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 finally got to see his favorite GI doctor in person today.  Dr. Balistreri!   It was the first time since before the transplant.  He was super excited to see him.  He gave us the pic of Hayden’s old liver.  Just wow! It is just amazing to know that he has a fresh new liver now.  What a difference. So so thankful.  Doc was so pleased at how things are going. He has given his blessing for us to go home on Friday.  We will have a six week break before we have to come back for next check up.  We are able to continue the weekly labs back home so they can continue to monitor him. 
It has really been an adventure and journey the last few months.  We have enjoyed our time in Cincy but we are ready to go back home.  God has been so good and seen us through every step of the way.  I give Him all the glory.  
I want to thank each one also for all the prayers,  support and love you have given our family. There is power in prayer and we have seen it first hand.  So many people donated money to help us with the living expenses in Cincinnati. I thank each one of you.  People we didn’t even know donated.  It was very humbling to know so many people care.   It helped out family immensely.  So many cards and care packages were sent as well. It all brought a smile to Hayden’s face and helped cheer him up.  On behalf of my family we thank you all for your generosity and love.  I hope God will bless each one in a special way. 

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