06/06/2023
From Kimberlee, Will's sweet mom:
Towards the end of October 2022, we first noticed that 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. Our oldest son 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. Our oldest son Alexander passed away from b-cell lymphoma back in October 2016 so this news was very concerning. 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.
We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses, which include all the life-saving expenses that result from the diagnosis that would require a patient to be transplanted, such as medical therapies, treatments and travel costs. Please consider donating to COTA in honor of William.
We know this will be a challenging time for Will and all of us but are grateful for the path forward and opportunity to help him have a healthy life. We are thankful for the ongoing love and support of all our family and friends and will continue to update you all as we journey through this process.
Love and Hugs from William, Zachary, Shawn and Kimberlee Anderson
The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
