Tomorrow Spence starts school. We are so excited for some routine even if it is only for a few days. We are so lucky to be getting such a wonderful teacher who has already met with us and accommodated Spencer and his physical limitations. It is our goal to be on top of academics this year. For those of you who know Spencer, know that he is a super smart kid. I just worry about him missing so much second and third grade and being lost, especially in math for fourth grade. Jeez, it seems like the years are flying by. Mrs. Beck our new teacher, assured us that we will have him ready! It was just so overwhelming being hit with this diagnosis last year that school was the last thing on our minds. He was so sick and we were so sad that it took a while to even get there. This year will be different. We are going to be disciplined and on top of homework. We have even thought of a science project that he would like to be a part of. He will be able to go this week and the first two days next week and then he will begin the first of eight inpatient stays, which is over a 4 month period. So, needless to say, he will only be at school on and off for the next four months depending on health and counts. When the four months are up then it is only clinic chemoes from here on out! So I am hoping that from February to the end of the school year that he will be able to go everyday. It makes the rest of treatment seem so close to the end. The end of course is if his tumor continues to shrink and is gone before the end of treatment. If it is still there, then we continue on with more chemo. That does not worry me now, we will deal with that when it comes.
Next week will be Isabelle's first day of kindergarten! I am sad to lose my helper and my girl but so excited for her. She is a super smart cookie and an excellent reader and I am just so thrilled that she finally gets to be a part of all of this. Because her birthday is in October, she is on the older end and has been in preschool far too many years! She has watched her brother over the past three years and learned along side him and she is now ready for her turn.
Big things are happening for us over the next two weeks. I am excited for school to start and I am thankful for the "low maintenance" summer we were able to enjoy with no in patient stays! I am thankful for a summer of no fevers and no infections. We had minimal throwing up and a relatively happy boy, who looks like he is getting healthier. Our new goal is eating, and drinking. He does neither of these. He is completely sustained by his feeding tube and it is such a pain. There is formula all over our house. In the carpets, the sofas, his bed, everywhere! It drives me crazy, I am always cleaning it up. The replacement of the feeding tube is so traumatic and the bag of formula is totally inconvenient, but to no avail. He will not give it up. He will not eat. I ask for your prayers that he will have a desire to eat and that food will taste good. It is a sad life to live where food tastes bad. Even if we could get one meal a day in him we could have less time on the feeds (since it is 24 hours a day now). I would love for him to be able to go to school with out them.
I am looking forward to my one on one time with my Gavs and for the kids to meet new friends and try to be as normal as possible!