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Tieryen was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) in September 2014. HLH is a rare and life threatening condition that affects the immune system. It is a 1 in 1.2 million occurance. There are 2 forms of HLH. Primary or Familial in which patients are born with a genetic defect. The other is secondary in which the patient has a trigger that sets it in motion. We believe Tieryen has the secondary form, although we have not been able to determine what the trigger was. The treatment for HLH is chemotherapy and steroids and in many cases, bone marrow transplant. She has responded well to treatment and it looks like we will be able to avoid transplant.
Tieryen came very close to death because HLH is so rare and so difficult to diagnose. Her organs were affected in the early stages and many specialists worked to figure out what was wrong with her. HLH means her immune system was overstimulated and it destroys healthy tissue and organs if left untreated. Tieryen endured 8 weeks of chemotherapy and steroids and she also had to have intrathecal chemotherapy because the disease also affected her central nervous system. Intrathecal chemo is medication injected directly into the spinal fluid by way of a spinal tap. It was a very difficult procedure to recover from, and she had a total of 6 spinal taps in 5 weeks.
We flew to Cincinnati Children's Hospital to consult with the top HLH specialists in the nation. The results of that trip and consultations with our Hematologist suggest that her odds are good to be able to continue to recover without the risky bone marrow transplant procedure. Without that, she will never be considered "cured" but she can remain in "non-active" status indefinitely.
We are asking for financial help to offset the mounting bills associated with this unexpected situation. We are seeing the bills roll in from the trips to the ER, hospital stay, chemo treatments, lab work etc. We are lucky enough to have good insurance, but now we have started a new year and the deductibles, and expenses have re-set again. I am grateful for so many friends and family offering to help and this page is meant to simplify their process.
Here is a link to explain what HLH is and what this 13 year old girl has been facing.
http://www.cincinnatichildrens.org/service/h/hlh/about/
Tieryen came very close to death because HLH is so rare and so difficult to diagnose. Her organs were affected in the early stages and many specialists worked to figure out what was wrong with her. HLH means her immune system was overstimulated and it destroys healthy tissue and organs if left untreated. Tieryen endured 8 weeks of chemotherapy and steroids and she also had to have intrathecal chemotherapy because the disease also affected her central nervous system. Intrathecal chemo is medication injected directly into the spinal fluid by way of a spinal tap. It was a very difficult procedure to recover from, and she had a total of 6 spinal taps in 5 weeks.
We flew to Cincinnati Children's Hospital to consult with the top HLH specialists in the nation. The results of that trip and consultations with our Hematologist suggest that her odds are good to be able to continue to recover without the risky bone marrow transplant procedure. Without that, she will never be considered "cured" but she can remain in "non-active" status indefinitely.
We are asking for financial help to offset the mounting bills associated with this unexpected situation. We are seeing the bills roll in from the trips to the ER, hospital stay, chemo treatments, lab work etc. We are lucky enough to have good insurance, but now we have started a new year and the deductibles, and expenses have re-set again. I am grateful for so many friends and family offering to help and this page is meant to simplify their process.
Here is a link to explain what HLH is and what this 13 year old girl has been facing.
http://www.cincinnatichildrens.org/service/h/hlh/about/