July 15, 2012

We have all enjoyed another week at home with no hospitalizations! Although it was a bit busy. We had the visiting nurse come on Monday, an Occupational Therapist on Tuesday, clinic on Wednesday, and a nurse and social worker on Thursday. I'm not sure if I will get used to all the visitors we now have, but so far they have all been great for the most part. The week went well with no big issues which is great. Mac began a round of 5 consecutive days of oral chemo on Wednesday. I am more and more thankful for his g-tube with each day that passes! I was able to administer the chemo myself here at home by just opening the capsule, mixing it with water, and just putting directly in his tube. So great to be home and it was even better he didn't have to taste it because from what I hear it is HORRIBLE. Mac is doing well swimming in the pool or rather canonballing into the pool. He is up to 50 lbs and is getting not only stronger but happier with each day he spends at home.

Liam is still struggling. He has asked to see a therapist to talk about his feelings. During a conversation he told me he feels angry, sad, mad... all these feeling all the time. He also said he has not felt happy since Mac was diagnosed with cancer. So the visit from the social worker on Thursday could not have come at a better time. They are going to be coming or setting him up with other services from professionals and volunteers that come right to the house. I can't begin to imaging what he is feeling. Liam has carried the weight of the world on his shoulders his whole life. He feels empathy like no one I have ever met. It has been so hard for him to have his whole world torn apart, watch his little brother vomit, lose weight and go bald, see Mac get frustrated with the constant tremors in his hands, and learn that Mac can no longer do the things that used to come so easy to him. We have never instilled in Liam a feeling of responsibility for his brother because we never had to it was just always there. Liam is so protective of his brother and I fear for all of our futures... this disease could destroy us all in an instant.

I continue to be thankful for all of our good days and pray for Mac to make a recovery. Thank you all for your continued support.