Friday, May 7, 2010
Day +401: Milestones
It's day +401 for Max...just passed the day +400 milestone! He continues to do wonderfully. We have had a busy week, full of milestones so, I wanted to share them with all of you loyal and loving supporters.
Monday evening, Max, Alex, my brother Patrick and I got to attend the Reds game with Matt's company's tickets. We had a fabulous time! The seats were in the front row of the second level so they had a perfect view of the field and it was an absolutely beautiful evening. We also got free food and soft drinks with the tickets so, we all enjoyed some good ballpark munchies. Overall, it was awesome. Just so much fun to be able to go to a ball game and enjoy a perfect spring evening together. Thanks DJJ! Definitely a milestone passed to be able to go to a game, just because we can, without major worries.
I wanted to share the Reds game with you all because it was so enjoyable but, I am really writing today to tell you about a major milestone that we passed this week. On Wednesday morning, Max returned to school for a few hours! I took him and stayed with him the whole time as he asked me to and the teacher and counselor up at school agreed that it was a good idea the first few times. He LOVED being back! I don't think the smile ever left his face. He got quite the celebrity treatment from the class and really the entire school. He was surrounded on the playground and reconnected with a lot of kids that he knew from Kindergarten and 1st grade but, hasn't seen in over 18 months! Overall, he really, really enjoyed being back. We are going to keep his visits going for several mornings this month for about 2 1/2 hours each. He is already planning on going back on Monday, per his request, and Wednesday next week. I'm planning to stay with him again on Monday and then hopefully lessen the amount of time I am there each time after that until he can do it without me at all this month. I think we ALL feel better that I am there initially. I could tell that his teacher was a bit nervous and the other teachers and counselor as well. I think we all need some re-adjustment time!
As we talked about school on Tuesday evening, I told Max that he should pick out the clothes he wanted to wear for his big first day back that night. He agreed and then said, "I wish I had a shirt that said MILESTONE on it." So cute. At 8, he realizes how important and significant these times are in his life as much as the rest of us do.
Having Max return to school, even just for a few hours a week, is an enormous milestone, as you all understand. I was more emotional on Tuesday evening than I have been in awhile. To be honest, I was filled with mixed emotion. I am so thrilled that he is well enough to return to school and be with his friends again and yet, I am scared. His health remains fragile and although it is a good time of year to return to school and he does have a functioning immune system, if the wrong germ came his way, it could still be difficult for him. Even more than that, however, I realized on Tuesday evening what a huge adjustment this is going to be for me again. I have been lucky to have him with me, essentially 24 x 7 since this journey began and letting him out of my sight for long periods of time is going to be frightening. To top things off, thinking of our friends, the Akins and their tremendous loss again this week has made me never want to let go of my little ones! The time that I have had with all three of them here at home this past 18 months, as tough as it has been at times, has been precious. I already know, as I've said before, that I will treasure it forever. I know I have to let go a bit again and I am ready to do that. I just realized on Tuesday that it's going to be a bit harder than I thought!
Part of my increased nervousness this week is also due to some annual testing that is coming up for Max next week and the week after. Each year now, post-transplant, Max will have a series of tests run on several of his major body systems to see where things stand - his heart, lungs, bones, eyes and endocrine system. We have long days at the hospital planned for next Thursday and Friday and the following Friday to get all of the required tests completed, along with his regular monthly check-up with Dr. Davies and medication infusions. He is doing wonderfully and, as a result, I feel confident that all of the results will be good. With that said, it still makes us nervous. I don't know if there will ever be a test or doctor's appointment in Max's future where we will not be nervous, unfortunately. It just goes with the territory now. I'm not sure when we will have the results from all of this testing but, promise to keep you all posted as we know. All thoughts and prayers for good results are appreciated, as always.
The blood/marrow drive this weekend is shaping up to be a great success. Thanks to all of you that have volunteered to donate blood. We can also accomodate walk-ins so, if you have not made an appointment but would like to donate blood tomorrow, please come on up! I am sure that we will infuse Hoxworth with lots of healthy red cells to help untold numbers of needy patients. We hope to get several new people on the National Bone Marrow Donor registry too. What a wonderful day it will be when someone we know gets called to be a donor! My mom and I have a delicious Mother's Day lunch planned from Max's Meals for the inpatient families of A5 on Sunday too. We are looking forward to bringing a little comfort to the Hem/Oc and BMT mom's stuck at the hospital this Mother's Day.
Thanks for your continued support, love and prayers for all of us and our extended BMT family. More soon...
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)