Hayden’s Story

Site created on November 23, 2007

Our Story begins June 2006. Hayden is diganosed with Diabetes Insipitus. On a trip in June 2007 to VCU in Richmond for a check up for the DI. The Doctor accidently discoverd sludge in Hayden's Liver. We ended up in surgery to remove it. We went back in September for a ultrasound to make sure the sludge did not come back. Well, it did come back....

VCU told us they were sorry but had no answer for us. That is when Gene and I decided it was time for a second opinion. Thanks to our pediatrician, Dr. Robert Sullivan, we found a great Doctor in Cincinnati. Only after speaking with him for a few minutes we discoverd he had LCH. (Langerhans Cell Histiocytosis) Of course they did run all the tests to confirm this. All the symptoms were there. DI usually comes on before the LCH. Second, he had a rash on his head that would not respond to any medicine. Thirdly, he had the sludge in his liver. (the symptom were his organs get attacked). Fatigue and irritability are also symptoms.

The GI doctor told us his liver was in bad shape. Probably a transplant is in for him down the road along with a bone marrow transplant. Wow, alot of information to take in all in one day. But you know, Only God knows what is in store for Hayden. Gene and I really believe that God will heal Hayden and these transplants will not be necesary.

Now were going to see a Doctor at UVA for treatment. We have been told it is a year of chemotherapy. 9 out of 10 children respond great. Some children do not respond at all (That is not going to be Hayden's case) Most children can be completely healed after a year. It is something we will always have to keep an eye on because it can come back.


Newest Update

Journal entry by Laura Grosvenor

Hayden continues to improve and get his strength back.  He is rocking his PT!  Docs are keeping close eye on his liver numbers.  They are starting to stand still again...If they don’t improve on next set of labs next week they may schedule another biopsy.   We will see.  God is still carrying us so I am not going to worry about it.  I give it all to Him!! What a Mighty God we serve.  🙌🙌🙏🙏
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