Monday, July 13, 2009

Yeay, we get to go home!!!

Tomorrow is a big day!! Lucas' counts are high enough that he gets to come home. I will be talking to the oncologist tomorrow to discuss when to start him on his second round of chemo. Most likely it will be sometime this weekend or the beginning of next week. He is doing so well. His rash is gone and he received another blood transfusion today and had no negative reactions. Due to the fact that he had been having fevers they had him on 3 different antibiotics. They took him off 2 of them today and wanted him to stay one more night just to make sure there are no surprises. We borrowed my parents air mattress and slept on it last night. Why we didn't think of this sooner I don't know. But it is so much more comfortable than the little chair/bed they had us in before. Today while I was kissing Lucas on the head, I pulled away only to have hairs stuck to my lip gloss. His hair is totally falling out. I ran my fingers through it and it reminded me of when a dog sheds. I'm so glad we have taken a lot of pictures of him with his hair. And soon we will get to take pictures of him bald. He was so happy today. He was squealing and blowing spit bubbles and the whole works. I love to see him happy especially under the current circumstances. It's hard to be sad when he's so happy. He lifts my spirits and makes me laugh which is exactly what I need. His aunt Marnie was able to take him out on a walk around the hospital yesterday which he absolutely loved. Aaron's mom and dad were able to come stay with him this weekend and my brother Jake and his girlfriend Michelle were with him on Saturday. I'm so thankful that everyone is so willing to come and stay with Lucas so that he is never alone. It gives Aaron and I the opportunity to come home and be with Kaden and Jonas. I know they are excited to see their baby brother tomorrow and I can hardly wait to see how Lucas reacts to being home. He's been stuck here for over 2 weeks. It will be good and hopefully he will eat better at home. I'm hopeful that this regimen of chemo and radiation will work to shrink his tumor. There is another little boy (Travyn) who is 10 months old down the hall who has AT/RT also and is doing great!!! He has gone through radiation and just finished his 3rd round of chemo. His mom Whitney is so adorable and sweet. We have been chatting quite a bit about our experiences and they are very similar. This tumor is so rare that only 20-30 are diagnosed each year in the U.S. and so to have another case right here in Utah is so unusual. We are lucky to have each other for support because we can actually say that we know how the other feels. Travyn is so cute and has made leaps and bounds and his progress gives me so much hope. I love this hospital and the staff are incredible. Life is good!!!


  1. I am so happy to hear that your little man will be coming home soon. I know you have a long road ahead of you, but the opportunity to have your family under one roof will most likely make things easier for everyone.

  2. We'll keep reading...we are just down the road and in the same ward as the Huish Family, whose daughter had DIPG...this community is amazing and we are all here to love you and support you through your difficult time! The Ishmaels