Boy cancer can be difficult...

**petep** · 03-05-09, 10:32 AM

I know this is a tc forum, but I needed a place to share...I just found out a co-workers wife is being moved to hospice....

Four years ago I hired someone from MN to run our paper company. I knew right away he was the one to hire from the moment I met him. His wife and he had always dreamed of relocating to fla...at the time they had a 15 year old daughter and 3 year old boy...

He gave his one month notice up in MN...a week before he was scheduled to start, he phoned from the hospital - his wife was diagnosed with terminal ovarian cancer...maybe 3months to live...two hospitals, including mayo over the two weeks, said there was nothing to be done...they suggested she be moved to hospice right away.

I told him I'd wait it out...let them decide what they wanted to do and I'd support whatever decision he made, whenever he made it...ultimately they decided they would come to fla, even if they could only get a few walks in on the beach before she passed.

As it happened, they found an oncologist here and there was some hope...she began chemo...they moved in oct 2005...and in a strange twist of fate, I was diagnosed in dec 2005 and chemo for me during 2006....I would correspond with his wife about some of the joys of chemo, and things we found to alleviate some of the effects....we had them over for dinner - me bald, her in a wig....we laughed a lot...

so she has lived the last several years, in an out of surgeries, non-stop chemo...got to see her son's first day of school, her daughter's prom, graduate high school....so some bright moments. She even has a website:

http://kimberlysjournal.com/index.html

A few weeks ago she developed a new case of cancer - breast cancer...and things got worse recently...

This am the docs called my co-worker and let him know she will not get better and now he faces hospice....we chatted about this a few minutes ago - the choices he now must face...at home hospice, away from home hospice....what's best for her, the kids etc.

These are decisions you wish no one has to ever make.

Anyway, just brutal to think about what a spouse and kids must face prematurely...very much a feeling of helplessness.

Thanks all -

Pete

**Aegletes** · 03-05-09, 10:57 AM

I have a coworker, a man I respect a great deal, whose wife was diagnosed last year with metastatic myeloma. She's hoping for five to ten years before she has to face hospice care as well. My heart goes out to people in these situations. They need all the support we can give them.

**Karen** · 03-05-09, 11:48 AM

Pete,
I stared to look at Kimberly's Journal and realized I don't have enough tissues in my office. But read it I will. She sounds like an absolutely amazing woman with insights and strength to inspire.

I remember when you posted about her a while back after you offered her husband the job. I'm glad she was able to get more years of life than anticipated, and I pray for and her family as they continue this journey. You're a good friend to them....

**boyce** · 03-05-09, 12:23 PM

After reading this...it confirms that I am a total wuss.

THAT is strength!

Prayers for them Pete...and we're thankful that God blessed you with these people. Thanks for sharing her story with us.

**MRMRSU** · 03-05-09, 04:15 PM

...and cancer is an unrelenting, indiscriminate, unyielding cheat. But the human spirit can rival cancer's force as Kimberly has shown, and be equally unrelenting in her will to live, indiscriminate in the treatments she has had to follow, and unyielding in her efforts to love her family in the short amount of time that's been given her. It's a beautiful website. I particularly like her poems. I hope that she will be able to spend her time surrounded by all that she loves.

**Paul54** · 03-06-09, 08:23 AM

If anyone had told me two years ago I would get cancer and then be considered "one of the lucky ones", I would have thought they were crazy or drunk. But I know now I was lucky in the sense I am most likely a long-time survivor.

Nobody will ever mistake me for a professional cancer counselor, but I find it much easier to talk with people who either have or had more serious fights with cancer. It's amazing to me that so many people actually find relief in just opening up and talking about cancer and their experience with anybody who has been there, done that even to minor levels. Perhaps our ability to be just good listeners is our small gift, our silver lining around the dark cloud. For me, this new "skill" came at a time when so many relatives and co-workers have been diagnosed, some winning battles, a few losing or lost.

If I can give anybody a few moments of comfort, an ear to listen, a shoulder to cry on, then I am lucky. It's what I would want and be very thankful to get.

**dadmo** · 03-06-09, 08:58 AM

Here's an email I got from Nancy this morning. I HATE THIS DISEASE!!!!!

Hi there....
How was spin??
Just talked to Roberta (here at school..) her granddaughter is the
one I told you is so sick...well they need platelets....thought you'd be
interested in going with me....we can make a "date" of it.
I'll call you later.
.............................me :-)

This poor little girls is 2 1/2 cancer in her liver and bottom of both lungs.....rough shape...she's so weak she can't walk....got her home yesterday...will start chemo next week.....
a tough one.!!!!!!

**Aegean** · 03-06-09, 09:22 AM

Originally Posted by dadmo

Here's an email I got from Nancy and I this morning. I HATE THIS DISEASE!!!!!

Hi there....
How was spin??
Just talked to Roberta (here at school..) her granddaughter is the
one I told you is so sick...well they need platelets....thought you'd be
interested in going with me....we can make a "date" of it.
I'll call you later.
.............................me :-)

This poor little girls is 2 1/2 cancer in her liver and bottom of both lungs.....rough shape...she's so weak she can't walk....got her home yesterday...will start chemo next week.....
a tough one.!!!!!!

When it comes to kids, there are no eloquant words, quotes or phrases other than "it sucks" and this is really the one time when "it's not fair" is a fair statement.

I just attended a charity dinner for kids with diseases that are under funded due to them being so rare. It was started by one of the Dads at my company that lost two of his kids to a rare blood disorder a few years ago. This was the second year I attended and both my wife and I were teary eyed during the video presentation.

All the best to the little one and hopefully the ignorance of youth will give her the strength to fight.

Zsolt

**Aegletes** · 03-06-09, 10:02 AM

Originally Posted by Paul54

(...)If I can give anybody a few moments of comfort, an ear to listen, a shoulder to cry on, then I am lucky. It's what I would want and be very thankful to get.

This is something I yearn to do, to give back to others by just listening. The colleague of mine whom I mentioned earlier is having to watch his wife fight just to prolong her existence, but it's a fight she's willing to take on. While "all" I can do is listen, I know that it helps him to know that he and his wife are not alone. Just a few words of concern, an hour or two of just listening, can do wonders to life somebody's spirits and dispel the feeling of isolation that all cancer patients feel at some stage or another. As survivors, I feel we have a special responsibility to offer this type of support and help.

**Aegletes** · 03-06-09, 10:09 AM

Originally Posted by dadmo

(...)This poor little girls is 2 1/2 cancer in her liver and bottom of both lungs.....rough shape...she's so weak she can't walk....got her home yesterday...will start chemo next week.....
a tough one.!!!!!!

This is the sort of situation I can't imagine anyone witnessing dry-eyed. It's bad enough for an adult to confront this damn disease. It's nothing short of horrifying to think of a child (2 1/2 years old!) afflicted with this.

**Already Bald** · 03-06-09, 10:45 AM

For this, you don't need Low T levels to cry. And cry we will.

**dadmo** · 03-06-09, 11:30 AM

The little girl has hepatoblastoma. She needs A+ blood and I'm a match so sometime next week I'll be making a donation.

**TCLEFT** · 03-06-09, 12:59 PM

Originally Posted by dadmo

The little girl has hepatoblastoma. She needs A+ blood and I'm a match so sometime next week I'll be making a donation.

I'm not a universal donor (or if I can even donate now), but I am O+. If I remember correctly, that's a compatable type for her. Let me know if I can help.
ML,
Mark

**Already Bald** · 03-06-09, 01:50 PM

Originally Posted by TCLEFT

(or if I can even donate now)

I think you are out for 5 years post chemo, Mark.
Maybe more??
Sadly, when I renewed my driver license last, I had to remove "ORGAN DONOR".

**TCLEFT** · 03-06-09, 01:57 PM

Originally Posted by Already Bald

I think you are out for 5 years post chemo, Mark.
Maybe more??
Sadly, when I renewed my driver license last, I had to remove "ORGAN DONOR".

That's what I thought.

**Karen** · 03-06-09, 04:02 PM

Don't know if it still works this way, but in general you don't have to be the match to donate...your blood donation can be credited against the account of the person you are donating for so it will alleviate some of the financial aspects for the family.

Of course any and all blood donations are needed and will make a differrence in somebody's life, cancer warriors and burn victims are, I think, those with the greatest need.

**Fish** · 03-07-09, 10:25 PM

Does anyone know the timeframe for being deferred as a blood/organ donor after a diagnosis of cancer and/or chemo. I asked a red cross rep at a work sponsored health fair about 2 years ago, and she couldn't give me a definitive answer.

**Paul54** · 03-08-09, 05:38 AM

Fish,
I was curious about the blood and organ donor rules and checked around. I found several inconsistencies even after emailing national and local programs (Red Cross, organ donor organizations, etc.)

In a nutshell, the national Red Cross and some state chapters say that you can donate blood (and I presume platlets) one year after last treatment, being surgery, chemo or radiation. Some states say 2 years, others 5, and I'm sure some uninformed reps would probably say never. After checking with Rhode Island twice, I resumed blood donations 12 months post I/O.

The organ donor rules are even less clear. Most of what I've found implies that it's up to the organ harvest and transplant teams to decide. I've left the organ donor indicator on my drivers license but stuck a small note on the back that briefly explains my cancer and treatment history. If nothing else, it might get me out of a speeding ticket someday

.

Since I do donate blood every 8 weeks or so, last time 3 weeks ago, and am A+, I'm going to look into transfering "credits" from RI to New Jersey to help that precious child.

**Aegean** · 03-08-09, 06:40 AM

...and Fish, don't come up North here to the frozen tundra to donate either. Our Red Cross at the last blood drive about 6 weeks ago told us that it was a lifetime ban. My wife asked tongue-in-cheek if that included co-survivors.

**dadmo** · 03-10-09, 06:04 AM

I spoke with Jason about donating blood now that he's appraoching the 5 year mark. His response surprised me. He doesn't think anyone should get his blood because of the treatments he had. He understands that it's allowed but he said he just wouldn't feel right. Anyone else feel like that?

**Paul54** · 03-10-09, 06:46 AM

Originally Posted by dadmo

I spoke with Jason about donating blood now that he's appraoching the 5 year mark. His response surprised me. He doesn't think anyone should get his blood because of the treatments he had. He understands that it's allowed but he said he just wouldn't feel right. Anyone else feel like that?

Even though I didn't need any treatment post-I/O, I certainly felt some misgivings about donating. The thing that bumped me back to donating was that there are certain times when the blood supply here goes down to critically low levels, at which point I get phone calls and emails asking me to donate ASAP. I spoke with the driector of the RI blood center, not once but twice, to make sure she understood my history. It still worries me a little bit, but since they can't get blood from rocks, I just gotta do this.

**Aegean** · 03-10-09, 07:55 AM

I had a client that passed away last year from cancer in an infected liver after transplant. I think that is a very different circumstance as the cells would be living or growing in the organ, where as the blood stream, if I understand correctly , is a much more hostile environment.

**Keith 123** · 03-10-09, 03:40 PM

The other day the local news channel was hosting a blood drive and had a phone number to call during the evening's broadcast the day before. I called to ask about this, and the woman had the physician in charge of it call me back. I told him my history (4xBEP and RPLND) and he said I just had to wait for 1 year post-chemo before I could donate.

I've never donated before and used the (poor) excuse that I just didn't like to be stuck with needles (still don't) but I'm used to it now so feel I should do what I can to help others out.

I still have the little heart on my driver's license also. Perhaps my heart or kidneys won't be ideal because of the chemo, but I've still got good skin, eyes, tendons, etc that someone could make use of.

**boyce** · 03-11-09, 10:06 PM

Hey Dadmo,

I feel EXACTLY the same way.

Lord knows we need more blood donors, and thankfully there was blood avaiable for my transfusion....but I won't be sharing any of mine.

I know it's medically safe, but I feel like its' "poisoned" for lack of a better word.

Ignorant? Maybe so. But I couldn't stand the thought of someone else getting this blood.

**MRMRSU** · 03-12-09, 02:04 AM

Originally Posted by Keith 123

Perhaps my heart or kidneys won't be ideal because of the chemo, but I've still got good skin, eyes, tendons, etc that someone could make use of.

And you say your HEART won't be ideal???

I beg to differ...the physical aspect of your heart may not be ideal but the goodness behind it sure makes all the difference. Good for you, Keith!

**dadmo** · 03-12-09, 01:12 PM

Amazingly the people at Hackensack Universitry Hospital are not able to accept donations of blood from remote locations.??. If anyone is curious about this the number is 201-996-4819 and the person to speak to is Nadia with the donations being made on behalf of Sylvie.

I will be giving blood next Thursday and will certainly dig into this a bit more.

**Smartie** · 03-12-09, 03:11 PM

I used to give blood, but here in the UK cancer survivors are banned from donating blood for life. Because of that, I've never had to consider how I'd feel about someone getting my blood. I think I would feel a little reticent about someone getting my blood, but if I was assured it is safe and as I know blood is needed, I think I would donate.

**Aegean** · 03-12-09, 08:39 PM

but here in the UK cancer survivors are banned from donating blood for life.

Must be a Commonwealth thing as same here in Canada...

**petep** · 03-22-09, 08:12 AM

hi all,

kimberly passed away at 1am this morning after battling for almost 4 years. I'm fortunate that I was able to spend some time with her, and her family, at hospice during the past week.

I appreciate that I was able to post her story on this forum; to be able to share it with all of you.

Early on I thought that perhaps she would defy all odds and survive, but I suppose it was not meant to be.

Please keep her husband and kids in your thoughts and prayers...it will most likely be a very difficult time for them.

pete

pete

**Smartie** · 03-22-09, 11:44 AM

So sorry to hear this news, Pete.

Thank you for sharing Kimberly's journal with us. I found her personality really came across in the journal, and I found it quite profound in its simplicity.

**Aegean** · 03-22-09, 05:52 PM

Pete,

Condolences to her family. My wife and I were really touched by her journal.

Thank you for sharing her story.

Best,

Zsolt

**boyce** · 03-22-09, 07:11 PM

Praying now for her and for them Pete.

Another unecessary loss to this damn freakin disease.

#^#&^*@&*(#&*@&*(@&^*!!

**dadmo** · 03-23-09, 06:34 AM

I'm sorry Pete. All are precious but some hit harder then others. I can tell this on is rough. If you can get a picture of her I'll ride in her honor one day this summer.

**Already Bald** · 03-23-09, 06:43 AM

Originally Posted by petep

hi all,

kimberly passed away at 1am this morning after battling for almost 4 years. I'm fortunate that I was able to spend some time with her, and her family, at hospice during the past week.

I appreciate that I was able to post her story on this forum; to be able to share it with all of you.

Early on I thought that perhaps she would defy all odds and survive, but I suppose it was not meant to be.

Please keep her husband and kids in your thoughts and prayers...it will most likely be a very difficult time for them.

pete

pete

I'm sorry to read this, Pete.
You are an extrodinary man, and I'm sure Kimberly's family is grateful that you are part of their lives.

**Aegletes** · 03-23-09, 06:54 AM

I'm so very sorry, Pete. It's so such rich life is not lost that we work to raise resources and awareness to fight this disease. Her journal gave a glimpse of just what is lost when a life is lost. It's too high a price.

**TCLEFT** · 03-23-09, 07:14 AM

Sincerest Heartfelt Condolences. Words are never enough. I'm Sorry Pete.
Much Love,
Mark

**Margaret** · 03-23-09, 08:24 AM

I have been following too Pete....just from the backroom. My friend Cynthia has the most beautiful blog and she just lost her sister to cancer a few weeks ago and her husband is also fighting the big C. It is all so painful and my heart goes out to Kimberly's family.

**Karen** · 03-23-09, 08:52 AM

I'm so sorry, Pete. Condolences to Kimberly's family. Her journal was so beautiful, thank you for sharing her with us, and I wish the outcome could have been different.

**Mrs Moggi** · 03-23-09, 12:02 PM

Thank you for sharing her story with us Pete. She and her family will be in my thoughts.

**suns_mum** · 03-23-09, 06:23 PM

I just read through all the posts and want to say I am sorry for your loss- but in the loss there is gain too right!?. It sounds as though a friendship was formed out of adversity and a common evil thread. I hate cancer!!!! but God is good---cancer is evil----this family and all of you are in my prayers as I am learning to appreciate the support that can be found through this is is invaluable right now. I love reading how you lift each other up.

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