August 2008 Archives
Today our little man turned 3. What a blessing! We had a whirlwind of celebration starting with a Pirate party complete with a homemade pirate ship, plank included (thanks to dad's wonderful sense of building) and little friends to help Simon celebrate. From there we had all the family over for a full day of celebrating 3 years of Simons life. He was so into his birthday this year. With his imagination running wild he comes up with the craziest things to say at the absolute most appropriate times and we all were cracking up at him as he opened his gifts and shouted out phrases with complete excitement. So wonderful to see the energy of life running through every inch of him. He loved his dress up pirate hat, eye patch and make-up, his pirate cake, the fact that everyone had come for "his" birthday and all the presents. We are just humbled by his presence. Not a day goes by that we do not thank God for Simon being here. For his energy, his health, his progress. For his sister Marriana who saved his life by donating her stem cells to him at age 3 ½ and again six months later. Two and a half years ago when Simon was diagnosed we were told "sure you can fix this, with a stem cell transplant". It was dropped like a bomb on us and we had no idea just what it would all entail. To this day I hope no one takes any type of transplant lightly. It is a long, hard, complicated road that messes up many other areas of the body and puts everyone involved through emotional and physical challenges for many years to come. If you are lucky, and we like to think we are, you have an outcome of being "cured". Ours took two rounds and we are not out of the woods. We also suffer a lot of side affects. But we make progress, we move forward, we learn, we live, we love and we continue to pray. Today we lived. We all went to Kiddieland Amusement Park and celebrated as a family the life of our son. He and his sisters loved it. Simon cried when I said no to the log ride but after a little persuasion he was sitting there with dad and sissy going down the steep drop while mom watched with a knot in her stomach and a tear in her eye. He LOVED it. He is a daredevil and his dad loves it.
It has been busy and tomorrow we head to stem cell for more remicaid. We saw the GI doc on Friday and when I asked if she thought Simon would ever be able to go without it she said "I really don't know but I think he will always need it". It made me sad and scared especially since no one knows what long term this drug causes everyone who takes it. It's a very scary place to be after struggling so hard to make him well. He definitely is at a point that he, and myself included, do not want to go to the hospital for anything anymore. We have loved our laid back schedule of once a month and we are done wanting to go to any appointments. With this week beginning we also head back to school and that means Simon too. He starts his program on Tuesday with an hour with us and then his first day without me on Wednesday. I meet with the "team" there tomorrow afternoon to go over last minute details to keep him safe and cool and then I have to let loose the strings a little and watch him grow. A bittersweet thing. So as we head into a new chapter for us here, please continue to say your strong prayers to complete healing. For his diarrhea to once and for all disappear (he has the beginnings of it back and this is at the 8 week in between remicaid doses. We had hoped to be able to go to 12 weeks between. Time will tell). And please keep him in your prayers for a very safe and very healthy school year. We are so proud and so blessed. Thank you for continuing on our journey with us. God Bless you All. Tracy and David
