Wade’s Fight For A Cure

Haley here, proud mother of Wade! Our little man is 2, turning 3 this October. He is such a sweet boy with a side of sass! His personality is BIG, a fire we love, and one he will need in the upcoming months.

We have shared some of Wades story over the last few years, some details however we keep pretty quiet about, as it can be quite graphic and difficult to watch. He has an extremely rare platelet function disorder called Glanzmann Thrombasthenia (GT). Essentially his platelets lack a protein that allows them to clot properly, so once bleeding starts it is very difficult to get it to stop. Additionally he bruises quite easily. His little body is typically riddled with bruises from normal daily activities. We have come accustomed to taking preventative measures in an effort to avoid bleeding episodes, obsessively checking humidity levels both indoors and outdoors along with applying Vaseline every few hours in his nose to keep it moisturized.

Wade has been in and out of the emergency room his whole life. Mostly for nose bleeds, but also mouth and joint bleeds. Treatment and management options are slim and always require IV placement for necessary medications. Bone marrow transplant has always been in the back of our minds as a possible option for him. Recently his bleeding has become more severe. We were 6 hours from OHSU when he started vomiting massive amounts of blood. Local emergency rooms turned us away because they don’t carry the medication he needs. By the time we got him to the hospital we were admitted, where he needed emergency surgery along with several blood products. After an 8 day stay and one night in PICU we went home only to be re admitted two weeks later for another nose bleed. Frequent hospital stays, home meds through IV and home health visits have become the ‘norm’ for our family.

As discussion has continued with Wades team of doctors it has become clear that bone marrow transplant is the path for him. His chance at a cure and to lead a normal life! His doctors have been working hard finding his perfect match and the prospects so far are great! The last several months have been hard, but these next few months will be even harder. Wade is on track to be admitted to the hospital sometime this October/November. He will have to undergo a conditioning treatment which includes chemotherapy to ‘clear out’ all his own marrow in preparation of his new cells. In total we will be in the hospital for minimum 5 weeks up to 2 months if no complications arise, and in total a year of precautionary measures before he is able to do normal activities again. He will be on 6-7 medications at home and severely immuno compromised until he is able to wean off all medication.

I will be taking a leave of absence from work to be bedside with him as well as his full time caregiver when we return home. Any contributions made will be going towards household bills along with the substantial medical bills for Wades treatment we incur. We are grateful to those sharing our story with friends and family to help us in reaching our goal. We sincerely appreciate the support from everyone, and thank you for helping our family during this difficult time.