March 31st Day + 52

Ryan,

Mommy has had a rough week. Since last wednesday I have had tears, and been very sad.
Just when I think we are getting back on track, Wednesday is here again. So I go from being upset about new we have received to what will be next.

Mommy went to the Dr. for herself this week to make sure that I can take care of you.
I have not been sleeping well, all I do is toss and turn and worry about you.
Dr. Walk has given me a mild sleeping pill and told me that if I can get a good night sleep, maybe the days will be a little bit more manageable. So I will try this route.

You got to meet Karen, Jeff, Ben and Natty this weekend. We had a brunch on Sunday and it was great.

Friday and Saturday you we not really yourself, but by Sunday you were eating well and drinking more and I saw alot more activity from you.

Mommy was telling her friend Heather (Kathryn's mom ) about what our news was at the hospital last week, and she offered some help. Heather said she could contact a Dr. she is in touch for Kathryn and see if there was any studies or other treatments for JMML outside of Canada. Ryan, within a day we had an email from a German Dr. who would be interested in hearing your story and giving us there opinion.

Mommy and Daddy have so many questions and Gramma and Grandad are coming down this week to the hospital to be a third set of ears to hear what Dr. Gassass says.

I am not convinced, that we are on track here. I am not convinced that we can not do another transplant to get your remainning cells out. All I keep hearing is a year...Why a year? Does it have something to do with Ally adn her age? I wish I knew.
Yet most studies and information on your disease show better results on a second transplant!

We have made a list of questions and hope to get the answers tomorrow.
I will also be sending my email to the Dr's in the United States and Germany with your case history for a second opinion. Ryan, we have to do this as we are your voice, we need to know that we are doing everything possible to get you better. It is not that we do not have faith in the Dr.s here( that is not it at all ) but there maybe someone else out there that can sheed a different perpective on your case, know a little more or can offer some other advise. I do beleive that there is no harm in this.

Ryan, I am not sure what tomorrow holds, but whatever it does, know that we are there fighting with you every step of the way. We will figure this out.

I can not wait until it is a bit warmer so you can play outside a little longer. We take short walks to the park, but you are to cold, so we don't stay long.

You are so excited that your Grandad and Gramma are coming to visit today. All you keep asking is can I go fishing with Grandad...Soon honey soon.

Ryan, Mommy has to apologize to everyone who has been reading the blog for the lack of updates this week.
I will post again tomorrow as to the news we hear at Sick Kids.