|
Aaron Shelson 
Welcome to Aaron's Web Page.
Aaron is back home in Toronto (as of June 23) taking it easy this summer as he regains his stamina.
Journal
Tuesday, May 20, 2003 3:18 PM CDT DAY 75
We all woke up together as a family this Saturday morning and it was Aaron’s tenth birthday! We wished him a “Happy Birthday”, and he opened his presents, some of which Lorne had brought from friends and family back home.
Then I had to get ready and head over to the Fanconi anemia Regional Meeting, being held at the hospital. Lorne and I have previously attended two other regional meetings in Detroit and Cincinnati, and we also go to the Yearly Family Meeting now at Camp Sunshine. These meetings usually have good medical presentations, and give us the chance to talk to other families. Lorne was going to wait with the kids until 10:00 a.m. when Peg would come to play with them, so he could go to the conference too. Around lunchtime, Joan would join us and we would have a little party.
I found the meeting room and the meeting was well attended. As I expected, I had missed the introduction and the first presentation, but heard the presentation on bone marrow biopsies. At the break, I said hello to some of the family members I knew, including the Redekops from Alberta who are also hoping to come to Minneapolis for their daughters’ transplant. I grabbed some coffee and breakfast and got ready for the next presentation regarding endocrine issues. Happily, Lorne came in during this time. We stayed for the lecture on digestive issues, but decided to leave during the “Dealing with Chronic Illness and Bone Marrow Transplant” presentation since we needed to celebrate with Aaron and we had about 10 years of experience in this topic already.
Back at the apartment, Joan and Peg had brought Pizzas, Cake and Balloons – so that we were all set to party. As well, Lorne started making a Pad Thai stir-fry since Aaron was requesting Thai food for his birthday (one of his favourites). In the meantime, Peg’s husband Greg brought over their two dogs Gina and Oliver for Aaron to meet. Aaron, Sarah and Livia, Peg and myself went out to meet the dogs. When we went outside, Aaron didn’t pet the dogs to be safe, but he did enjoy meeting them. The dogs waited outside while we all went inside to have lunch and cake.
Everyone sang Happy Birthday to Aaron, who then blew out the candles. It was a wonderful moment to realize he had made it to ten years old, was doing so well and would have many more birthdays to come!
Aaron opened the thoughtful present from Peg and Joan and then it was time for Lorne and I to return to the conference. Greg and the dogs gave us a lift over even though it was close by so that we would not be late. We saw the presentation on Head and Neck Cancer. Next, we heard the presentations on Pre-Implantation Genetic Diagnosis and Sibling Bone Marrow Transplant by Dr. Wagner and then Unrelated Bone Marrow Transplant by Dr. MacMillan.
Subsequently, the family Panel was scheduled where the audience gets to ask families questions about those topics. Since Lorne and I had already gone through the process, we didn’t have questions, so we were going to leave at this point, especially since Joan had to get back home soon. However, we found to our surprise that we were ON the family panel. Lorne and I gamely stayed and answered questions with two other families.
We hurried back and relieved Joan with much apologies. That evening, the conference was continuing at the Science Museum of Minnesota in Downtown St. Paul where there would be a dinner and a presentation on the “Future of Stem Cell Therapies”. We would be able to see the exhibits at the Science Museum afterward. We thought the Science Museum would be a nice way for Aaron to spend his birthday and that the museum probably would not be that crowded in the evening. We checked with Dr. MacMillan whether it was all right to bring him and she agreed.
When we arrived at the Science Museum, we went to the private room reserved for the FA families. We said hello to the other families and we saw Amy Vangel who had her transplant about eight months before Aaron and had visited Aaron in the hospital. We were happy to see she was still doing well. The kids "Made DNA”, an activity arranged by Dr. Wagner and after that, the families went down to where an exhibit on Fanconi anemia will soon be displayed. The kids and I explored until dinnertime. After dinner and the presentation, we did go enjoy the impressive Viking exhibit which would be gone after that day. The kids had a ball.
It was a nice birthday, especially since we were all together.
The birthday binge continued Sunday with Lorne’s birthday. We sang Happy Birthday to him as he blew out his candles on his cupcakes and made a wish. He opened his present from us and the ones he had brought along from other family members. It was a nice celebration. Later, we walked over to the Museum of Natural History on campus, which fortunately was not crowded on a Sunday, and the kids had fun looking at all the displayed animals and other exhibits. We had Chinese food for dinner and Lorne and I rented a movie for the evening.
On Monday, the kids played together for most of the day and then we tried to go to the Como Zoo late in the afternoon. However, it turned out to be closed and we decided to return the next day a little earlier. Instead, I bought some wool for a new afghan, which I am going to make for Livia. (That’s right, I’m going to make one for Sarah too next. I guess I’m back into my hobby in a big way).
Tuesday morning we had clinic and we all went. The girls played in the waiting room while Lorne, Aaron and myself went to the back where he had bloodwork and was examined by Dr. MacMillan.
His blood counts were good with his white blood count at 7.9, his hemoglobin holding at 9.1 and his platelets at 219 (what a lovely number). His liver ALT was still high, so we did not restart the vorconizole, although his total bilirubin was in the normal range. His kidney creatinine was at 1.0, which was okay but would be better lower. Aaron has to work drinking more fluids.
In the last few days I noticed that not only were his eyebrows growing in darker and thicker, but also the hair on his head, while still extremely short, was growing in black now. This change in hair is the result of the medications and may be temporary or permanent.
Later in the day we tried the Como zoo again and got to see some of the animals before it closed. It’s a nice zoo where you can see the animals quite close up and we all enjoyed it. We decided we had to come back one more time to see the whole thing.
It’s just wonderful being able to do everything as a family again. I can't help but notice how much happier Aaron is since Lorne and the girls arrived.
UNTIL NEXT CLINIC
Our next clinic will be on May 27th at 10:30 a.m. and after the girls and Lorne leave. The only real concern now is monitoring his creatinine and watching for any other signs of trouble.
DRUGS TAKEN SINCE LAST CLINIC
Bactrim
Cyclosporin A
Magnesium
Nystatin
Read Journal History
Links:
http://fanconicanada.org Fanconi Canada
http://fanconi.org Fanconi Anemia Research Fund (U.S)
|
|
