Cincinnati Trip Recap

Ian & daddy dozing on the flight.

Ginger writes:

We are just getting our feet back under us after our trip to Cincinnati. It was a very long trip there and back, but Ian did great. We were delayed in Chicago for several hours, so our layover there was very long and we didn’t get settled into our hotel until 2:30 am and even then Ian was up throughout the night because of being overtired and not being in his own room, I think.

The next morning we were off to Cincinnati Children’s Hospital for our appointment with Dr. Filipovich. It was another long day, we were at the hospital for 5 hours. Dr. Filipovich really took time to talk with us and asked us a number of questions, in addition to the extensive medical history we had already given to the nurse. She said that she has been treating HLH and doing Bone Marrow Transplants for HLH patients for 35 years. She explained that HLH is a disease that causes a lot of inflammation in the body, and that she believes that this pre-existing inflammation that is smoldering in HLH patients is what causes the increased mortality rates (as high as 30%) for HLH patients who receive the Myeloablative Conditioning.

The drugs used with the Reduced Intensity Conditioning are different and do not seem to have the same effect on HLH patients. She stressed that she was talking specifically about HLH, and not Leukemia, that these results are peculiar to HLH alone. She also explained that Ian being in a stable remission and having a sibling donor who can donate marrow makes him an ideal candidate for the Reduced Intensity Conditioning.

She said that she would repeat some blood tests on Ian to look at immune function and also have these same tests done on Caid, to be sure that he was a good donor. They would expect Ian’s tests to be abnormal and Caid’s to be normal, since Ian has HLH and we hope that Caid does not. In order for the bone marrow transplant to cure Ian, his diseased immune system needs to be replaced by Caid’s healthy system. (CHOC had already run these tests and they have come back with normal function for Caid.)

I also hope that we can do these tests for Henry to give us clues about whether he might be affected by HLH or not. She also spoke well of Dr. Neudorf, the head of Bone Marrow Transplant at CHOC, who she had trained a number of years ago, and from the beginning, we liked that Dr. Neudorf had a professional relationship with her.

more blood!

Dr. Filipovich also asked if we would be willing to give some of Ian’s blood for their research on HLH, since he has HLH, but the mutation is not carried on any of the genes they currently know about.

Although it was a very tiring and long trip, I am so glad that we went because it did give me the peace of mind I wanted. I know that we are doing the right thing for Ian, no matter what comes, and I feel ready to sign the consents next week at CHOC.

Caid & Henry pose for a picture to send to Mom, Dad and Ian.

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