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Johnnys page Welcome to Johnny's page. Johnny was diagnosed with acute myelogenous leukemia on May 18, 2002 and received a bone marrow transplant on August 13,2002 at Duke University Hospital.
Journal
Tuesday, August 8, 2006 5:06 PM CDT I can't believe how long it has been since I last updated.....Karen I hope you are happy!
The past year medically has been pretty uneventful. We eventually saw a Pediatric Pulminologist because Johnny was having so many upper respiratory infections/pneumonia and Dr Temez was great. He changed all of the medicine Johnny was on and after about 9 months he was all straightened out. Seventh and Eighth grade he missed 50-80 days of school due to different illnesses. Last year he was only out 5 days. Now I'm sure you realize Johnny liked 7th and 8th grade better. What is even better than that....since last September he is currently off ALL daily medication.
We went to Duke on July 24 for Johnny's FOUR YEAR Post transplant visit. It was very hard to go back and remember where we were a few years ago and it makes you realize that there is not one thing you can control to keep you out of there for good. Seeing all of the bald kids and their parents with that devestated look on their faces is so sad. And not fair. Any child does not deserve to go through what these kids go through.
We went up to 5200 to see our nurses and were sad to see so many gone. It is completely understandable to me. I know I could not work there day after day without falling apart. Thank God there are others waiting to take their place. The nurses we had were incredible people.
Yesterday I received the results from Johnny's visit.....100% female donor cells. Hooray!!!!!! All other labs and tests were in range. It does not get any better than this.
Over the summer Johnny attended (thanks to Auntie Debi) the National Young Leaders Conference in Washington DC. John and I were so proud he was nominated. Johnny had a great time and met a lot of kids from all over the country. I think it really gave him a lot to think about.
Cameron however has not had a good summer. On June 5th, two days before school ended, he broke his left clavicle so bad that the doctor was thinking about putting a plate in. He went to a friends and went on the trampoline with more than one person which is exactly what I told him not to do. Well you know how I tease both boys all the time sooooo I told the ER nurse he fell off the toilet. She thankfully had a great sense of humor and went along with me. Soon you could hear throughout the ER "Cameron fell off the potty" over and over. It was a great punishment.
That unfortunately does not complete Cameron's bad luck. This past weekend on August 5th (exactly two months from his last ER visit) Cameron broke his right clavicle on his motorcycle. This time I felt so bad I did not even tease him. He was getting ready to start a new race series and now has to wait to heal again.
John and I are doing well. This past January I was promoted to Postmaster. Finally. Since April John has stopped commuting to Massachusetts and now works only in Virgina. Most importantly Lacey is fantastic. She is definitely a princess.
I will try to do better on the updates but am glad to say I have nothing to update!
Take care.
Babette
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Hospital Information: HOME SWEET HOME
PO BOX 1031
MONETA VA 24121
540-721-1067
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