Ryan,
Another great day at SKH. Dr. Gassas is thrilled with your progress. 5 months in remission. 5 months post transplant. You are a trooper.
He asked me if I was happy? All I could stay was I was thrilled to know that you are doing so well. He also re mined me of the severity of your disease. It is like a flip of a coin! 50% we will not see this again and 50% that it could come back at any time.
He said, Suzanne, when we get to a year in remission we sigh, when we get to two years we say phew. He said the longer you remain with no cells of your own the chances of them coming back weaken. This is what I pray for. That your sister has done her part and weakened your cells from returning. Let's hope and pray.
Dr. Gassas, has confirmed he has started the process to have your central line removed, and that you are now able to go places with out your mask, you may also travel to Montreal and he has given you the OK to travel to Disney World for your wish, through the Children's wish foundation.
Wow, Ryan we can go on a family trip together. This is something that we could all use and look forward to. I will be starting that process tomorrow.
We can stop your medication Septra and we will continue on Penicillin for a full year!
Really this is like a ticket to get back to our old life and knowing that we still have to make well judged decisions for you.
Mommy, will be looking at all options in the up coming months as to what is best for our family.
I have to decide about going back to work, daycare for you and Ally.
Dr. Gassas has said you can go to school, I said no, and he said Why? I told him I was not comfortable and will most likely wait until January. He made a good point about you getting back to a normal life and having something to do, something to enjoy, meet new friends and be like all the other kids your age.I am looking at the options, but still don't think that 4 months will make that much of a difference.
Your next appointment, believe it or not is not until September 8th. A full two months away.
Ryan, Hope is a wonderful word, a word that I have continued to see through out this journey with you. It is a word I hold on to, you need to hold onto it too.......
We love you and are glad you are doing so well...Keep it up sweetheart....
Love always,
Mommy.
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Go Ryan Go!!! We are all hoping along with you! Hope can give us so much! Hope is something we grasp with both hands and hang on tight!
ReplyDeleteI still have my 'Roar for Ryan' knecklace from the fundraiser hanging in my room and I think of you and your family every time I look at it.
This is wonderful news and I am so happy for you and your family. You have given a great fight!
Disney World here you come! Enjoy! Enjoy! Enjoy!
Anne
:)
Hi Ryan:
ReplyDeleteCongratulations!! For one so young you sure accomplished something amazing. After all that hard work you now get to enjoy a return to your normal life, visiting family in Montreal and going to Disney!! Wow!! You must be sooooo excited. And the best part - removal of the central line, less medicine to take, no doctors until September!! Double WOW!! Enjoy planning family things again. Come for a swim anytime.
A parent's hope for their child is a powerful and wonderful thing. That combined with love makes almost anything possible. Your mom and dad's hope and love for you, your sister's remarkable gift and your hard work were a winning combination.
Enjoy coming out of your cocoon and flying once again.
Love to you and your family
Elaine