back. In February 2023 we received the results to find out that he has RASGRP1 which is the genetic marker for Epstein Barr Virus (EBV) and b-cell lymphoma. This result and our family history spurred the doctors into consulting with the auto immune specialist at Phoenix Children’s and soon we were talking about a Bone Marrow Transplant (BMT/Stem Cell). A bone marrow transplant, also called a stem cell transplant, is a procedure that infuses healthy blood-forming stem cells into your body to replace bone marrow that’s not producing enough healthy blood cells.
On April 17th we met with the auto immune specialist/BMT doctor for a consultation and decided that the transplant is the way to go. So now Will is starting his transplant journey. This will be a year-plus long journey that will include a 6-8 week stay in the hospital for Will while he undergoes his transplant. During this time William will have to undergo Chemotherapy to eliminate his flawed immune system so that when the new cells are transplanted, they will have a blank space to grow and fully function.