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Partner rrrADAM


Feb 22, 2008, 11:53 AM
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My hero, Diego...
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My hero, Diego Fuentes…


This is my hero, Diego… He’s my son Justice’s best friend, and he’s a gregarious and articulate 4 year old boy with a rare form of cancer, Localized Stage 3 Spindle Cell Embryonal Rhabdomyosarcoma.

Diego is so brave that he has endured numerous MRIs requiring him to remain motionless for extended periods of time, a round of radiation and chemo therapy lasting months and requiring him to have a feeding tube, be isolated from his friends due to a severely weakened immune system from the radiation and chemo, extensive surgery to remove the cancer and reconstruct the muscles and nerves in the affected area (his wrist) with tissue and nerves harvested from both legs, only to still find cancer in the margins, and have to do it all over again. This has lasted almost 2 years !!! [written in Feb, 2008]

Why is he my hero ??? Because I often bitch and complain about having to endure much less, and will even quit at times because I am so impatient that I just can’t wait it out. Many times I have left items at the checkout line and walked out of the store due to my self-centered impatience. He has no choice, he just does it, he still smiles, and more importantly… He doesn’t quit !!!


This is a pic of him at the annual Jonathan Jacques Children's Cancer Center Torch Run 2007, held in Long Beach:

He was initially having trouble carrying the torch, as this was after his surgery, and his wrist was notably weakened by it… His mom, Michelle, asked him to let her help him, and he said, “No Mom! I can do it myself!”, clutched the torch tighter and picked up his step so much that all of us behind him had to quicken our pace just to keep up. He doesn’t quit !!!


Here he is at my son’s 3rd birthday party about a year ago, just weeks after the major surgery:

He just will not quit, and will try to do everything the other kids do !!!
Once again… He just doesn’t quit !!!


Here he is at his 4th birthday, just months ago, with the end to this battle in sight:




Continued in the next reply...


(This post was edited by rrrADAM on Aug 19, 2009, 10:50 AM)
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Partner rrrADAM


Feb 22, 2008, 11:53 AM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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He love’s that now he can go out to eat, and even go to school and play with other kids:



He’s even a great big brother to his little sister, Lilia (little mama):





Unfortunately, we have just learned that my hero, Diego, may not have beaten this, and may have to endure this all over again, and will likely even lose his arm. There appears to be another tumor at the site.

Diego, his family, and all of his many friends, which I am proud to be one, will endure this with him.

And once again, he will not quit !!!


That’s why Diego is my hero.



Please take the time to visit his page, and leave him a message in his guestbook:
http://www.caringbridge.org/visit/diegofuentes



----------------------------------------------------------


EDIT - The above was written in Feb of '08. On Christmas Eve of '08, Diego died after a long fight. The next morning, Christmas day, Diego's mom wrote the following on his page:
Michele, Diego's mom wrote:
THURSDAY, DECEMBER 25, 2008 09:26 PM, CST

Diego died in our arms surrounded by people who love him. He started having breathing problems the night before and went from 4 liters of oxygen on the nasal cannula to 10 liters with a mask. At one point his saturation was only 72 and his heart rate was falling to 87. He had been at 97- 98 breathing saturation and heart rate of 130's. He was working so hard to breathe. His heart rate went up to 183 and 100% saturation but still was struggling to breathe and it just did not stop. I think a tumor in his lung burst and took over what was left of his breathing space. We told him about an hour before he died he could rest now, that he could stop fighting. He said I want to fight. He was so loving up until the end. Leaving him cold and alone in his bed was the hardest thing we ever did. We know he was not in there but it is hard to except. We miss him so much but the gravity of the loss has not really sunk in so I imagine that this will get harder. For now we watch videos and look at pictures. We cry uncontrollably but also still laugh. It does not seem real.


Read his story, and of the people he touched in the following pages.


(This post was edited by rrrADAM on Aug 11, 2009, 1:22 PM)
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notapplicable


Feb 22, 2008, 1:25 PM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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Some people in life get dealt a hand seemingly so unfair as to be overwhelming, crushing even.

Its amazing the bravery Diego has shown in the face of Cancer. Most adults dont have that resolve.

Saddly it doesnt sound like is fight is over.


Partner wideguy


Feb 22, 2008, 4:17 PM
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Re: [notapplicable] My hero, Diego... [In reply to]
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notapplicable wrote:
Some people in life get dealt a hand seemingly so unfair as to be overwhelming, crushing even.

Its amazing the bravery Diego has shown in the face of Cancer. Most adults dont have that resolve.

Saddly it doesnt sound like is fight is over.

Perhaps that is exactly why they get dealt these hands, because they can handle these burdens that would make the rest of us wilt. They take them all for the rest of us.

Best wishes and prayers to Diego.


slablizard


Feb 22, 2008, 4:29 PM
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Re: [wideguy] My hero, Diego... [In reply to]
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GO DIEGO!


Partner j_ung


Feb 22, 2008, 4:31 PM
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Re: [slablizard] My hero, Diego... [In reply to]
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Wow, that's quite a kid. I see why he's your hero, Adam. Oh, and uh, what's up with the ghost legs?


wjca


Feb 22, 2008, 9:15 PM
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j_ung wrote:
Wow, that's quite a kid. I see why he's your hero, Adam. Oh, and uh, what's up with the ghost legs?

^^^^I was thinking the same thing. Albino maybe?

Kids are amazing creatures. The reason they are able to handle such unimaginable burdens is that they have yet to learn self pity. Ask imnotclever. He understands this. He has an amazing kid like Diego. They just don't know how to feel sorry for themselves, which lets them take this sort of thing in stride. I couldn't do it. And I couldn't tell you when the turning point for me was. I feel self pity, just like all other adults, but I don't know when it started.

I hope Diego can muster the resolve to keep fighting. I'd be shocked if he couldn't. It is my worst nightmare, something like that happening to one of my kids. But I know they'd handle it better than would I.


c4c


Feb 23, 2008, 5:51 AM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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Awesome Adam thanks for sharing that!


reno


Feb 23, 2008, 5:56 AM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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We often say that children need to learn from the adults, but I often think that maybe we've got that the wrong way 'round.

Brave kid. Amazing attitude.


Partner macherry


Feb 23, 2008, 7:28 AM
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thanks Adam for the kick in the pants...what a cool friend you have there....diego rocks!!!!


charley


Feb 24, 2008, 7:18 AM
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Re: [macherry] My hero, Diego... [In reply to]
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A touching story. An awesome young man.
I wish him the best of luck.


Partner rrrADAM


Feb 27, 2008, 4:26 AM
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Re: [charley] My hero, Diego... [In reply to]
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I want to thank the few who have taken the time to leave a message for Diego on his page, as Michelle and Frank read it to him, and they appreciate all the well wishes... It makes Diego smile and feel very special.


~Adam

ps... This is also a hint to all of you who haven't. Wink


(This post was edited by rrrADAM on Feb 27, 2008, 4:26 AM)


Partner rrrADAM


Feb 27, 2008, 9:34 AM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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Thanx Aaron. Smile


Partner rrrADAM


Feb 29, 2008, 4:17 AM
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Diego's site wrote:
GOOD NEWS! The lymph nodes and bone marrow are clean!! Pathology still shows embryonal subtype and 70% necrotic tissue! Me and Frank actually let out a huge sigh. I have a lot to say but not much time. Will update later tonight.
This means that it has not metastasized, and that amputation of the arm is all that is recommended at this time... Doesn't sound like good news, but compared to how it could have turned out if it had metastasized, it is... We are concerned with "survival".

Again, please take the time to leave him a message in his guestbook:
http://www.caringbridge.org/visit/diegofuentes


(This post was edited by rrrADAM on Feb 29, 2008, 4:18 AM)


bent_gate


Feb 29, 2008, 3:17 PM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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Diego officially gets a 10 on the coolness scale!


Partner rrrADAM


Mar 3, 2008, 11:23 AM
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Re: [notapplicable] My hero, Diego... [In reply to]
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Thanx Marge, Brad, Todd, & Andrea for signing his guestbook... It meens a lot to him and his family to know that so many people care.

Diego's actually looking forward to getting a "robot arm"...
He's gonna be the bionic boy.


(This post was edited by rrrADAM on Mar 3, 2008, 11:24 AM)


imnotclever


Mar 3, 2008, 11:56 AM
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Wow, I hadn't seen this until now. Brave young guy. Bionic arm; damn those kids, always positive aren't they. I can't begin to imagine the stress for these parents. It's got to be tough.


Partner rrrADAM


Mar 4, 2008, 8:34 PM
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Re: [imnotclever] My hero, Diego... [In reply to]
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Yea... Michelle and Frank are a bit stressed, but all the well wishes and messages help quite a bit:
On Diego's site, Michelle wrote:
The next update is about how wonderful people have been to us already. Bringing lunch and dinners. At Frank's work people are donating there vacation days. One of his colleagues donated a whole week! Another is working on setting up a fund. Diego's preschool has offered to let us use the playground when school is out and the volunteer said she would clean a classroom for Diego to come and play when he can't attend school. Not to mention all the people who have told us that they are willing to help when we need it. It means so much to us and has brought us to tears. It gives us strength and hope knowing we have so much support and prayers all around us.


(This post was edited by rrrADAM on Mar 4, 2008, 8:35 PM)


wanderlustmd


Mar 4, 2008, 8:38 PM
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Re: [rrrADAM] My hero, Diego... [In reply to]
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Quite the kid, to say the least. I'll say like you Adam, things like this help put everyday stuff in perspective.

Thanks for posting the professor's lecture as well, BTW.


Partner macherry


Mar 5, 2008, 6:58 PM
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Re: [wanderlustmd] My hero, Diego... [In reply to]
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come on folks, sign the guest book. unlike wjca and myself who are indulging in a pity party, Diego is moving full steam ahead. he's definitely my hero!!!!


Partner rrrADAM


Mar 5, 2008, 8:32 PM
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Re: [macherry] My hero, Diego... [In reply to]
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Karen (i.karen), my wife, was telling me about the Mom's night at the school last night, as she was sitting next to Michelle, Diego's mom...
Michelle, on Diego's site wrote:
Diego received the coolest gift from our Parkcrest Teacher family. A giant T-Rex puppet. It is almost as big as Lilia. He LOVES it and said it is the best T-Rex he has ever seen and napped with it today. I'll have to post of picture of him with it. Last night I went to Mom's night at Diego's school and it was so precious. He made me a necklace. When I tried to help him he said I can do it myself. Then they sang the sweetest songs to us. We then all got together as a school and sang songs. I was glad we could go. Keep praying for us. Diego told me a friend in his class can do lots of cool things he cannot do on our way to the park today. He said he can do a handstand and I can't. He then broke down and cried. I told him there would be thing that he cannot do but that there will be things he will be able to do that others cannot and that his friends like him whether he can do a handstand or not. He said thank you and sang one of the song from the previous night, You are my Mommy (You are my Sunshine tune). It was really sweet. I knew he had these feelings and was really glad that he finally shared them with me. Keep praying for us. Especially Diego.
http://www.caringbridge.org/visit/diegofuentes

And thanx for leaving a message on his guestbook Jeff.Wink


(This post was edited by rrrADAM on Mar 5, 2008, 8:34 PM)


c4c


Mar 6, 2008, 7:31 AM
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You know it is stuff like this that restores my hope for the climbing community and makes me proud to be a part of it!

Go Diego!


Partner macherry


Mar 6, 2008, 8:56 AM
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c4c wrote:
You know it is stuff like this that restores my hope for the climbing community and makes me proud to be a part of it!

Go Diego!

yup, there is a underlying humanity under all that internet posturing, trolling and name calling!!!!


carabiner96


Mar 6, 2008, 11:38 AM
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rrrADAM wrote:
Thanx Marge, Brad, Todd, & Andrea for signing his guestbook... It meens a lot to him and his family to know that so many people care.

Diego's actually looking forward to getting a "robot arm"...
He's gonna be the bionic boy.

Not gonna lie, bionic arms are pretty friggen sweet. So is he definitely having the amputation?


Partner rrrADAM


Mar 6, 2008, 4:02 PM
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carabiner96 wrote:
rrrADAM wrote:
Thanx Marge, Brad, Todd, & Andrea for signing his guestbook... It meens a lot to him and his family to know that so many people care.

Diego's actually looking forward to getting a "robot arm"...
He's gonna be the bionic boy.

Not gonna lie, bionic arms are pretty friggen sweet. So is he definitely having the amputation?

From the update on his page that preceded the one I posted above :
Michelle, on Diego's site wrote:
MONDAY, MARCH 03, 2008 02:19 PM, CST
I'll start with Sea World. We had a nice time but Diego was really tired as he was in much pain the night before and woke about 3 times. He did sleep for an hour on the way to Sea World but apparently that was not enough. Our friend Julie bought us dine with Shamu tickets and he was so tired that he really did not enjoy the show until one of the orcas splashed him in the face! Then he was excited. Lilia loved it.

We met with the oncologist today and Diego's surgery will be next Wednesday to amputate his arm. We will have a 3-5 night stay depending on his pain. The oncologist proposes we follow up surgery with 6 months of chemotherapy using 2 drugs. Adriamyacin and Ifosfamide and possibly radiation later on to his lymph nodes. We will talk to Dr. Calderwood and see what he thinks. I'm a bit tired so that's all for now. Feel free to ask questions in the guestbook and my personal e-mail is: MichelleFuentes19@hotmail.com


And Mo... Your message was perfect, and will do a lot to help.

You rule !!!


(This post was edited by rrrADAM on Mar 6, 2008, 4:22 PM)

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