Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: October 19, 2002
Robert’s Update- 6.5 months post transplant
I think it is almost a month since I last wrote. I have not heard any complaints. In fact, the most common comment is, “When is Uncle Dan going to write again?” Well between school, acting as my campaign manager, our web-master designer, technical writer and back-up babysitter to kids and dogs, he just doesn’t have the time. Oh, I forgot he is also editor of his college newspaper and if it sounds like I am very proud of my little brother, you are absolutely right. He reminds me more of my dad everyday.
Remember, this is a Robert update, not an Uncle Dan update.
Robert and I had a scare two weeks ago; now that he doesn’t have a central line anymore, he has to have his blood drawn. They call this “sticking him” and I call it “stabbing him”. We went to our local community hospital for a blood draw. Their experts stuck him four times and were only able to get 2 cc’s of blood (barely anything). Later in the day they faxed me the results and the results said Robert had almost no platelets. We rushed up to UCSF and had Robert’s blood drawn again (on the first try). While waiting for the results, Dr. Horn and I talked about some pretty awful ways Robert’s platelets could have gotten that low.
When the results came back, Robert’s platelet level was within his normal range and it was a false alarm. Do you think we need a children’s hospital in our area?
Wednesday, Tina at UCSF took Robert’s blood. Tina is one of these special people that spend her life taking blood from children in the quickest, least painful way possible. I borrowed an expression from our priest and told Tina that when God takes her to heaven it will be on a Lear Jet.
It is pretty sad to have Robert have to have his blood taken. He tries to raise his shirt and offer his central line without realizing it is not there. Sticking him for blood is still better than taking the chance of an infection in a new central line or port.
Mark and I went to Mary Mott’s wedding last Saturday and we had a wonderful time. The Benders were there including Paris (Paris had a bone marrow transplant at the same time as Robert’s first one). I will just mention here that I got a fantastic picture of Paris and Mary and a pretty good picture of Paris with his parents. Mary was so pleased to see us and even toasted us at the wedding. It was a beautiful wedding and it was fun to meet all her family and her new husband’s family.
Robert has to have surgery next week, to have a tooth pulled and to have one filled. The good news is that his platelets and white blood count just hit the bottom of the normal level for the first time in two years. This is something to really celebrate.
Chatra, another person that had a bone marrow transplant at the same time as Robert’s first transplant, is in the hospital with pneumonia. She could use some strong prayers right now. Please help out on this; I know this is a pretty successful prayer group so please get working on it.
