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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:25 PM
Original message
I wanted to share the story I sent to Stempac...
Our story is the typical story of dreams, hopes and aspirations. My name is Carole Allridge and my husband, Wayne, and I met in 1998, married in 1999, bought our first house in 2000, and then adopted our son from Ukraine in 2002. Things for us were exactly what a little girl would dream her future to be like, though I took a lot of lumps to achieve this. It was in November 2002, six short months after the adoption of our son, that we were given a diagnosis of cancer. Yes, this wonderful husband and terrific father was told he had Hodgkin’s Disease. We began researching and learned that Hodgkin’s Disease has a very high cure rate. We weren’t worried... he could beat this and everything would be alright. Nothing would stand in our way!

Wayne went through many months of chemotherapy and follow-up radiation treatments and continued to make it to work the entire time . When his treatment was completed, we took our first family vacation. Little did we know then that this would be our only family vacation. Upon our return, Wayne went for his follow-up PET and CT Scans only to discover that he still had the dreaded disease. But, it was alright. Hodgkin’s was a curable disease and we together were determined to beat it and we moved forward.

Wayne underwent salvage chemotherapy and arrangements were made for him to have an autologous stem cell transplant. He had to travel to and from the nearest facility, which was out of town, for testing and was hospitalized in October 2003 for his transplant. We had high hopes. The transplant was relatively smooth and he came home just in time to celebrate our son’s third birthday. It must be said at this time that our son has specials needs because he was born with a birth defect. We knew that when we adopted him. Of course, what we didn’t know was that Wayne would be suffering from cancer while our son endured four surgeries. But, it was alright, this cancer was beatable!

A couple of months after his transplant he was hospitalized on two separate occasions in November and December of 2003 for pulmonary effusion. His lungs had been damaged by the radiation and he had developed radiation pneumonitis. Two surgeries and an oxygen machine later, he was back home and back at work. Things were going well, all things considered.

Wayne had his follow up PET and CT Scans in January 2004. We were so excited to learn that the cancer was in remission and we started to put our lives back together. We had made it through all of that and it was behind us! Sadly, we knew it was back just three months later when in April, Wayne once again felt that lump in his neck. We tried to remain hopeful that it was just scar tissue and off Wayne went for another PET and CT Scan. Our hopes were dashed when we learned that he was no longer in remission. That’s alright... there were still treatment options. Time to move forward again.

The next step, an analogous “donor” transplant. The transplant center and the National Bone Marrow Donor Registry searched all the databases in the world (of which there are many), and there was no match to be found and, this included cord blood. So, off we go to the cancer research hospital to find some way to keep his disease in check while we waited for a suitable donor. He went through a week of tests and came home. We just knew a donor would come along! We didn’t know why this was happening to us, but we knew that God had a reason.

A couple of days after arriving home, Wayne thought he was getting a cold and went to see his oncologist. His breathing was labored, but that wasn’t unusual; he just had the flu. His oxygen saturation levels were so low that they rushed him via ambulance to the hospital which was only one block away and he was admitted to the ICU. The doctor called me at my office; have I mentioned I worked full-time through all of this? He said I need to get to the hospital because they were going to need to sedate Wayne and intubate him and they needed my signature. So, I left work and made my way to the hospital. Wayne had on an oxygen mask but seemed alright, but it was clear that he was not himself. He was highly agitated. They began running tests and he was diagnosed with bacterial pneumonia and was in septic shock.

Well, Wayne never left ICU. For three weeks he was intubated and sedated. During this time, we all visited him day in and day out. His family came from 1,200 miles away to be at his side. The nurses were able to bring him out of sedation for small periods of time and he was able understand us and respond to yes or no questions by squeezing our hands. He turned 37 while he was hospitalized. After nearly three weeks, they were able to get him out of the septic stage, but they were unable to successfully wean him from the breathing machine. At about this time, we had to come to the realization that even if Wayne were to survive this, his quality of life would be horrible and we still had no cure for his cancer. His parents and I talked and I then went to his oncologist’s office. I knew that his oncologist would be honest with me.

When it all came down to it, everyone was in agreement that it might be best to let him go. I knew for certain that Wayne would never want to live that way because we had talked about it, obviously believing at the time that this decision would never need to be made. We spoke to the doctors and let them know our thoughts, but the decision was now Wayne’s. They brought him out of his sedation so he was lucid and our pastor and I went to his bedside. It was so hard for me to ask him if he wanted to go because I knew what the answer would be. He squeezed our pastor’s hand, but he wouldn’t squeeze mine. I had to forcefully tell him to squeeze my hand and he finally did. The decision was made. Wayne was removed him from the breathing machine and sedated. He was still breathing, and it was so obvious that he was ready because he had the most peaceful look on his face. By morning, his heart had stopped beating and he had passed peacefully away in his sleep. The date was November 8, 2004.

Wayne left behind a wife, his parents, his brother and other extended family. But the one person he cared for most in the world is the one person who still doesn’t fully understand why his daddy isn’t with us anymore and why he’s “way up high, in the sky” and that would be our four year old son Alexsei. As for myself, my life goes on as I have a child to raise, but I sure do miss my husband. Since I truly believe he watches over us and can hear me, I will say, “I love you, babe and we’ll all be together again one day!”

We already know that Hodgkin’s Disease is curable through the use of stem cells. It is my desire to never see another family go through what we did when there is a viable cure available, thus my plea that we expand stem-cell research. I will never know why God chose our family. It might just be that I’m supposed to share this story so that it will touch someone enough to make some tough choices designed to make a difference in those suffering from diseases we know we can cure and hope for additional treatment options for other diseases and ailments.

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murielm99 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:34 PM
Response to Original message
1. Thank you.
I am sorry for you loss and all the suffering your husband and family have endured. May God be with you.

I hope that stories like yours will help change things.

Your son is beautiful. What kind of surgery did he have? It looks like the outcomes were successful.
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:55 PM
Response to Reply #1
6. Alexsei was born with
a bilateral cleft lip and palate and when you add 18 months of no treatment in Ukraine, it was a bear when we got him home.

Doesn't he have a great plastic surgeon?!? :D
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murielm99 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:25 PM
Response to Reply #6
9. I suspected that, but it is only because I have seen so many
cleft palate kids.

My son was born with a cleft palate. But in his case, he had no uvula and his soft palate was cleft. he did not have a cleft lip or nose.

The surgery was still awful. It was delicate, and his recovery time was difficult. But he is fine now, at 23 years old.

I saw many kids at his clinic and in the hospital that had very good outcomes. Only someone like me can detect the repairs and minute surgical scars.

I spent so much extra time sitting with my son during his recoveries that he learned to read early. I did not actually teach him, but we read many books and played a lot of games. He could read before he was four.
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 03:48 PM
Response to Reply #9
13. He gets a nose job next month...
I'm actually going to miss his little, flat, flared, nose!
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in_cog_ni_to Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:41 PM
Response to Original message
2. That is a very powerful story.
I'm so sorry for your loss. :hug:

How ANYONE could hear your story and be against stem-cell research, is beyond me. Thank you for telling your painful story with the hope to help others like your husband. It couldn't have been easy for you.


Your little boy is absolutely adorable!
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quinnox Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:43 PM
Response to Original message
3. recommended
Edited on Wed Jul-27-05 01:43 PM by quinnox
Thank you for sharing that. Good luck to you
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babylonsister Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:46 PM
Response to Original message
4. What a long, tough journey, catabryna.
You and your son have my condolences. I'm going to nominate this so more people will read it and learn why pushing for stem cell research is so important. Thank you kindly.:hug:
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whosinpower Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 01:54 PM
Response to Original message
5. My heart goes out to you
I watched my sister die from cancer as well. Your story brought back painful memories - of hopes dashed, fear and sorrow.

She initially had non-hodgkins lymphoma. Non curable. She opted for a very experimental (at the time) stem cell transplant. It apparently worked - she was 2 months shy of the ultimate 5 year=cured check up when she felt rather flu ish.

It was not lymphoma - it was leukemia. Only answer was a bone marrow transplant. She fought against all odds to see her first grandson born and then the cancer - or the rejection/complications from the transplant coupled with infection took her.

I support stem cell research with all my heart. No one should have to watch their loved one die that way.
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 08:32 PM
Response to Reply #5
22. I'm so sorry to hear of your sister...
Leukemia was one of the potential side effects of Wayne's treatment. But, in order to live, some risks are worth taking. I'm so glad that she saw her grandson born.

All Wayne ever wanted in life was a family and he got a wife and a son. Sometimes, I think that is why God put us together. For him to fulfil my wish for the stability of a normal life and for me to fulfil his wish for a family.

Blessings to you.

Cat
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kaygore Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:02 PM
Response to Original message
7. We will fight on
but the regressive "right" cares only for slogans and NOT for real people.

God bless you and keep you and your beautiful son safe.
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IdaBriggs Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:23 PM
Response to Original message
8. Complete and utter heartfelt sympathies.....nt
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Rainbowreflect Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:32 PM
Response to Original message
10. Thank you for sharing such an intimate & painful story.
:hug:
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wicket Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:36 PM
Response to Original message
11. I'm incredibly sorry for your loss
How horrible :( He sounds like he was such a wonderful person :hug: I'm sure he is watching over you all.

My young cousin (he's 10) is about to succumb from an inoperable brain tumor. He wasn't even expected to make it through the weekend but he's still hanging on. It hurts so much and it's just not fair :(

PM me if you ever want to talk :hug:
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 08:28 PM
Response to Reply #11
21. Wicket
I just wanted to let you know that my son and I prayed for your cousin as I put him to down to sleep. I understand the pain and the helplessness you feel. I'm with you in spirit.

Cat
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wicket Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jul-29-05 02:13 PM
Response to Reply #21
29. Thank-you so much
It means a lot :hug:
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myrna minx Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 02:52 PM
Response to Original message
12. I am so sorry for your loss.
:cry:
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MissWaverly Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-27-05 09:06 PM
Response to Original message
14. welcome to DU
I am so sorry for your loss, it reminds me of what we went through with
Andy, the pancreatic cancer was like an incoming tide that no matter how
many defenses we built up, swept him away, and he was a good and very gentle man, sorely missed by his friends and family. I too hope that we
emerge out of the current darkness to once again be on the forefront of
stem cell research. I hope you will come back to DU, we can be rowdy,
mule headed and just plain stupid at times but we are good people, willing to help a friend and willing to take on the world if it is for
a good cause.

Miss Waverly
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 12:00 PM
Response to Reply #14
15. I followed Andy's story so closely...
and it absolutely broke my heart to see him go. At the same time, Andy's experience really opened up my soul and laid it bare on the ground. I can say, however, that the impact of Andy's death has, strangely enough, helped me recover in a personal way. My grief has diminished dramatically; which I'm sure is the only reason I could get this story written. It wasn't done without a lot of tears, but it also ended up being a very cathartic experience for me.

Thanks for the welcome, and I'll be sticking around.

Cat
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MissWaverly Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 04:14 PM
Response to Reply #15
17. I didn't make a big deal of this but
I did a drawing of Andy called Andy goes to Heaven, one of the doctor's
liked it, she wants to display it where her patients will see it, she treats AIDS patients and feels that it will be a comfort to them, so
it's nice to know that Andy is still helping others even now.



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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 04:26 PM
Response to Reply #17
18. Beautiful...
I know that look... different face, but I know the look; it's a peaceful, "everything is alright" look meant to comfort those left behind. Thank you for sharing it with me. I do hope that it brings comfort to others.

Cat
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MissWaverly Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 04:40 PM
Response to Reply #18
19. Thank you
the whole time I was working on it, I felt like Andy was behind me
saying "Is it done yet?"
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phusion Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 12:37 PM
Response to Original message
16. So sorry...
What a heartbreaking situation.

Thank you for sharing and welcome to DU. :grouphug:
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DanCa Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 04:52 PM
Response to Original message
20. As as a stem cell lobbyist
Let me say I promise you, I repeat, I promise you, I will do everything in my power to pass stem cell legislation not only for your family but for mine. I am a parkinson suffer. My eleven year old niece has hemophilia, and my brother Doug has ms.
I know how brutal the animals on the other side of the debate can be and how rough they can play but I know in my heart that God want's a cure and the picture of your baby has given me more motivation to carry on the fight. And believe me this broken down battered body has one good fight left in it and stem cell is the cause.
I will be saying a prayer for your family tonight and give the baby a hug and kiss for me. I know he has a super mom. Take care and god bless Danny.
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 08:41 PM
Response to Reply #20
24. Thank you, Danny...
I gave Alexsei a big hug and told him it was from a faraway friend he didn't know. He asked why he didn't know you and I told him that you were a "heart" friend. "What's a heart friend" he asks, and I told him that "it is someone who thinks you are a great kid even though he hasn't met you."

If you don't mind, in a few months after we move back home to N. California, I'd like to get in contact with you to discuss further activism on my part.

Cat
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DanCa Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 09:25 PM
Response to Reply #24
26. That was very touching thank you
My next event is on september tenth for a parkinsons group that just started called shake rattle and roll in chipolte (sp) Il. From thier I'll be in new orleans for yopa in October. I dont know my schedule after that. Hang in there Cat your a strong woman. God bless and keep fighting. Were in this together.
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seabeyond Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 08:39 PM
Response to Original message
23. what a beautiful honoring of your husband
thank you for sharing your story. with all the tears. bless you all
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GreenPartyVoter Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 09:11 PM
Response to Original message
25. I am so sorry *hugs* Thank you for sharing this and for fighting for
what is right even though it hurts.
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AuntPatsy Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-28-05 09:35 PM
Response to Original message
27. Kick, for you as well as others in need of stem cell research....
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jul-29-05 06:39 AM
Response to Original message
28. The radio alarm went off, and this was the first thing I heard...
http://www.cnn.com/2005/POLITICS/07/29/frist.stem.cells.ap/index.html

I'm just sitting here a bit stunned! I know Frist has many reasons for changing his mind on this subject, but at the moment, none of them matter to me... WOW!
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Proletariatprincess Donating Member (527 posts) Send PM | Profile | Ignore Fri Jul-29-05 07:40 PM
Response to Reply #28
30. never underestimate the power of story telling
Your story and activism is powerful, Catabryna. Let's not forget that its people like you and the stories you tell that move the powers that be. And if you doubt me, read Howard Zinn's People's History of the United States. You have my admiration and complete support and confidence and you will and are making a difference.
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catabryna Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jul-30-05 09:13 AM
Response to Reply #30
31. Hi there!
Don't I know you from somewhere? *wink*

Love you!
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anarchy1999 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jul-30-05 10:47 AM
Response to Original message
32. You've taken my breath away. Thank you for sharing your story
with us and our love goes to you and your family.

I'm so sorry.

Peace.
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scarletlib Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jul-30-05 11:28 AM
Response to Original message
33. I am sitting here crying after reading this.
n/t
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