Saturday, May 20, 2006

Thank You to the Toronto Star.

I have just read the article by the Toronto Star at thestar.com and we are very pleased with the work they did with the article. Elaine Carey, the medical reporter at the star did an excellent job researching the disease and we are so pleased with the number of people that will read the article and visit our site as a result. I had mentioned yesterday at the hospital that the difference between when a doctor writes a medical paper about the disease and when a major newspaper or someone who is experiencing the disease writes about the disease is who reads the work. Doctors write for other doctors to read. The latter write for the general public, and in this case I write for parents to read about the disease. So we are so pleased with the attention that this devestating disease will get today.

With such an in depth article there are only some very small additions that I would like to make. Parker resides on the reverse isolation unit which is isolated from the rest of the hospital. There are very few people that have access to the unit. Parker does stay in a reverse isolation room that is filtered regularly while on 8B; however, not all the rooms on the unit have a bank of filters. When a child undergoes a bone marrow transplant they reside in a reverse isolation room until their counts increase. Once that happens they move to a normal (but very clean) room on the floor. This is only the case for the children without SCID. Children with SCID must remain in their isolation room until they are discharged.

Parker is currently receiving enzyme replacement therapy by injecting the missing enzyme twice a week into his muscle. The idea behind this is to give Parker the enzyme that his body cannot produce so that the dATP does not run rampid in his body killing off his immune system. From my reading, this therapy works very well for two to three years but for some unknown reason the injections become less effective with time. For this reason we do not feel it is a viable final solution to ADA deficiency.

The treatment that we will be involved in in Italy will be covered by the telethon in Italy that is financing the study. While in Italy we will be put up in a residence similar to that of Ronald McDonald House here in Toronto. The expenses we will incur will be the result of not having any income for the next year while we try and help our son through this disease. As you can imagine there will be many expenses that need to be covered at home as well as additional expenses we will incur while living in a foreign country for an average of six months. We have no idea what the result will be with the gene therapy. We do know that we will have to return to Milan, Italy approximately four more times once the study has completed. If the therapy does not work, Parker would have to be placed back on PEG-ADA which is extremely expensive to say the least. We are not paying for the enzyme therapy at the moment but are not guaranteed anything in the future. It is all of the unknowns that make it very difficult to place a dollar amount on how much this battle with SCID will cost. We do know that we will get through it with the love and support we have gotten and continue to get from our families and friends.

Again we would like to thank the Toronto Star for all of their work with this article. We were so pleased after reading it this morning. I don't think we thank the nurses and doctors at Sick Kids in Toronto nearly enough. The work that they do there is truly remarkable.

Thank-you for taking the time to visit our site and learn more about this disease. We hope that everyone will continue to visit regularly to track Parker's progress as he beats this life threatening disease.

7 comments:

nana said...

First on the list - a very happy birthday to Tracy. Have a wonderful day and may the years ahead bring you as much joy as you have given us. You are "Daddy's little girl" and always will be "Mommy's shing star" - oh how you prove yourself over and over again.

Second - what a write-up in the Toronto Star about our little man (that would be you Parker!!!)

We are so sure that with all the awareness created for this horrific disease everyone will band together and support your Mommy and Daddy financially as best they can and you "little man" will be made whole and will always remain our "very very beloved little soldier"
We love you.

Nana and Granddad xoxoxo

Natalie said...

Parker Poo!

I have read your article little one...and I AM SO HAPPY that the news is getting out! Now everyone in Toronto will fall in love with you too!!!!

A VERY SPECIAL BIRTHDAY WISH TO YOUR MOMMY! I love you Tracy and I hope you have a wonderful day...I know it is off to a good start after reading the article about Parker! Happy Day!

Love,
Auntie Natalie xoxoxo

nonna said...

Hey Parker,

I hope you Mommy have a great day today on her Birthday, please give her a big Birthday smile for me.
Parker, I am a firm believer that things have for a reason. Sometimes it is very difficult and painful finding what that reason is, but I truly believe in my heart that YOU, Parker were put on this earth to be one of the leaders in crushing this disease.
Stay strong big guy!

love you tons

Nonna & Nonno
p.s. sorry I couldn't make our playdate today.

coolauntiekatie said...

Hiya Parkerpants!!

Wow, Front page!!!!!! You really are a SUPERSTAR!! It's truly an incredible article. Very informative. I think the Toronto Star did an amazing job. Hope you have a great day litte man!

Trace, I hope you have a very Happy Birthday!!

Love ya lots,
Auntie Kate xoxo

Allyson said...

Happy Birthday Tracy!
ENjoy the day!
Amazing article in the Star-I was really impressed with all the info in it!
Take care guys!
Parker-you really do continue to amaze me and like so many others have said-you are an amazing little guy who continually touches the lives of so many!
You are a super shiny star!

Take care
Allyson

Elizabeth said...

Parker darling,

As I have yet to speak to your mommy in person (she was being hte wonderful mom that she is and seeing you on her birthday, so she wasn't at home when I called!) please wish her a wonderful happy birthday, a day late. I know that this year will bring you home to them so your mom can show you off like she wants to - and you need to be!

Secondly, omigosh, I wasn't expecting the article to be on the front page of the Star yesterday! Yay to your family! :) What a great article, and I hope a lot of people read and learn.

Ok, now I have to go check the newest post - I have to see if you're still getting cuter! (I have a feeling the answer is yes!) :)

Love, Elizabeth

Stacia said...

Parker!!! I read the article in the Toronto Paper!!! What a great read!!!
You are a lucky little boy with all the support around you and sooo luck to have the mom and dad that you do!!!

Take care little guy,

~xoxoxox