Losing a Child to Cancer
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18-03-2014, 11:49 PM
Losing a Child to Cancer
I am sitting here in tears. I don't know where to begin. I am choosing this forum, this group of people... this family, to pour my heart out to. I don't want to do this on Facebook or anywhere else. But if I don't talk about it I think I'll lose my mind.

I have two beautiful daughters. My oldest is 27. My youngest is 26, and when she was 23 she was diagnosed with Chronic Myelogenous Leukemia. How the hell does a child get cancer?! She's been on the treadmill of state medical, on again, off again doctors and finally found a good oncologist in Phoenix (when we all lived there) who put her on Gleevec. All seemed hopeful.

Since then we have all had our own little personal trials and tragedies. I had lost my job, apartment, car... I ended up homeless. Through the VA and some charities I was placed in transitional house and because of my Fibromyalgia and a few other medical issues, I waited out my year in that Hilton for the Homeless while my lawyer helped me get disability. I then took my backpay and got the hell out of Arizona (I hated it there). Since then my youngest moved to California to live with two of her cousins.

She has been going through the bureaucratic bullshit of transferring her Medicaid to Medical and the red tape of "waiting" to get back on the medication. In the meantime, she is dying. Because she doesn't want to "worry me" I don't get all the information - I don't know the details of what's actually happening. She talks to me and just glosses over it, and stops me from pushing for answers such as "are you taking your meds?" or "why are they dicking you around!" etc.

I spoke with her sister today and she confided in me that she couldn't keep it from me anymore. Her little sister is not doing well. She's already relaying her final wishes, who she wants there at "that time" and who is not welcome. This fucking SUCKS! I am up in Oregon. I'm on disability income. My other daughter is in Arizona. Why is she not being provided her medications? How the HELL do you put someone with a fatal condition on a waiting list for their meds? What's going on? Why can't I ask without being patted on the head? Why can I not save her?

All I can think of is storming the Governor's Mansion in Sacramento, picketing them, YELLING AT THEM!! My daughter is fucking dying and you don't give a shit! I'm reading the message loud and clear: YOU CAN'T AFFORD THE CARE AND MEDS WITHOUT OUR HANDOUTS SO YOU'RE NOT ALLOWED TO LIVE. My heart is being torn to shreds.

She does have family around her, but I need to be there for her, with her. I need to bring my Irish ire to her healthcare providers and light a fire under some asses. I need to get to the bottom of this. But she doesn't want me to. I think she wants to go. I don't know how to accept this. How do I let my baby go when she could have a chance at a near normal lifespan with the right care? And now I'm doing exactly what she didn't want - I'm crying my heart out. I'm emotionally devastated.

I don't think there's a person here who wouldn't do ANYTHING they could to save their child. And yet, I feel completely helpless. I just want to be with her. I want to spend all the time that's left with her. But we're just statistics. We're just the invisible people who are just scraping by in life. The people who don't have homes with a spare room, a little nest egg we can dip into to travel to each other. But it's not even really about travel costs. It's just about her not getting the fucking CARE SHE DESERVES!

If I can't be with her .... if it's not meant to be that I can say my goodbyes in person, I just want her to WANT to have a chance! I want the government to bloody CARE! I'm not ready to say good bye. I suppose no one ever is. I have always loved my solitude, but I don't think I've ever felt this lonely in my life.

I can't see the monitor. Thanks for letting me vent.

English doesn't just borrow words from other languages - it follows them down dark alleys, beats them over the head with empty beer bottles, and rummages through their pockets for loose grammar.
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19-03-2014, 06:17 AM
RE: Losing a Child to Cancer
(18-03-2014 11:49 PM)Rhaevyn Hart Wrote:  I am sitting here in tears. I don't know where to begin. I am choosing this forum, this group of people... this family, to pour my heart out to. I don't want to do this on Facebook or anywhere else. But if I don't talk about it I think I'll lose my mind.

I have two beautiful daughters. My oldest is 27. My youngest is 26, and when she was 23 she was diagnosed with Chronic Myelogenous Leukemia. How the hell does a child get cancer?! She's been on the treadmill of state medical, on again, off again doctors and finally found a good oncologist in Phoenix (when we all lived there) who put her on Gleevec. All seemed hopeful.

Since then we have all had our own little personal trials and tragedies. I had lost my job, apartment, car... I ended up homeless. Through the VA and some charities I was placed in transitional house and because of my Fibromyalgia and a few other medical issues, I waited out my year in that Hilton for the Homeless while my lawyer helped me get disability. I then took my backpay and got the hell out of Arizona (I hated it there). Since then my youngest moved to California to live with two of her cousins.

She has been going through the bureaucratic bullshit of transferring her Medicaid to Medical and the red tape of "waiting" to get back on the medication. In the meantime, she is dying. Because she doesn't want to "worry me" I don't get all the information - I don't know the details of what's actually happening. She talks to me and just glosses over it, and stops me from pushing for answers such as "are you taking your meds?" or "why are they dicking you around!" etc.

I spoke with her sister today and she confided in me that she couldn't keep it from me anymore. Her little sister is not doing well. She's already relaying her final wishes, who she wants there at "that time" and who is not welcome. This fucking SUCKS! I am up in Oregon. I'm on disability income. My other daughter is in Arizona. Why is she not being provided her medications? How the HELL do you put someone with a fatal condition on a waiting list for their meds? What's going on? Why can't I ask without being patted on the head? Why can I not save her?

All I can think of is storming the Governor's Mansion in Sacramento, picketing them, YELLING AT THEM!! My daughter is fucking dying and you don't give a shit! I'm reading the message loud and clear: YOU CAN'T AFFORD THE CARE AND MEDS WITHOUT OUR HANDOUTS SO YOU'RE NOT ALLOWED TO LIVE. My heart is being torn to shreds.

She does have family around her, but I need to be there for her, with her. I need to bring my Irish ire to her healthcare providers and light a fire under some asses. I need to get to the bottom of this. But she doesn't want me to. I think she wants to go. I don't know how to accept this. How do I let my baby go when she could have a chance at a near normal lifespan with the right care? And now I'm doing exactly what she didn't want - I'm crying my heart out. I'm emotionally devastated.

I don't think there's a person here who wouldn't do ANYTHING they could to save their child. And yet, I feel completely helpless. I just want to be with her. I want to spend all the time that's left with her. But we're just statistics. We're just the invisible people who are just scraping by in life. The people who don't have homes with a spare room, a little nest egg we can dip into to travel to each other. But it's not even really about travel costs. It's just about her not getting the fucking CARE SHE DESERVES!

If I can't be with her .... if it's not meant to be that I can say my goodbyes in person, I just want her to WANT to have a chance! I want the government to bloody CARE! I'm not ready to say good bye. I suppose no one ever is. I have always loved my solitude, but I don't think I've ever felt this lonely in my life.

I can't see the monitor. Thanks for letting me vent.

I understand that feeling of utter powerlessness. I can relate because I went through this with my husband - although he had good medical insurance and had all that available. With cancer, there comes a time when one has to realize that the end is near, and one can't do a damn thing about it. It sucks. It hurts like crazy. It's hard to accept.

You say you are not being informed properly - so it's hard for you to know what is really going on. It may just be that the meds wouldn't help anymore anyway. Cancer is a very nasty, nasty thing. Just when you think you got it tamed, it turns on you.

Your daughter needs you now - she needs the soft, supportive, palliative mom, not the fiery defender. She needs the mom that will rock her gently to sleep, not the mom that fights the demons for her.

I know you are angry, I was so angry at times I could have exploded. I couldn't help but focus on a mistake made in his last, short visit to a local hospital. But that is not helpful at the time, the only helpful thing for your daughter now is love and care and support. She wants peace above all things now. When you are about to leave this life, it is most desirable that it be peaceful.

As hard as this is, she needs you to help her pass knowing that all is ok, you can't help her live anymore.

The anger - it will come back full force soon enough, and many people take up a cause after they lose someone to unjust conditions.

But now is the time to cater to your daughter only, your anger be damned, her wishes are most important, it is crucial for both you and her that you shelter her from anger and negativity. It's not the time for her to deal with problems, it's time for both of you to let go, there is no other choice. And it sucks big time.

I wish I had something I could say that would make it all right, but I don't. It's not ok, it's not all right, it's not fair. It sucks big time. And now you have the huge task of ignoring all that and showing calm love to your daughter, to give her that peaceful, loved exit we all want when the time comes....

I wish I could send you strength to face all that....

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19-03-2014, 06:38 AM
RE: Losing a Child to Cancer
Thank you Dom. I completely agree with all you said. The thing is, I CAN'T be with her. She's in North Hollywood, I'm in Portland. She does have her cousins that she lives with, and she is working (she's like that, just forges ahead). But the thing is, she has CML, which is pretty much THE number one most treatable cancer. The point is that if she was able to receive CONSISTENT care and medication she could live a pretty normal life. So my frustration is our geographical separation, the knowledge that for the most part I think she WANTS to let go, and that if there wasn't so much red tape, medical delay, etc., she would be on the meds and continuing her life. And... that I really can't take any action, because as you said - and as I already know - I can't do a damn thing. It's her choice. But as her mother how can I NOT want her to live?

I've been up all night. And I've just been sitting here listening to more of Seth's podcasts (I've got a lot of them to catch up to the present). And I've been thinking, not surprisingly. I just wish I could be there with her. If she is determined to let go, then I want to spend what time I can with her. But it's just not possible for us, and I think that hurts more than anything else in this horrible situation.

Thanks for taking the time to respond, I truly appreciate it.

English doesn't just borrow words from other languages - it follows them down dark alleys, beats them over the head with empty beer bottles, and rummages through their pockets for loose grammar.
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19-03-2014, 06:56 AM
RE: Losing a Child to Cancer
(19-03-2014 06:38 AM)Rhaevyn Hart Wrote:  Thank you Dom. I completely agree with all you said. The thing is, I CAN'T be with her. She's in North Hollywood, I'm in Portland. She does have her cousins that she lives with, and she is working (she's like that, just forges ahead). But the thing is, she has CML, which is pretty much THE number one most treatable cancer. The point is that if she was able to receive CONSISTENT care and medication she could live a pretty normal life. So my frustration is our geographical separation, the knowledge that for the most part I think she WANTS to let go, and that if there wasn't so much red tape, medical delay, etc., she would be on the meds and continuing her life. And... that I really can't take any action, because as you said - and as I already know - I can't do a damn thing. It's her choice. But as her mother how can I NOT want her to live?

I've been up all night. And I've just been sitting here listening to more of Seth's podcasts (I've got a lot of them to catch up to the present). And I've been thinking, not surprisingly. I just wish I could be there with her. If she is determined to let go, then I want to spend what time I can with her. But it's just not possible for us, and I think that hurts more than anything else in this horrible situation.

Thanks for taking the time to respond, I truly appreciate it.


Oh, so I misunderstood.

Try posting here: http://www.thethinkingatheist.com/forum/...cal-advice

We have two docs on board here, they may be able to point you in the right direction.

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22-03-2014, 07:49 AM
RE: Losing a Child to Cancer
Welcome my brotha. Im sorry for your loss. Keep strong man. Hug Keep strong.

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22-03-2014, 10:13 AM
RE: Losing a Child to Cancer
(22-03-2014 07:49 AM)ThePaleolithicFreethinker Wrote:  Welcome my brotha. Im sorry for your loss. Keep strong man. Hug Keep strong.

Umm, actually I'm a lady. And she's still alive. But I do appreciate the sentiment. They finally sorted out their bullshit and she's back on her meds. She's having a bone marrow biopsy next week and we're holding our breath that she hasn't progressed to the next stage. So, good news, as far as I'm concerned.

It's just so frustrating not being able to be there with her as she goes through all of this.

English doesn't just borrow words from other languages - it follows them down dark alleys, beats them over the head with empty beer bottles, and rummages through their pockets for loose grammar.
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22-03-2014, 10:42 AM
RE: Losing a Child to Cancer
(22-03-2014 10:13 AM)Rhaevyn Hart Wrote:  
(22-03-2014 07:49 AM)ThePaleolithicFreethinker Wrote:  Welcome my brotha. Im sorry for your loss. Keep strong man. Hug Keep strong.

Umm, actually I'm a lady. And she's still alive. But I do appreciate the sentiment. They finally sorted out their bullshit and she's back on her meds. She's having a bone marrow biopsy next week and we're holding our breath that she hasn't progressed to the next stage. So, good news, as far as I'm concerned.

It's just so frustrating not being able to be there with her as she goes through all of this.

Oh sorry sista, my mistake. Its good she is alive, but now I feel like an ass. Again sorryConfused

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22-03-2014, 11:43 AM (This post was last modified: 22-03-2014 12:14 PM by Losty.)
RE: Losing a Child to Cancer
(22-03-2014 10:13 AM)Rhaevyn Hart Wrote:  They finally sorted out their bullshit and she's back on her meds. She's having a bone marrow biopsy next week and we're holding our breath that she hasn't progressed to the next stage. So, good news, as far as I'm concerned.

It's just so frustrating not being able to be there with her as she goes through all of this.

I am glad to hear this bit of good news. I can't imagine how hard it must be to not be able to be with her. This is something that I have no experience with so I will leave Dom to the advice, she's great!
I just wanted to give you some hugs Hug Hug Hug
I'm sorry you're going through this Heart

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22-03-2014, 11:58 AM (This post was last modified: 22-03-2014 12:10 PM by Baruch.)
RE: Losing a Child to Cancer
(18-03-2014 11:49 PM)Rhaevyn Hart Wrote:  I am sitting here in tears. I don't know where to begin. I am choosing this forum, this group of people... this family, to pour my heart out to. I don't want to do this on Facebook or anywhere else. But if I don't talk about it I think I'll lose my mind.

I have two beautiful daughters. My oldest is 27. My youngest is 26, and when she was 23 she was diagnosed with Chronic Myelogenous Leukemia. How the hell does a child get cancer?! She's been on the treadmill of state medical, on again, off again doctors and finally found a good oncologist in Phoenix (when we all lived there) who put her on Gleevec. All seemed hopeful.

Since then we have all had our own little personal trials and tragedies. I had lost my job, apartment, car... I ended up homeless. Through the VA and some charities I was placed in transitional house and because of my Fibromyalgia and a few other medical issues, I waited out my year in that Hilton for the Homeless while my lawyer helped me get disability. I then took my backpay and got the hell out of Arizona (I hated it there). Since then my youngest moved to California to live with two of her cousins.

She has been going through the bureaucratic bullshit of transferring her Medicaid to Medical and the red tape of "waiting" to get back on the medication. In the meantime, she is dying. Because she doesn't want to "worry me" I don't get all the information - I don't know the details of what's actually happening. She talks to me and just glosses over it, and stops me from pushing for answers such as "are you taking your meds?" or "why are they dicking you around!" etc.

I spoke with her sister today and she confided in me that she couldn't keep it from me anymore. Her little sister is not doing well. She's already relaying her final wishes, who she wants there at "that time" and who is not welcome. This fucking SUCKS! I am up in Oregon. I'm on disability income. My other daughter is in Arizona. Why is she not being provided her medications? How the HELL do you put someone with a fatal condition on a waiting list for their meds? What's going on? Why can't I ask without being patted on the head? Why can I not save her?

All I can think of is storming the Governor's Mansion in Sacramento, picketing them, YELLING AT THEM!! My daughter is fucking dying and you don't give a shit! I'm reading the message loud and clear: YOU CAN'T AFFORD THE CARE AND MEDS WITHOUT OUR HANDOUTS SO YOU'RE NOT ALLOWED TO LIVE. My heart is being torn to shreds.

She does have family around her, but I need to be there for her, with her. I need to bring my Irish ire to her healthcare providers and light a fire under some asses. I need to get to the bottom of this. But she doesn't want me to. I think she wants to go. I don't know how to accept this. How do I let my baby go when she could have a chance at a near normal lifespan with the right care? And now I'm doing exactly what she didn't want - I'm crying my heart out. I'm emotionally devastated.

I don't think there's a person here who wouldn't do ANYTHING they could to save their child. And yet, I feel completely helpless. I just want to be with her. I want to spend all the time that's left with her. But we're just statistics. We're just the invisible people who are just scraping by in life. The people who don't have homes with a spare room, a little nest egg we can dip into to travel to each other. But it's not even really about travel costs. It's just about her not getting the fucking CARE SHE DESERVES!

If I can't be with her .... if it's not meant to be that I can say my goodbyes in person, I just want her to WANT to have a chance! I want the government to bloody CARE! I'm not ready to say good bye. I suppose no one ever is. I have always loved my solitude, but I don't think I've ever felt this lonely in my life.

I can't see the monitor. Thanks for letting me vent.

Your post has actually made me appreciate the UK NHS health system and how people take this for granted and complain in the UK.
I am a cancer specialist and anyone in the UK with CML will get Glivec/imatinib free of charge - even back to 2003.
How is she actually doing on Imatinib ?
Is the imatinib tolerated well and CML blasts number controlled ?

I'm not clear from your post for how long she has taken Imatinib or if she was taking it and no longer has access.
This is really quite shocking because imatinib is one of the most successful medications for CML and I know people still taking it from 10 years ago who would have certainly died (other treatments such as inteferons are really quite poor in comparison with more side effects for most people.)

Untreated CML progresses into full blown Leukemia AML blast crisis.

Are you not able to get Imatinib ? When does it become generic in the US - prices should fall ? I know in Canada Imatinib is available generic and I believe from 2015 will be generic worldwide ???

If imatinib no longer works (sometimes in some patients resistance can occur) or has side effects which your daughter cannot tolerate then there are two other successful treatments - Dasatinib & Nilotonib although more expensive and much longer patents. In some respects Dasatinib & Nilotinib can be more effective - but if Imatinib works there is not much advantage swapping.

Currently it is unknown how long imatinib/dasatinib/nilotinib will work for - as I said I know people living normal lives after 10 years of taking these with CML. The effectiveness does depend on the exact genetic malfunctioning and there are different types.
It may be the case that these treatments will work for a normal life span - we dont know.
Some tests in France suggest that some people can come off Imatinib and the CML remains controlled. This IS NOT policy in the UK. We keep people on these drugs either until they no longer work or if they have side effects they cannot tolerate.
The end stage full blown AML from CML is very difficult to treat and often fatal - so the UK guidelines are to use maintenance Imatinib (or similar) even during complete CML remission. This is because technically Imatinib is not a cure but works by blocking what are called tyrosine kinase pathways involved in the rapid cell division very specifically to what causes CML. (not all cell division - otherwise it would be more like standard chemotherapy and imatinib is not technically 'chemotherapy' - we classify it as a 'TKI' Tyrosine Kinase Inhibitor.

Hope you can sort out the bureaucracy - quite scary !

The most important thing is keeping check on the blood counts for blasts or bone marrow biopsies. People may "feel good" and prematurely stop taking the imatinib and not realize what is going on within their bone marrow/blood results. Symptoms often develop only once a critical threshold of CML is present causing anemia, bleeding, infection and other symptoms of CML. Symptoms alone is NOT a good measure for success.

Not sure how much interest you take in the research but stopping Imatinib CAN BE SAFE FOR SOME groups of CML patients *IF* they have a good MOLECULAR response (not symptoms free response) .
http://bloodjournal.hematologylibrary.or...-02-483750
Hope this helps.

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22-03-2014, 06:09 PM
RE: Losing a Child to Cancer
As your post touched me I really wanted to say something that would maybe help in this time of despair but in reality I really don't know what to say to you.
I'm a mother myself and don't know what it would be like to go through this type of situation. The only thing I do know is that is would be totally heartbreaking.
So i will just give you this Hug and hope like hell that everything will be okay.

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