Supporting Sophia

Our sweet girl, Sophia, will be 2 on January 19. When she was born her blood counts were abnormal. She had an elevated white blood count and her platelets were on the lower end. After 2 days in the mother/baby ward of the hospital her parents were told that she needed to be transferred and admitted to a hospital in Downtown Chicago to receive a blood transfusion for her low platelet counts and find out why her blood was abnormal. At that point something that was unknown about Sophia, that ended up being a huge part of her story, was that she had Trisomy 21, otherwise known as Down Syndrome. Upon arrival at Rush University Medical a karyotype test was performed, after a long weekend wait her results came in that she had Down Syndrome. This was celebrated among her doctors because the reason Sophia's blood was abnormal was because she was also diagnosed with Transient Myeloproliferative Disorder (TMD). Babies with Down Syndrome can be born with this blood disorder and it can either go away on its own (transient) or it requires treatment of a small dosage of chemotherapy for 3-10 days. Babies without Down Syndrome born with TMD are a different story and require a much harder treatment, which is why Sophia's Down Syndrome was celebrated (among other reasons!). Sophia was on the border of whether she would need treatment intervention so they gave her 2 days and she started developing other symptoms and was declining in health so they intervened with treatment. She received 5 days of treatment and her blood tests were normal.

Since then, Sophia has had her blood drawn every 3 months because with having TMD and Down Syndrome, she has an increased risk of developing Leukemia before the age 4. In September her blood test came back normal except for having low platelets. Her doctor suggested waiting a month to repeat the labs. Her follow up blood test still resulted in low platelets but also other numbers came back abnormal, as well as the shape of her cells were abnormal. It was then that her doctor required a bone marrow test be done to see what the genetics in her marrow would tell us. The results of the bone marrow test confirmed that Sophia was on the road to developing Myeloid Leukemia of Down Syndrome. Currently she is in the Myelodysplastic Syndrome stage, meaning no leukemia cells have been found because it was caught in the pre-leukemia stage.

Sophia will begin chemotherapy treatment at Rush University Medical starting Friday, November 17th, 2023. She will receive 6 cycles of chemotherapy. One cycle consists of 1 week of chemotherapy followed by a 2-4 week hospital stay because her blood counts will drop very low making her immune system very vulnerable to illness and infection. Once her blood counts rise we will be able to go home for a week of reprieve before starting the next cycle. The chemotherapy treatments will consist of 2 spinal injections, 1 oral medicine, and 3 treatments through her catheter that will be placed at the beginning of treatment. The survivability rate of this diagnosis is 90% and Sophia has 2 things going for her: 1. That they caught it early. 2. That she is aged 0-2 because younger children had even better outcomes. While the outcome seems hopeful and good, her doctor suspects a rocky road ahead with treatment especially because of Sophia's underlying condition, Epilepsy.

Nicole is a stay at home mom who intends on being with Sophia every step of the way. Daniel had just started training to work with Southwest Airlines, after a week of training he came home because of the testing that Sophia needed to have done. Southwest has been extremely gracious and accommodating to Daniel, allowing him to be home with his family while providing insurance coverage. They aren't sure how long the accommodations will be able to last and Daniel would like to be with them for this fight especially with his job consisting of lots of travel where he is exposed to a lot of people in airports and planes where he could bring something home when he would be able to see Sophia.

Let's provide blessings for this amazing family during this very challenging time; by either making a donation or sharing this on your social media page. Thank you for anything that you are able to give, but most importantly, thank you for your prayers!