Saturday, July 25, 2009

July 25th Day + 169

Ryan,

Mommy has had some emotional weeks, so I thought I would write to you again.
Although you are doing so well, I still have problems taking it all in. I think about it every day. Wondering, what will tomorrow bring. And hoping that it brings only good things our way from now on. Since your visit on July 8th, and all the news was still very positive, you have been full of life, full of energy and acting like a typical 4 year old boy.

You have had a blocked line, so we were in hospital trying to unblock it. Then 2 days later a hole in the line. I was a mess, I put you in the bath tub and saw blood running down your chest. I was scared, so back to the hospital we went. We were there for 4 hours and they sent us home with clamps above the hole so you did not bleed anymore.
We got a call from the nurse to tell us your lines would be taken out in a week. We panicked some more. The night before your surgery we got another call, stating you had been bumped and that it would be a day later. Mommy took you down and we waited all day with no food. I have to admit for a little boy who did not eat from midnight until 6 pm the next day. You made me proud. I could not eat in front of you, but by 2pm, all I wanted to do was eat, but I managed to keep us both busy with toys, books and the nurses were a great help, dressing you up like a DR.
I really do think that you are going to be the DR in the family. All you ask for is DR stuff, dress like one and tell us you are going to fix children when you are older. Go for it honey, I am behind you all the way, and if you change your mind at some point that is perfectly fine to. We are proud of you no matter what.

You have been granted your wish to Disney by the Children's wish foundation, and we are so fortunate to be going in just over 5 weeks. We leave on September 5th and come back on September 12th..What a week we are going to have. Mommy has already started planning and looking up everything that we can do. Florida here we come!!! We can not wait to spend so real family quality time together.

Daddy and I are signing up with the Children's wish foundation to walk with them this year and raise money for other children with life threatening disease's just like you. We want them to have any wish that they may want to come true. Ryan this charity is truly amazing! It gives families like us and others that are in our shoes the chance to do something great, after going through something so awful. We are grateful to the Children's wish foundation and all who donate to the cause.

I have delayed you going to school due to my own fears, but the way I see it is, it is only another 4 months from when school starts until January so really what will you miss in Jr. Kindergarten.

Mommy has also decided to go back to work to get back to our normal life. You have already asked me if I can go now as you are so looking forward to going back to daycare in September.
Mommy will be returning on September 14th as I have to find daycare for your sister Ally and make sure she settles in well.

Ryan, I love you so very much and one day when you are a little bit older you will understand all that you went through so much more. So many people had a part in your road and your recovery, but in the end, you had to do the fighting and you are truly an amazing little boy. We could not be any luckier. You are here with us and fighting like a champion. Keep fighting Ryan, don't ever give up.

Love Mommy.

Wednesday, July 8, 2009

July 8th, 2009 Day + 152

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.