When Henry was about 2 months old we noticed he had a sort of Diaper Rash that would not go away. We tried different creams, consulted the Doctors who referred us to a Dermatologist. No one could figure the rash out and eventually a Biopsy of a small portion of the rash was taken and sent to a Lab in California. A short time later the results came back diagnosing Henry with a rare Disease called Langerhans Cell Hystiocytosis, LGH for Short. Feel free to Google it if you want to learn more. Although it technically is not Cancer, nor Leukemia, The easiest way to explain it is that it is an auto amune disease similar to Cancer or Leukemia and treated similarly with Chemotherapy and Stereoids. Like I said if that does not satisfy your curiosity feel free to look up LCH on your own.
Shortly after Diagnosis Henry became ill and had to be Hospitalized in Alaska. Things got worse and about 5 days later he had to be airlifted to Seattle Children's Hospital. The Doctors in Seattle specialized in rare Cancers and provided Henry much better treatment and after a few weeks he was stable and eventually was released to out-patient treatment. He had to stay in Seattle and even though we had appointments and treatments about every other day he was able to stay with us at the Ronald McDonald House.
He was put on Chemotherapy treatment and things seemed to get better. Just before Thanksgiving we were released to go home to Alaska to continue with at least a year of home based Chemo Treatment with Doctors in Alaska taking over and overseeing. Unfortunately for whatever reasons Henry's health did not cooperate and Christmas Eve; Lisa, Henry, and Elizabeth flew back to Seattle. Bone marrow tests revealed the LCH had progressed and was in his bone marrow. Joel flew down on New Years Eve and joined everyone in Seattle. Since then Henry has seemed to progress well and is doing better than when he arrived. Every day has its challenges and seems to be different. Some times Henry is as happy as can be and other times he is in a great deal of pain.
Shortly after Diagnosis Henry became ill and had to be Hospitalized in Alaska. Things got worse and about 5 days later he had to be airlifted to Seattle Children's Hospital. The Doctors in Seattle specialized in rare Cancers and provided Henry much better treatment and after a few weeks he was stable and eventually was released to out-patient treatment. He had to stay in Seattle and even though we had appointments and treatments about every other day he was able to stay with us at the Ronald McDonald House.
He was put on Chemotherapy treatment and things seemed to get better. Just before Thanksgiving we were released to go home to Alaska to continue with at least a year of home based Chemo Treatment with Doctors in Alaska taking over and overseeing. Unfortunately for whatever reasons Henry's health did not cooperate and Christmas Eve; Lisa, Henry, and Elizabeth flew back to Seattle. Bone marrow tests revealed the LCH had progressed and was in his bone marrow. Joel flew down on New Years Eve and joined everyone in Seattle. Since then Henry has seemed to progress well and is doing better than when he arrived. Every day has its challenges and seems to be different. Some times Henry is as happy as can be and other times he is in a great deal of pain.
That was very cut and dry but it gives the basic update where we are at now. I will try and post as things change and add pictures as I can.
Some of the pictures attached were taken just before Thanksgiving.
We were sent a card from a Family Friend which read:
"Life is not about waiting for the storms to pass, It's about learning to dance in the rain"
I wanted to say Thank You. This simple saying has helped me keep perspective on numerous occasions.
