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KurtNYC

(14,549 posts)
Tue May 29, 2012, 10:55 AM May 2012

Parents let 9YO boy decide to end brain cancer fight

A 9-year-old cancer patient fed up with years of surgeries, radiation and chemotherapy has told doctors and his family he is done fighting the disease - and is ready to focus instead on making the most of his remaining days.

After fighting a rare form of brain cancer for more than half his life, Ryan Kennedy of Clarkston, Mich. has made the decision to stop treatment. When doctors told his mother about yet another surgery - one that could give him just three more months to live, but possibly with a breathing and feeding tube - he refused.


http://www.nydailynews.com/life-style/health/parents-9-year-old-boy-decide-treatment-5-years-fighting-brain-cancer-article-1.1078896

This is a tough thing to do because many neighbors and relatives will not understand it and they will be passionate about their opinion. Many still believe or want to believe that hospitals can cure brain cancers. By and large they can't. They can TREAT it but the treatments are barbaric -- chemo and radiation. I support this family's courage and am glad to hear that so many have poured out support for them, their son and their decision.

Now get that kid to a water park or where ever he wants to go!
33 replies = new reply since forum marked as read
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Parents let 9YO boy decide to end brain cancer fight (Original Post) KurtNYC May 2012 OP
It's a tough decision, but an extension of three months? PDJane May 2012 #1
Quite frankly, I'm appalled that his doctor would recommend this procedure at all. surrealAmerican May 2012 #23
I applaud his decision too... CaliforniaPeggy May 2012 #2
Brave little guy. marmar May 2012 #3
We have a 36 year old friend with cancer - she's getting blood transfusions every week GoneOffShore May 2012 #4
I totally support these parents and that child... Give him quality of life, for heaven's sakes. hlthe2b May 2012 #5
Can't blame him one bit. n/t ProfessionalLeftist May 2012 #6
He has fought the good fight. Are_grits_groceries May 2012 #7
Inhaled 3-bromopyruvate Th1onein May 2012 #8
For some people, sacrificing quality of life for a small amount Warpy May 2012 #9
I am so torn over this...he is only 9, does he understand the finality of this decision?? adigal May 2012 #10
If a miracle cure becomes available he could still try it KurtNYC May 2012 #14
I'm sure if he has been battling this for most of his life, he has seen many friends in the Fla Dem May 2012 #19
I bet he is wiser than his years. He is the one that will suffer. My best friend just said he wont rhett o rick May 2012 #29
Chemo can cure, but it is life sucking adigal May 2012 #32
There is such a thing as quality of life......... Smilo May 2012 #11
loving people will understand librechik May 2012 #12
Sometimes a sick child CAN know what's best for them SoCalDem May 2012 #13
an amazing son and an amazing story KurtNYC May 2012 #15
My Dad said nuts to extending his time via radiation and chemo too. Archae May 2012 #16
Childhood Cancers bpj62 May 2012 #17
Just so sad. I cannot imagine the pain of saying goodbye to my child adigal May 2012 #33
Heartbreaking. There are tears in my eyes (nt) Nye Bevan May 2012 #18
Please! Jesus Christ on a trailer hitch please! let the fundies leave this family alone riderinthestorm May 2012 #20
He's not a vegetable or a fetus pstokely May 2012 #22
A very brave young man, and a mother who obviously loves her child very much. May he have wonderful NotThisTime May 2012 #21
I can completely understand him not wanting to be a vegetable. Initech May 2012 #24
K&R for this brave boy. nt TBF May 2012 #25
He died on Saturday. But he did make it to his kas125 May 2012 #26
I completely respect his decision, and understand why he made it. Butterbean May 2012 #27
I know how you feel. My youngest kid, who is 21 and lives with his girlfriend kas125 May 2012 #28
and let him ManyShadesOf May 2012 #30
my good friend's husband just died of brain cancer. He held on a good long time but CTyankee May 2012 #31

PDJane

(10,103 posts)
1. It's a tough decision, but an extension of three months?
Tue May 29, 2012, 10:58 AM
May 2012

It's not worth further pain and illness. I have an acquaintance going through this now, and yes, there comes a time to let it be. He doesn't need my support, but he has it, as do his parents. Losing chunks of your brain is just not 'healing'.

surrealAmerican

(11,340 posts)
23. Quite frankly, I'm appalled that his doctor would recommend this procedure at all.
Tue May 29, 2012, 05:06 PM
May 2012

It would be inhumane to put the child through this for a diminished quality of life and such a short time. Prolonging and potentially increasing suffering should be against any code of medical ethics.

CaliforniaPeggy

(149,297 posts)
2. I applaud his decision too...
Tue May 29, 2012, 10:59 AM
May 2012

After everything he's been through, he has quite an excellent perspective on just what's happening.

Let him be a kid while he still can!

GoneOffShore

(17,309 posts)
4. We have a 36 year old friend with cancer - she's getting blood transfusions every week
Tue May 29, 2012, 11:05 AM
May 2012

She's in stage 4 ovarian.

She knows she's at the end, but has beat the odds so far and wants to hold on until the Mayan Apocalypse ("I'll go out with all my friends&quot . Her quality of life is mostly pretty good, but she would understand this kid.

Are_grits_groceries

(17,111 posts)
7. He has fought the good fight.
Tue May 29, 2012, 11:49 AM
May 2012

Now is the time to let him lay down his 'weapons' and enjoy whatever he can.
There should be no censure from anyone. He understands in ways nobody else does what the cost is and will be to him.

Fly free..........




Th1onein

(8,514 posts)
8. Inhaled 3-bromopyruvate
Tue May 29, 2012, 12:26 PM
May 2012

I think they've done some studies in terminal brain cancer -- I believe it was glioblastoma -- in children, with very good results. This stuff is killing tumors that would be the size of canteloupes, in humans, in mice. And, within a week!

I'm not a doctor, but if this were my kid, I'd take this stuff into account.

Warpy

(110,903 posts)
9. For some people, sacrificing quality of life for a small amount
Tue May 29, 2012, 12:29 PM
May 2012

of quantity is a good bargain. They might use those three months to graduate, to see a child married, to see the first grandchild. I can't fault them for that.

In my case, the focus would be on how curable a cancer is. For the ones like brain cancer with a poor prognosis, I'd go for palliative treatment, only. Radiation would be aimed at temporarily shrinking the tumor to restore enough function for me to tie up loose ends and get ready to go. Surgery would be out, as would be chemo. Just give me pills if I'm in pain and let me go gently.

The kid in this story made a wonderful informed decision about the end of his life. He's a lucky little boy to have parents who respected it.

 

adigal

(7,581 posts)
10. I am so torn over this...he is only 9, does he understand the finality of this decision??
Tue May 29, 2012, 12:34 PM
May 2012

Having said that, sometimes when people go off chemo and radiation, they actually get healthier for a few months because chemo is poison and radiation is killing good cells, too. But he is only 9 - I would keep hoping for a miracle cure around the corner. They are coming up with new things every day. I watch cancer treatment carefully, since my sister-in-law has Stage IV sarcoma.

KurtNYC

(14,549 posts)
14. If a miracle cure becomes available he could still try it
Tue May 29, 2012, 01:16 PM
May 2012

but chemo and radiation are not cures.

I lost a friend at 23 YO to cancer. Both his parents were already gone, also from cancer. At the end he told all who would listen: "If you know what will make you happy (and it doesn't hurt someone else) -- do it. 'Some day' might never come or you may be too sick -- do it ASAP. Don't postpone joy."

to you and your SIL.

Fla Dem

(23,351 posts)
19. I'm sure if he has been battling this for most of his life, he has seen many friends in the
Tue May 29, 2012, 02:56 PM
May 2012

pediatric ward pass away. He, more than most, understands. I hope your sister-in-law wins her battle.

 

rhett o rick

(55,981 posts)
29. I bet he is wiser than his years. He is the one that will suffer. My best friend just said he wont
Wed May 30, 2012, 12:40 AM
May 2012

go thru any more chemo.

 

adigal

(7,581 posts)
32. Chemo can cure, but it is life sucking
Wed May 30, 2012, 12:49 PM
May 2012

People get very depressed while on it, and lose their will to live. I do understand. I wonder if I were in that situation, would I go for more chemo, or stop it, and eat very organically, an alkanine diet, and meditate for health? I hope I never have to decide.

I hope your friend has peace.

Smilo

(1,944 posts)
11. There is such a thing as quality of life.........
Tue May 29, 2012, 01:06 PM
May 2012

and undergoing major surgery, chemo and radiation so he can live on tubes for three more months - this is not living it is subsisting.

I commend this very brave, very knowing, very courageous boy and his family.

As the OT said - get this boy to wherever he wants to go and let him LIVE his final moments - not waste away in some hospital bed.

librechik

(30,663 posts)
12. loving people will understand
Tue May 29, 2012, 01:08 PM
May 2012

poor little guy--his last moments on earth should be as comfortable as possible, not agony.

SoCalDem

(103,856 posts)
13. Sometimes a sick child CAN know what's best for them
Tue May 29, 2012, 01:16 PM
May 2012

After 29 surgeries in his 9 years, we asked our son's opinion on what the next surgery should be.

He chose the option that could have been done many times earlier (a urostomy), but it was HIS (and the physician's concurrence) that made the whole ordeal more acceptable to him.

Has we gone this route (the easiest) when he was a baby, we were afraid that he would have hated us for not trying everything we could do to "fix" what his birth defect had messed up for him.

His doctor later told us in confidence that he had NEVER seen such a young person who was so well rounded and confident, and how so many of his young patients with this defect were "urological cripples" with personality problems and poor body image.

Our son played sports, married and is living a great life, and I really believe a LOT of it came from our insisting that HE be a vital part of his own medical treatment/

Kids are much smarter than many adults give them credit for.

bpj62

(997 posts)
17. Childhood Cancers
Tue May 29, 2012, 01:26 PM
May 2012

As the parent of a 10 year old cancer survivor I can only say "there before the grace of god go I". My son has been lucky so far. He was diagnosed with Non Hodgkins Lymphoma at the age of 4 1/2 and he went through a one year treatment cycle and he just became a survivor in March of this year. I had many dark nights and thoughts surrounding the issue that these parents and thier son are going through and in the end it does really come down to the quality of life for the child and whether or not the treatment will extend thier life but take away thier ability to communicate or walk. At the age of nine I am pretty sure that Ryan knows exactly what will happen to him and I think he is at peace with it. letting go is the hardest thing to do but in the long run the only thing his parents can do is support him and let him know how much they love him. I hope that Ryans remaining months on this planet are filled will love and joy and that his pain will be minimized.

 

adigal

(7,581 posts)
33. Just so sad. I cannot imagine the pain of saying goodbye to my child
Wed May 30, 2012, 12:51 PM
May 2012

I am so glad your son is doing well. Hugs.

 

riderinthestorm

(23,272 posts)
20. Please! Jesus Christ on a trailer hitch please! let the fundies leave this family alone
Tue May 29, 2012, 03:23 PM
May 2012

to make the hard decisions they feel are best for them about the life and death of their family member.

Is this too much to ask?!

My heart just breaks for this family and this little boy. Now on to Disneyworld and Splash Mountain, and may all of his last days on earth be spent with laughter and joy.

NotThisTime

(3,657 posts)
21. A very brave young man, and a mother who obviously loves her child very much. May he have wonderful
Tue May 29, 2012, 04:27 PM
May 2012

remaining days and an easy passing

kas125

(2,472 posts)
26. He died on Saturday. But he did make it to his
Tue May 29, 2012, 11:48 PM
May 2012

10th birthday two days before which he wasn't expected to do. As someone caring for my dad who is going through treatment for cancer and watching my sisters and his doctor keep talking him out of discontinuing it when that's really what he wants to do (but for him it's mostly about how much it costs), this story really hit home with me.

Butterbean

(1,014 posts)
27. I completely respect his decision, and understand why he made it.
Tue May 29, 2012, 11:57 PM
May 2012

This story has just hit me so hard for some reason. Maybe it's his little face, I don't know. I'm just so torn up right now, and can't imagine, as a mother, being a mother in that situation. On the one hand, you don't want your child to suffer any more...but on the other, the thought of losing my child forever is a thought that makes me physically ill.

Bless him, he's not hurting any more.

kas125

(2,472 posts)
28. I know how you feel. My youngest kid, who is 21 and lives with his girlfriend
Wed May 30, 2012, 12:14 AM
May 2012

in another town, called me this morning and told me he broke his collar bone last night doing something stupid. (fell over backwards doing a wheelie on a little bicycle, the dumbass...) And even that has me hurting just thinking about it. I cannot even imagine and hope I never know how it feels to have one of my kids diagnosed with an incurable disease from which he'd die. It's hard enough doing this with my dad, who is 83 and has led a full and happy life.

CTyankee

(63,769 posts)
31. my good friend's husband just died of brain cancer. He held on a good long time but
Wed May 30, 2012, 01:32 AM
May 2012

finally my friend had to really make the decision. He was at that point unaware of what was going on. He was spending a lot of time just sleeping. For the last couple of months she had rented a hospital bed and he was cared for at home. She had hospice nurses come in. Then she knew he was going but needed more care than at home so he was moved to Hospice, where he died in his sleep a few days later. It was a dignified and tenderly handled situation. He was only 65.

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