Devin's Page Of Blessings !!

Welcome to Devin's Page, This is a page so that family and friends can always find out what is going on with Devin !
Devin is my hero ! My 6 year old son with cancer. The strongest person I know !
His kind is called Rhabdomyo Sarcoma. You can learn alot about it from these pages.
My son was dx march of 2001 so it will take me some time to get all the info in the history part of this site ! I will have the current info and everything since Thanksgiving 2001! Does everyone know what Deb was thankful for this year!!! My wonderful baby boy ! Also a daily update about what's going on with him now ! Please sign the guest book, he loves to hear from people and know there are prays out there for him !
We love you !
Deborah and Devin !

Journal

Wednesday, May 21, 2003 10:36 AM CDT

Hi everyone !! Hope all is well with you all ! Quick history !
IF YOU HAVE READ THE HISTORY MOVE ON TO TODAYS UPDATE ! Devin is my
wonderful 6 year old son ! He has Rhabdomyo Sarcoma ( Cancer), there are two different kinds of Rhabdomyo, there is Embryonal and there is Alveolar, Alveolar is the more aggressive of the two. Devin ended up with both but more of the Alveolar because Alveolar is the more aggressive we attack it with all that we have. He had a 1.2cm tumor in his forearm muscle that I found Oct. 2000, On March 9th, 2001 they finally listened to me and took it out to find out it was cancer, F.Y.I. a mother always knows when something is wrong with the children !
On April 9,
2001 he had his forearm muscle removed to get all the rest that they missed ! We went to a new Doctor for that one! A Great Doctor! Then the rush to find someone who could give my son chemo, after checking with many hospitals we made the best choice we could of made. We took Devin to Childrens Hospital Los Angeles, they knew what he needed and wasted no time doing it for him ! On April 17 (my birthday) He had a port-a-cath put in his chest to give him all his meds including chemo., The port turned out to be a blessing ! And had a bi-lat hip bone marrow done that came out clean !! He started chemo the next day !
Well, all these months later he has done tons of chemo ( 4 different kinds) and 4 weeks of Radiation everyday (I love the people in this dept., They are the best !)and all the blood and platlet transfusions taht go along with it as of scans in June and Oct. of 2001 they can not find any more cancer !!! Ahhh, remission !! I never thought one word could sound so beauitful ! The treatment is working great !! Thanks to Dr. Earl Brian for doing a great job taking out the muscle,it came out so much better than we thought because of him !! And Dr. Marcio Malogolowkin, his team and the great staff at Childrens Hospital Los Angeles for doing all treatment since !! Not to mention getting me this far with some sence of
reality left ! LOL ! Well, we have now done all the chemo and then once a month
appointments and scans every 3 months for 5 years !! Then Scans once a year for the rest of his life!
Then my son will have the next 100 years to reflex on all of this !

TODAY'S UPDATE :
Hello everyone !!! Thank you so very much for all of the love and and words of support we have been given !!!
Devin is doing wonderful and has really grown !! He will soon be taller than Mommy and laughs about it everyday !!
To see him now, other than the scars, which he refers to as his badges of bravery, you would never know he was ever sick a day in his life ! To see him now is so very different !!
God has given us such blessings and such a miracle ! Wow in my life I have been given proof not only once but twice that Jesus is very real and can hear what we say and does give, if we just ask !!
The first time was on Jan. 07, 1997 when the Doctor said, it's a boy and I became a Mother and the second was when yet another Doctor said, he is in remission, I knew I was going to be able to remain a Mother.
Being this childs Mother has without a doubt been the most wonderful blessing I have ever known and I am so greatful that God trusted me with him !!!
When I look at him now and see so much life in him tears of joy run down my face and I am overcome with love because it was not so long ago that so many people thought we could lose him !!
You know it really is kind of wierd when you think about it, we look back at pictures now and we understand what they all meant ! We saw the changes everyday and we all looked at him and just thought, well that is our baby and we love him or when we would be able to go to the store with him and people would just not stop looking, I remember wondering if my dress was tucked up into my nylons or something, LOL !! I could not figure out what they were looking at because all I saw was this amazing child that was so filled with love that he was so very beautiful.
But now, looking back at the pictures I realize what they were seeing, the problem that most people do not realize is what they are seeing is not the truth !!! Not at all !! What they see is a skinny, pale kid with no hair and big dark circles under the eyes and and iv bad hooked up to them and they think all these things but they missed something !!!
Please look past all of those things, they are not the child, just side affects of something they are going through !!! Please, please look into the eyes and if you let your self do that and don't look away because you can not deal with the other stuff. I promise that the child will teach you something you can not learn anywhere else in the world !!! It is called LOVE !! In the true sence of the word !! These kids know more than you or I will ever know.
I am a 35 year old woman ( I can not believe I just wrote that down in ink) !! I am learning more everyday from my son and together we will keep learning for years to come and doing what we can to help other kids and parents that have to endure the same journey that we are on.
So on with Devin's life !!! God that sounds sweet !!
He is now in Kindergarten and getting all A's !!!
He really loves school and can not wait until he becomes a doctor !!! He wants to do so many things !!! He just is happy he gets to live his life !! He takes nothing like that for granted, yet another lesson we can all learn from him.
The first is he wants to make sure people do not forget about Jesus, he feels that people get so busy in life that they forget that Jesus lives life with us everyday and he wants to remind them of that ! See what I mean about kids with cancer, they know more than we do !! I have told him that sharing his story should be proof that Jesus is real and if they do not see it, he can talk to Jesus for them and ask that he helps to remind them !

The other, his wish !! He had to wait until he was in remission and got his port-a-cath out before he was able to get his wish from the wonderful Make-A-Wish Foundation and now it is finally time !! He is so happy, when he grows up ( doesn't that sound better than if he gets to grow up ! ) he wants to be a, as he calls it a dolphin doctor, he says that something in him just knows that there is so much to learn from Dolphins and he wants to learn it and show the world, he wants to change the world with his love, he has always said that but now he says that he will do it through Dolphins ! I have to add this it is too cute ! He says the only thing he wants to do with sharks is to teach them ...no bitting !! And if they do not listen he will take them to the denist and have all their teeth taken out !! I guess you all see a little bit of his wonderful, funny personality.
Well, we are going to Hawaii to spend a week swimming with Dolphins and the whole family gets to go !! Because of bacterial levels we had to wait until he was healthy enough !!
So now we are getting ready for summer and to go !! If I can get him to stop jumping up and down long enough to get ready. It won't be for a month or so and he has already starting packing !!! He is so funny !!!
I will let you all know what happens with scans, yes we still have to do them all the time to make sure it stays gone but we are moving forward to life and all the joys that go with it !!
He loves that he can play in the yard and get dirty without any more worries !!
I as his Mother could never have made it this far without the love and support of my family and friends, so thank you so very much !!
Keep writting in the book and I will put up more picturs soon !!

If everyone that reads this could do us one favor, please take just a moment and thank God for showing such mercy and letting us keep Devin, it would mean alot !! We have to make sure he knows that we know it was a gift from him !!
We will continue the fight and praying for those who are in it !! May God's love and mercy be with you always !

We love you !!!!
God bless !!

Team Devin

Look at past journal entries

Email address  : mywingstofly@hotmail.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 8653 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.