April 21, 2006 at 10:14 PM EDT

April 21, 2006 at 10:14 PM EDT
Its been a very disappointing day for us today. Simons counts came back and his overall of Marrianas cells is only 23%. I flipped when they told me today. He has been doing so good I don't understand. This is 50% less than they were last week. We are beside ourselves with disbelief. It was a busy and stressful day taking all 3 kids to the hospital by myself and the girls were just wired. Simon had to get pokes for more vntr draws today and I was not expecting that. They couldn't get his vein so he got poked more than once. He seemed so poopie today. I had an appt myself so Dave met me at a gas station and we swapped kids so I wouldn't be late and met back at home for pizza. I feel so bad b/c the girls are being put aside while Dave and I try to figure out what to do next. The drs. want to see what these counts come back on tuesday and then they will make a decision based on those numbers. They have gone nowhere but down and it seems no matter how much we all pray the numbers keep going down. I talked to Marr today about maybe having to get harvested again. It broke my heart to even have to put it out there and she said she didn't want to because she was already brave for Simon. My heart breaks for her and for Simon and I don't know what to do but to try and believe this has to work. We dropped bakery cookies and a thank you note off to the nurses on 4West today with the hope we would never return.
Simon laughs and makes us smile so much and he gives me the most amazing hugs. I just want to eat him up. God be with him for this all to be over soon. I kept looking to June 8th (simons 100th day) and now I"m scared we might spend time of the summer back at square one. I pray and pray and pray. What else can we do. Our friend Jack who is being transplanted at CHOP is also having difficulty and has to have his transplant redone. God be with these boys and please keep them in your prayers and pray often and hard. Look around you today, you can't imagine the blessing that are right there in front of you. The freedom to visit friends, family. To go to the store, zoo, parties, parks anywhere even the grocery store without having to worry about anything. Its impossible not to even imagine not being able to do that. I have been trying to find things to do with the girls around the house because we cannot go anywhere even to run errands until Dave gets home from work and can stay with Simon. Its a bit tough some times, way better than being in the hospital and I"m not complaining but just not a normal way to the everyday. Well my friends, I'm exhausted so have a good night and a blessed weekend. Love Tracy and David