History

Journal History

Wednesday, July 31, 2002 at 02:56 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 5 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
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 !

Todays update ::: Hi everyone !!! I am here in the place where life is gooood !! We
are still concerned with the chance of cancer coming back but right now we are
having fun with life being alittle more normal, we still have a lot of meds to do and a lot
of rehab but life without chemo is sooooo much better !!!!
I have great news!!!!!! Devin had his Port--cath out on May 13th and he did soooo great !! It has been 29 times that I have seen my son go under for some treatment or an operation but I have never seen him do this well with it !! He healed pretty fast and we are doing scans already again this week !!! I am asking everyone to please say a few words to the big guy upstairs for us this week for clean scans !!!
What we are looking at now is rehab for his arm, getting
through the 6 months of post chemo meds and counting the months until he will be
deamed done with cancer !!
It takes 5 years, thats 60 months and we have 55 1/2 left to go !! The odds of it
coming back do get smaller after the first two - three years but they still have to wait
five !! I will feel better after we get to the one year mark !! I am still at the point where I
have to take it one day at a time !! I am looking forward to the point where the months
go by fast !! Right now I am the one having problems !! I can not seem to keep the
tears from falling down my face !! I know he is out of chemo and doing really great but,
I have held so many in and did not even see it myself !! I thought I was doing great
letting them all out at night when he was sleeping but now that he is getting better I
find that all this stuff is still inside me !! If you are going through this you are not alone
!!! I feel like I have had the weight of the world on my back for a year and a half and
now God has taken it from me and it is very overwelming !! I have had to be
supermom, always strong and keeping it together and now after all this time it is
hitting me !! My son had to fight cancer !!! I try to keep the faith and believe that it is all
gone but that is something I have to fight everyday !!! I just what him to stay ok !!! But,
one day at a time and this will get easier !!! With Gods mercy and love !!
Scan time is always a hard time !! I have to say thank you to the rest of my family and our friends !! How do they deal with me during scan time !! I really am very blessed !! My parents have been so wonderful, all the nights my mom stayed with us in the hospital !! She became my room-mate !! My best firends, the greatest !!!!! I picked the worlds greatest god-parents for Devin and they have my love forever and my man, wow, what can I say but thank you sweetheart ! My man has been right there getting me through it and being such a great Daddy to Devin !! Thank you Patrick for all the nights you held me and wiped my tears and for all the love you have given our lil boy !
All the nightly shots and everytime I had to access his port at home you were always there to give him Daddy power !!! I love you and always will !!
One thing we as parents have to come to terms with is the fact that the drugs (chemo)
that we give our babies to kill cancer also causes it ! So, we have to give it to them
now but we up the chances of them getting a different kind of cancer later.
Like bone cancer as a teenager. But that is something we accept, if we do not give it
to them now they will not get to be teenagers !!
So, on with the rest of the fight !!! Getting my son back into life and making sure he
doesn't worry anymore....thats my job !!!

So, I will fill you all in on what happens with scans !! Remember to say a word for Devin !! I know it really does help !!
We Love you,
Team Devin !!!

Wednesday, May 01, 2002 at 02:49 PM (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 5 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 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 !

Todays update ::: Hi everyone !!! I am here in the place where life is gooood !! We are still concerned with the chance of cancer coming back but right now we are having fun with life being alittle more normal, we still have a lot of meds to do and a lot of rehab but life without chemo is sooooo much better !!!!
I have great news!!!!!! Devin is on calender for the port to be taken out on May 13th !! It will be a hard one to recope from but I know he will do great !!
What we are looking at now is getting that out of him and rehab for his arm, getting through the 6 months of post chemo meds and counting the months until he will be deamed done with cancer !!
It takes 5 years, thats 60 months and we have 58 1/2 left to go !! The odds of it coming back do get smaller after the first two - three years but they still have to wait five !! I will feel better after we get to the one year mark !! I am still at the point where I have to take it one day at a time !! I am looking forward to the point where the months go by fast !! Right now I am the one having problems !! I can not seem to keep the tears from falling down my face !! I know he is out of chemo and doing really great but, I have held so many in and did not even see it myself !! I thought I was doing great letting them all out at night when he was sleeping but now that he is getting better I find that all this stuff is still inside me !! If you are going through this you are not alone !!! I feel like I have had the weight of the world on my back for a year and a half and now God has taken it from me and it is very overwelming !! I have had to be supermom, always strong and keeping it together and now after all this time it is hitting me !! My son had to fight cancer !!! I try to keep the faith and believe that it is all gone but that is something I have to fight everyday !!! I just what him to stay ok !!! But, one day at a time and this will get easier !!! With Gods mercy and love !!
One thing we as parents have to come to terms with is the fact that the drugs (chemo) that we give our babies to kill cancer also causes it ! So, we have to give it to them now but we up the chances of them getting a different kind of cancer later.
Like bone cancer as a teenager. But that is something we accept, if we do not give it to them now they will not get to be teenagers !!
So, on with the rest of the fight !!! Getting my son back into life and making sure he doesn't worry anymore....thats my job !!!
The last month has been great !!! We had a really great time with the family for my birthday and it was wonderful to see Devin so happy this year since last year on my birthday he had the port put in and it broke my heart to see him in so much pain !! This year was much better !! I am really looking forward to Mothers' Day !! Being Devin's Mother has been the biggest honor I have even been blessed with and I am so very greatful !!! I also want to honor my Mother ( Judy May) because she was right by my side through this whole thing not just helping Devin but she helped me more than I could ever express !!! There where so many times we were in the hospital and it had been so hard, I would see her coming down the hall with her suitcase ready to stay !! Ready to do whatever I needed help with !! Being my supermom !!! Thanks Mama !! I Love You !!!
So, I will fill you all in on what's happening and how his port removal goes.....say something to the big guy upstairs for us !!!!
We Love you,
Team Devin !!!

Monday, April 15, 2002 at 02:16 PM (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 5 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 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 !

Todays update: Along with the update on Devin, a little lesson in what chemo does ! Well, life has been good lately !!! Chemo has ended and as I said in the last message he did need a Platelet transfusion but he did great !! It is very normal to have to have blood and platelet transfusions after chemo because chemo kills all cells but thank God it kills cancer cells too !! What we deal with is the fact that chemo does not know the difference between good cells and bad cells so while it does kill cancer cells it also kills white cells, red cells, platelets and growth cells so no hair, nails and they do not grow during chemo. He has done very well. He only had to have 12 blood transfusions and only 4 platelet transfusions, sounds like alot but it is nothing next to most kids !! These kids go through more than we can understand until we are with them through it ! I know as his donor, my arms have gone through alot, can't complain, at least I can give to him, I am greatful for that ! It means I feel like I am doing something helpful. Even through he is now 5 years old he is only a little taller than he was at 3 1/2 years old. Devin is a very tall boy and he was able to get away with this part. Devin was as tall as most 5 year olds when he was 3, so it seems normal when you look at him now. He is still taller then most 5 year olds. The good thing about this part is that after chemo ends they do make up for this part !! The first two years after chemo they start to grow normally and also make up for the growth they lost. It is almost like the growth is just on stand by and building up waiting for chemo to end and when it does they grow like crazy. He was (as per bone scans) going to be between 6'6 and 6'8 feet tall !! WOW !! I am his 5'1 ( on a big hair day) Mother !! The chemo will end up making him a little shorter than that, he will end up being somewhere around 6'4 - 6'6. I think I am the only Mom that said "thank goodness" when they told me that part !! The whole family had to laugh at that part !! There are many really bad sides of chemo so when you find something to smile about , do it !! It is so much easier then the tears and there are alot of those ! There are tons of other things about chemo I could tell you but, I will be doing that in little parts so that maybe I can help other people letting them know what's to come and how to deal with it !! Things like, chances are they will not be able to have babies. That part is hard for the little ones because we are not sure !! Those cells are not working yet kind of in a dormant stage so only time will tell but the odds are not good. Think about this, my son is only 5 so who is to say what will be in 25 years, maybe they can fix that part or there will be another way around that !! Also, adoption can be a great way around that !! I just felt in my heart that I coule not worry about that at this time, it is more important for me to be a mom now. I will do the grandmother thing when that time comes !! But, some people are heartbroken over that part of it ! There are so many things about chemo that people never think of so , my advice, hold on to the ones you love, take it one day at a time and learn as much as you can !!!
Now whats going on him now !! Well, he is felling good and working on rehab, learning how to write again since we removed his forearm muscle that is something that has been hard for him.He is growing hair, not much but it is the most he has had in over a year so it is alot to us !! We had to get him shampoo and it made his day to pick it out !!! He had all of his scans and it makes me so happy to say that THEY WERE ALL CLEAN !!!!!!!! So, we have made the choice to take the port out ! As parents, depending on the condition of the port, you can make the choice to keep it in or take it out !! Reasons, you keep the port in if there is a chance that the cancer will come back but you still have to be very careful and they still can not do so many of the things the want to do like swimming in public areas or going to the beach or even things they might not want to do like going to the dentist !~ Or you can take it out and they can do all of those things after they heal from the removal !! I made the choice to take it out because I feel in my heart that we got it all and I want him to be able to live a little more normal !! Devin's wish from the wish foundation is to go swimming with dolphins !! He can not do that until the port is out !! A great reason to take it out for him !! So, we await the call with the date for that !!
Making plans for moving and Devin going to real school for the first time in his life !! We were very lucky when it comes to school !! I have been home schooling him since he was 8 months old because I felt that was best but I intended to send him to school for one year of pre-school and then kindergarten ! Well, that did not happen, he missed pre-school all together but the deadline for kindergarten was he had to have turned 5 before Dec. 15th and he did not turn 5 until Jan. 7th so he is not even old enough for it yet !! He should be able to start in Sept. of this year which will be right on track !!! I am so happy he will be able to do that !! He is so ready !!! Math is his best subject !! It is so nice to work on math and not chemo !!! We are getting ready to start having fun !! My 34th birthday is the 17th of this month and it is very different from last year, last year I spent my birthday holding my son while he was sceaming in pain on morphin because they had put the port in and did the hip bone marrow test that day !! I thank God that this year on my birthday when I hold my son I will hear his laughter not his pain !!! God really does make miracles happen please never lose faith !!!
Please keep writing on the guestbook, he loves hearing it all !! I will keep you updated !!

Monday, March 11, 2002 at 01:40 PM (CST)

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 5 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 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 !

Todays update:Well, we have been buzy !!!! I mean really buzy !!! Sorry you all have not heard much from me but I fill you all in on what's up now !!
Well over the last couple of weeks Devin has been through alot !! He had his long
chemo , that is where he gets 3 kinds of Chemo on Monday and two kinds everyday for the next 4 days !! It is hard on him but he does it with a smile !!
THE BIG NEWS IS IT WAS HIS LAST CHEMO !!!!!!! After all that he has been through it was such a joy to see his face when I told him it was the last chemo !!
We got him a few gifts and a cake and ballons, Grandma & Grandpa and Dad were there and even Father John was there with a blessing for Devin. It was a good day !! But, as we knew he bottomed out but this time it was big time !! He did not have to stay in the hospital but he did have to go to day hospital and have a blood transfusion last week and today the nurse just left and I have had a hard time stopping the bleeding , so I am sure he will need a platelet transfusion.
Say a few words for us to the man upstairs if you would please !!! I find that ending Chemo is hard for me because I fear whats to come but I know to just keep taking it one day at a time !! I need to hold on to faith and remeber that God has a plan and I have to believe in how strong Devin is !! I am just at a point where it is hard to believe that after a year of chemo that part is over and my mind is going a mile a minute with feelings and thoughts about it !!
I will fill you all in as things happen !! We have scans on the 22nd and 23rd of March and and going to see the Doctor on the 26th ! If all goes well we can make plans to remove the port from his chest and help him recope from that. Then it will be working hard on rehab and keeping the faith that we got it all !!!

I would like to take a minute and ask you to say a few words to the big guy upstairs for someone else !! Over the last year at this hospital we have become very close to other families that are going through this because they are people that understand what you are going through and you spend a great deal of time together !! There was an angel of a 3 year old boy named Ryan and his mom Shelley, who like me spent every minute with her son ! They fought this for over two years and it breaks my heart to say that on Monday night Ryan lost his fight !! I ask that you not only keep Ryan in your heart but his parents as well, send them your strenght so that they can find some way to get through this, Ryan was one of Devins best friends there and I will never forget this little boy and all the love that was in his eyes. Ryan we will love you forever!
There are so many things about your child having cancer that so many people never think of !! Losing the friends around you is one of the hardest parts but, we are getting thur this one step, one day, one gift from God at a time ~!~!
Thank you for all the love you all have given !!! Believe me it helps so much !!
We Love You !!!
Team Devin !
Devin,Deborah,Pat, Brandon, Jessica, Grandma May, Grandpa May

By the way there are 2 pictures now in the photo album..check it out !! They are both right after treatment began but I will have his christmas pics up soon !!

DEVIN, YOU ARE THE PERSON WHO
MAKES MY HEART BEAT AND MELT ALL AT THE SAME TIME !!!! STAY STRONGE AND BRAVE!!!!
MOMMIE IS SO PROUD OF YOU AND LOVES YOU SO MUCH !!! THANKS FOR BEING MINE LIL MAN !!!
I'LL KEEP YOU ALL UP TO DATE !! LOVE YOU ALL !!!

Look at past journal entries

Wednesday February 13, 2002 2:48 PM CST

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 5 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 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 ! We have 1 months, 2 weeks left of 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 !

Todays update:Well, we have been buzy !!!! I mean really buzy !!! Sorry you all have not heard much from me but I fill you all in on what's up now !!
Well over the last couple of weeks Devin has been through alot !! He had his long chemo , that is where he gets 3 kinds of Chemo on Monday and two kinds everyday for the next 4 days !! It is hard on him but he does it with a smile !! Well, as we knew he bottomed out but this time it was big time !! He did not have to stay in the hospital but he did have to go to day hospital and have two blood transfusions and two platelets to get him back to an good level ! He was doing really good so we took him to Universal Studios for the only weekend last month that he was well enough to go but we only spent half the day there !! He had a great time !!! Childrens Hospital Los Angeles is great !! They give the kids tickets for the whole family to places like this so that they can have some fun once in a while when they are well enough to go knowing that parents that are going through this can not afford to take them any other way so ...thank you CHLA for the tickets !! The next Monday it was back to chemo, he had the biggest chemo of his treatment..he gets this every other 3 weeks, it is the same amount of Chemo that he gets over the 5 days but he gets it all in one day !!! I am so happy to say that this was the last one like this that we have planned !!!! He did it 8 days ago !! He has already, just from Thursday to Monday gone from an ANC (total white cell count) of 32,000 to 1,510 so we know that by Thursday of this week he will be at a 0, we have bags packed and by the front door and are ready to take off to the hospital whenever he needs to go !!
We are getting ready to do his last Chemo in March and then scans to make sure we got it all !!! Say a few words for us to the man upstairs if you would please !!! I find that ending Chemo is hard for me because I fear whats to come but I know to just keep taking it one day at a time !! I will fill you all in as things happen !!

I would like to take a minute and ask you to say a few words to the big guy upstairs for someone else !! Over the last year at this hospital we have become very close to other families that are going through this because they are people that understand what you are going through and you spend a great deal of time together !! There was an angel of a 3 year old boy named Ryan and his mom Shelley, who like me spent every minute with her son ! They fought this for over two years and it breaks my heart to say that on Monday night Ryan lost his fight !! I ask that you not only keep Ryan in your heart but his parents as well, send them your strenght so that they can find some way to get through this, Ryan was one of Devins best friends there and I will never forget this little boy and all the love that was in his eyes. Ryan we will love you forever !!
There are so many things about your child having cancer that so many people never think of !! Losing the friends around you is one of the hardest parts but, we are getting thur this one step, one day, one gift from God at a time ~!~!
Thank you for all the love you all have given !!! Believe me it helps so much !!
We Love You !!!
Team Devin !
Devin,Deborah,Pat, Brandon, Jessica, Grandma May, Grandpa May

By the way there are 2 pictures now in the photo album..check it out !! They are both right after treatment began but I will have his christmas pics up soon !!

DEVIN, YOU ARE THE PERSON WHO
MAKES MY HEART BEAT AND MELT ALL AT THE SAME TIME !!!! STAY STRONGE AND BRAVE!!!!
MOMMIE IS SO PROUD OF YOU AND LOVES YOU SO MUCH !!! THANKS FOR
BEING MINE LIL MAN !!!
I'LL KEEP YOU ALL UP TO DATE !! LOVE YOU ALL !!!

Sunday January 20, 2002 10:24 PM CST

Sunday, January 06, 2002 at 02:14 PM (CST)

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 4 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 hospital 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
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 !
We have 4 months, 3 weeks left of chemo and then scans every 3 months for 5
years !! Then my son will have the next 100 years to reflex on all of this !

Todays update :Hi everyone ! Well, I know I have not been writing but we have been buzy !! We were able to take Devin to Disneyland and he had a blast !! A special thank you to Buzz Lightyear, Scott, Cheryl and the staff three for making it so wonderful for him !! Well, he came home from that and had chemo for which he needed two blood tranfusions to recope from it and it was hard and then he was right back on track ....just in time to do it again !!He had chemo again on the 17th of December and is now completely bottomed out !! We were worried he would have to have christmas put off but he sailed thru like the hero he is and still even bottomed out he is ok !!As of today he has really low Platlets and no white cells, no anc ( which means he can go no where) but, he is ok !! We have a doctors appointment tommorrow and we will know more then !!! I'll write again soon !!! By the way !! Thank you so much to the friends that helped make Christmas so beautiful for him...like Grandma and Grandpa, Mark,Wanda and kids, Ray, Sylvia and Taylor (Devin's wonderful little girlfriend) and The incredable people at Childrens hospital L.A. !!! We Love You !!!
Team Devin !
Devin,Deborah, Pat, Jessica, Brandon, Grandma May and Grandpa May

OK....Jan. 06, 2002 Happy new year everyone and happy birthday to Devin for the 7th !!..TODAY'S DEAL !!! I will be leaving the other update up until one more person visits !! By the newest information is here ~!!Devin was on his way back up in counts and he was to go in to day hospital on the 31st so I got dressed and went to get him up and he was burning up so off we went to ER, he had a temp of 103.4 !! They got the temp down right away but we ended up living there for a few days !! Thank goodness I always have bags packed !! So, that is where we were for New Years eve and we just got home on Wednesday evening! But to our surprise and happiness on New Years eve night we looked up and there was my wonderful Mom !! She stayed the whole time and never left , she made it so much better !!! With sparkling cider and all !!(thanks Mom!)Dad and Pat came everyday and Brandon came with on Wednesday ~! Well, we are home but, starting on Tuesday he will be on 2 different kinds of chemo everyday for the following 5 days !! Almost done with treatment and it is getting time to get happy !!!
By the way there is a picture now in the photo album..check it out !!

ON MONDAY THE 7TH MY WONDERFUL SON, MY HERO WILL TURN 5 YEARS OLD !!!!! A SPECIAL HAPPY BIRTHDAY TO THE PERSON WHO MAKES MY HEART BEAT AND MELT ALL AT THE SAME TIME !!!! DEVIN, MOMMIE IS SO PROUD OF YOU AND LOVES YOU SO MUCH !!! THANKS FOR BEING MINE LIL MAN !!!
I'LL KEEP YOU ALL UP TO DATE !! LOVE YOU ALL !!!

Monday, November 26, 2001 at 02:17 PM (CST)

Hi everyone !!
Hope all is well with you !
Quick history !
IF YOU HAVE READ THE HISTORY MOVE ON TO TODAYS UPDATE !
Devin is my wonderful 4 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 hospital 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 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 !
We have 4 months, 3 weeks left of chemo and then scans every 3 months for 5 years !! Then my son will have the next 100 years to reflex on all of this !

Update for today :
I called the hospital yesterday because I can tell Devin is going to need a Platelet transfusion. He is showing all the signs ! After awhile you learn what to look for and lets face it a mother knows her children !! The home care nurse just left and we are waiting for the counts ! If you know anything about cancer you know that the counts tell you sooooo much !!!
7 - 10 days after a big chemo, the counts ( white and red blood cells, ect.) will bottom out and if he gets a fever you have to go right away ! That is so important ! You can not waste any time !! I always pack the bag when he is at his 4th day after a big chemo ! I always stay with him and my mom comes to join us so we make more like a slumber party so it can at least be alittle fun for him !
Devin is at day 9 this time and we are still home, with bags packed and sitting in the hallway but we're home !
I know his counts are bottomed out ( you can always tell by the way he looks and acts) but as long as he has no fever we are gonna be at home ! He can not go anywhere when his counts are this low, just home and the hospital with a mask on ! He had another blood transfusion last week and is doing great from that but the counts today will tell us more !
He says he feels great and is really having a fun day ! We are going to make a turkey out of hands, sounds wierd but it is gonna be really cute !!
When you have to be at home so much or at the hospital believe me you find alot of fun arts and crafts to do !!
He wants to tell his Grandma & Grandpa May that he loves them !!
Well, I will fill you all in when we get back the counts !!

We Love You !! Deborah and Devin

ok guys ! Got the counts !! These are hard to understand unless you know alot about blood and cancer !
but, in a nutshell-
wbc-.67 ( that means he can go no where !!!)
hbg- 7.1 ( which means he might need another blood transfusion, we will know more on thurs.)
platelets- under 5000 ( which means platelet transfusion and I will have a hard time stopping bleeding so he has to be very careful !)
Hey, you tell an very active 4 year old to mellow out ! LOL !
anc- 214 ( which means he can go no where but he should be on his way back up since it is not zero)
Because it looks like he is on his way back up we are going to wait until we get the next counts on thurs. to see if he can do it on his own without any transfusions. We will be at home unless he spikes a fever or bleeds, then we will be at the hospital ! We love you ! Talk to you all on thurs.

Monday, November 26, 2001 at 12:25 PM (CST)

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