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1/24/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Chase was born August of 2011
He received his very first blood transfusion just hours old with a blood level of 6.4
Chase was immediately put in the NICU for the first 3 days of life with oxygen and close eyes on him, not knowing this rare blood disorder yet, we also found out Chase was born with a small hole in his heart and one kidney that was larger then the other, his thumbs were turned inward and so doctors knew something was going on, after months of testing and putting things together Chase was diagnosed with Diamond Black-Fan Anemia, which is extremely rare, 5 out of 7 million kids world wide are diagnosed.
Diamond–Blackfan anemia (DBA), also known as Blackfan-Diamond anemia, inherited pure red cell aplasia, and as inherited erythroblastopenia, is a congenital erythroid, aplasia that usually presents in infancy. Individuals with Diamond-Blackfan anemia may also have physical abnormalities of the face head, upper limbs, hands (mostly involving the thumbs), genitalia, urinary tract, and heart. Some affected individuals also have short stature, patients should continue to be followed because they are at increased risk for leukemia and cancer. Results are better for children younger than ten years of age if transplanted using an Human Leukocyte Antigen.
With this information as parents our hearts stopped, both Andy (dad) and myself got tested for the any sort of link to this, but nothing, with that information we new this is something that just started new with Chase, not knowing anything about this disorder and having to go to doctor appointments 3 days a week for the first few months of life was very stressful, we found out that Chase would require blood transfusions to survive.
Chase was such a trooper through all of this at such a young age, not knowing any different life than hospitals.
At the age of 2 Chase had thumb surgery to remove an extra bone in his thumb that made his thumb turn inward, we have not yet needing surgery for the other thumb yet but just keeping an eye on it.
Around the age of 3/4 years of life with requiring more blood transfusions we decided to give steroids a shot hoping they would work to help his cells to start working and making their own bone marrow, we had a little luck for little over a year with Chases blood holding its own, with this came along with nasty side affects of extreme weight gain and swelling, mood changes, sleep changes and having a harder time concentrating. Doctors decided to stop the steroids and see how his body would tolerate things on its own, with needing more transfusions we got the news that Chase would require a bone marrow transplant, which brings us to where we are today, Chase received his transplant on November 25th, a few weeks later we got more bad news that his body had rejected the transplant and we will require another one soon.
We are currently staying at the Ronald McDonald house in Minneapolis Minnesota, while we were in the hospital Chase was getting mail from our amazing friends and family and it sure made his day, so if anyone out there is interested in sending Chase a card just to say hello he would love it!!!
Ronald McDonald House
621 Oak St SE,
Minneapolis, MN 55414
The hospital address is:
University of Minnesota Amplatz Children's Hospital