Last Thursday John had his monthly visit to the oncology clinic to check his blood counts, urine, physical…all that good stuff. His numbers were perfect..we love to hear that! We are watching closely for any side effects of the DFMO or any other changes that could signal a concern. Once again he handled the blood draw like a champ, but the office visit went down hill fast and furiously the second a flu shot was suggested by Dr. Rawwas. The whole problem was that John didn’t have a heads up on the situation. He likes to feel in control of at least a little bit. The tears started to pour out of those big brown eyes and panic pleas out of his mouth. John then got up on the exam table and Dr. Rawwas brought over a box of tissue for him. He jerked 2 tissues out of there with such force I’m sure you could hear the scratch all the way down the hall! We got through the physical exam, discussed the DFMO trial that is officially up and running now at Children’s, signed the consent for a 2nd time and talked about scans. Scans….ugh….I think the first week in November. John needs to have clean scans to begin cycle 4 of the DFMO. The good news is that there won’t be anymore bone marrow biopsies unless there is a concern. Concerns by his doctors not his mother. I always have concerns.
Our appointments were running a little over and we were in a time crunch. John, Jon and I were to be in St.Paul for the Delicious Wishes event, a fundraiser for Make a Wish. John and I dashed out to the truck. I had him change his clothes in the parking lot, which he thought was crazy and took off only to hit the traffic. We only ended up a little late. John was invited to help a chef that would be cooking appetizers and to share his Make a Wish experience with the guests as they walked by. There were about 6 kids there total at different stations doing this. At first he was very shy, but the chefs that worked with him were very kind and patient. John actually did better when Jon and I weren’t near him. This worked great for me as it provided the opportunity to taste delicious food and sip a little wine. (I’m sure they were all low fat!).It was a long day for John between physical therapy, a doctor appointment the traumatic flu shot, and having to be so polite all those hours during the Delicious Wishes event.
I forgot to mention that Wednesday was John’s last day of the fall skating clinic. He has been itching to wear his very special signed Mikko Koivu jersey. Dad wasn’t home to tell us no…so he wore it.Hockey will start up again in a few weeks. It is great exercise for his little tight ankles.
The busy week caught up with John and he was exhausted. Saturday morning he slept in really late. Finally at about 10:50 I went in and opened his curtains to try and stir him a bit. I was thinking that he was surely going to wake up sick…he never sleeps like that! A little after 11:00 I heard him and the next thing I know there he is standing in front of me….dressed, hair combed and bed made. He just needed the sleep.
Hockey try-outs continue for Jeffrey. Tomorrow is the final day and that will be a relief!
Michael is planning on visiting Madison later this week with a few friends. Tonight he said, “Can you believe I will be away at college in 2 years?” No, I can’t! Boo- Hoo! I continue to suggest Inver Grove Community college as an option.
Happy week to all!
Love, Hope & Blessings,