Today we have another appointment at the infusion clinic for Jeremy's IV prednisone. We are in our 5th week and have gone from every other day treatments to once a week.
The clinic that we go to is the most amazing place. It is part of Kaiser hospital and is specifically an infusion clinic for children. The staff there are wonderful. Jeremy's nurse, Elizabeth, is the same nurse every time. She is so great at what she does and from the first appointment, she made it so easy for him. She talks with him about soccer and movies and puts him at ease every time we are there. She and Jeremy have been trading box sets of TV shows--we got her interested in "Heroes" and she turned him on to "Firefly."
Elizabeth has recommended Jeremy for the Make a Wish Foundation, and Jeremy is so excited. He is going to wish for a trip to England to see Manchester United and Chelsea play a game! I thought that Make a Wish was only for terminally ill children, but it is actually for any child whose "normal" childhood activities have been disrupted by a life threatening condition. It is not guaranteed that he will be accepted, but there is pretty good chance.
One of the best things about these appointments is the one-on-one time that my husband and I get with Jeremy. Normally these appointments only take about 2 hours when he is just receiving prednisone (like today). But once a month he also receives cytoxan which takes about 6 hours total. This time that we have had to spend with him--just talking, watching movies together, eating lunch, etc., is invaluable. With all the craziness of life (we have two other children who are involved with sports, friends, etc. We both work and my husband coaches) we never would have taken this precious time with Jeremy had it not been for this disease. This has also forced us to realize that we have to make special time for each of our children, and doing that has enriched our lives so much.
On the days that Jeremy has his cytoxan treatments, I let him pick anywhere that he wants to eat lunch. He is so good about watching his sodium and fat intakes always--so we splurge a little on this day. For the first treatment we had burgers and fries, and last week we had College Ave. Burrito (anyone from the Bay Area might know how wonderful those burritos are!). I couldn't believe that I had actually never taken Jeremy to College Ave. Burrito before this!
So this afternoon we head off to another appointment. I have found that I look forward to seeing the staff and the other patients. Each has their own amazing story and each of them has been impacted by a disease in the same way that our family has. Though we really don't know each other all that well, we share a common bond (like so many people on this website) that only we can understand.
For anyone reading this--have a blessed day. Value everyone and everything in your life today and take a moment here and there to say a silent "thank you" for what you have. Life is good!