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Old 06-30-2002, 07:48 PM   #1
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Post My sister's leukemia story

My sister Debi started feeling sick in early February. She had a fever for a few weeks and felt dizzy & weak. The doctors really didn't do too much to help her at this time. She had to keep going back to the doctors because she knew something was wrong. Finally, they admitted her. They had found that she had lost a lot of blood internally. They ran a whole lot of tests on her. And then after a two-day stay in the hospital, I was visiting her along with her husband Nick and her two kids, Kristina (12) and John (15). The two kids went out of her room to buy a soda. In the meantime, the doctor came into her room. He was talking for a few minutes to her and then said, "by the way, we think you have leukemia".

That was the beginning of a nightmare and a glimpse at how these doctors at Kaiser were going to handle this. The three of us sat there in shock at what this doctor just carelessly blurted out. I'll never forget Debi's face when he told us that. But then the doctor said that it's 70-100% curable and that she would be just fine. Debi was worried about just going through the chemotherapy process, losing her hair, feeling sick, etc. Her real worry was that she could get an infection in the process.

Two days later she started her chemo for Acute Myeloid Leukemia (AML). She had to stay in the hospital and take a bag of it a day for 7 straight days. The normal dosage is 100mg a day, but later we found out that the doctor gave 170mg a day (they still argue that this wouldn't have done the damage, but we all know better & we have a lawyer looking into it). Debi's attitude was fantastic during those 7 days. She hardly got sick and she said her motto was "one step closer". She was going to do everything possible to get one step closer to getting healthy again. She knew that she had to get a bone marrow transplant after the chemotherapy so me and my other sister, Sandi, got tested immediately to see if we were a match. Debi was really worried that she wouldn't get a match. The odds of me or my sister being a match was about 25-33%. The results would not come back for 3 weeks however. Debi completed the chemo and everything seemed to be ok. But two days later, she went into a coma. That was on March 10, 2002. They had no real explanation why this had happened...at first they said she had an infection, then a stroke, and then bleeding from the brain...but no real answer for us.
Four days later, the doctors told my mom and Nick that they should think about "pulling the plug" because the brain damage was so bad that she'll probably just be a "vegetable". So the entire family got together to discuss what we were going to do. We decided that we didn't trust what that hospital said, so we demanded that she gets moved to a better hospital. We wanted City of Hope, but instead they sent us to Kaiser Foundation Hospital in Hollywood.

When she arrived there, Debi was in bad shape. Her white count was almost zero because of the chemo. So she developed a fungal infection and pneumonia. After a couple weeks, they didn't think she'd make it because of the infections. I remember the doctor telling me, my mom, and Sandi that she probably wouldn't make it because "those infections are hard for a healthy person to beat, much less someone as sick as Debi". But we all continued to sit by her bedside and talk to her. Nick and my mom were there everyday. Luckily, Nick's work donated enough of their vacation days to him to total about six months. Debi's eyes started opening after about a month in the coma. But of course she didn't respond to much stimulus. But we all knew she was still in there. She stayed in the ICU ward in Hollywood for about six weeks. Debi did fight off all of the infections she had and her white count went up to the normal level. The leukemia was in remission. By the way, we found out that my sister Sandi AND myself were BOTH bone marrow matches for Debi. Debi was destined to be cured from this terrible disease.

The doctors held a meeting with us and basically said that she was PVS (persistent vegetative state). They said the brain injury was severe and that they'd never seen a case like hers (they said it was a landmark case). Although they didn't come right out and say that it was from the chemotherapy, they kind of implied it. They didn't give her much hope at ever being able to do much of anything. We never believed that, however. We wanted her to be in a brain injury rehab program. So, that's when she went to Casa Colina Rehab Hospital in Pomona.

While there, Debi started responding by looking at who was talking, slightly moving her legs and hands when we asked. Sometimes we would tell her something, & her facial expressions told us that she was still in there (she just couldn't get her brain to move her body). She's on a feeding tube & a catheter, but until this time she never had to be on a ventilator to breathe...she was always able to breath on her own. Debi was really improving with the help of physical therapists, speech therapists, etc.

But after 3 weeks, she had an "episode"....it looked like she was having a seizure. So they rushed her to emergency at Pomona Valley Hospital. While there, they immediately put a vent in her to help her breathing. We knew doing this was bad for Debi because vents can cause infections and that's not good with someone with leukemia. But after five days, we were able to wean her off of the vent. At one point in that week, we thought we were going to lose Debi because her vitals were so bad. Sandi, my mom and myself rushed to the hospital one day because Nick thought she was going to die. But they gave her morphine and that seemed to get her heartrate stable again. She must have had a lot of angels with her that day

Debi proved to be a fighter once again and made it through all of this. So after two weeks in ICU, they sent her to Kaiser in Riverside. Kaiser would not let her go back to Casa Colina because they didn't want to pay for it anymore (and battling Kaiser is another story that I won't get into here).
Debi has been in Riverside Kaiser for 3 weeks now and her progress has been unbelievable! Nick does physical therapy with her all day. Debi can move her legs and arms better than ever. About two weeks ago, she laughed for the first time. My mom and I were telling her a story that was funny & Debi started laughing. And of course Nick had just left the room so he didn't get to see it. When he returned five minutes later, he didn't believe it, but we mad her laugh again. She laughed about 8 times. I thanked God that I was there to witness that. We all three were crying because we were so happy. Over the next week, she would only laugh maybe once a day. Nick would tell her to move her finger for yes and then ask questions. She was able to communicate that way. It takes her a while to move what she needs to move, but we see she is progressing. She is definitely NOT PVS like the doctors thought. She's even trying to make some sounds. Two days ago, I made her laugh over and over. She probably laughed about 20 times. My sister and I got along really well and everytime we talked, we'd both be laughing till it hurt. Yesterday (June 29), she laughed alot as well, so it's becoming more consistent. We also saw her nodding her head. The nurses have been excited about her progress as well. It's almost as if that "seizure" she had at Casa Colina sparked something in her brain because she's never been more responsive.

So that's where we are. Debi is a fighter and we know she will get through this and hopefully be well enough to get the bone marrow transplant if she still needs it.

Thanks for your prayers.
Sheila




[This message has been edited by moderator2 (edited 07-22-2002).]

 
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Old 07-01-2002, 07:39 PM   #2
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kimya HB User
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Sending you a prayer for your sister's continuing recovery. Stay strong as a family so that your love for each other http://www.healthboards.com/ubb/love2.gif will carry you through this.
-k.

 
Old 07-01-2002, 09:21 PM   #3
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Enjoyed reading about your sister. I am a 9 year CML patient. Been a tough strugle for me also. But, finally I am in remission as of last week. My prayers are with your sister. I have had many, many prayers through the years and that is the only thing that has gotten me where I am now.
Dutchie

 
Old 07-22-2002, 12:40 AM   #4
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I AM REALLY HAPPY TO HERE THAT YOUR SISTER IS DOING GOOD. IT IS ALSO REALLY GREAT AND A MIRACLE THAT NOT ONLY YOU BUT ALSO YOUR OTHER SISTER ARE MATCHES. I HOPE FOR THE BEST FOR YOU AND YOUR FAMILY.
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Old 08-17-2002, 11:04 AM   #5
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apegirl_05 HB User
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I really liked reading your sisters story. It's great that she is doing good. It was a miracle of god that you and your sister were both matches. Not everyone are lucky like your family was so god bless.

 
Old 09-05-2002, 09:27 AM   #6
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yaro HB User
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I am truly happy for your sister and your family..and yes it does seems as if she has angel all over her..and the family...as i sat here and read your story i wished i could do something to help out and i realize that the best i could do is pray..and i have from the moment i read your story i hope that she is doing better and you all are mantaining your strength..may god hold your sister in his hands and care for her and he watch over you all....

 
Old 09-05-2002, 09:52 AM   #7
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~Little Flower~ HB User
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I'm so happy happy for you and your sister. I wish your family all the luck with getting thru this. She's making great progress and I think she'll be able to recover. God bless your sister and your family. Stay strong. Lots of love.

------------------
~Kind words can be short and easy to speak, but their echoes are truly endless.~

*~*Cheyenne*~*
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~Kind words can be short and easy to speak, but their echoes are truly endless.~

*~*Cheyenne*~*

 
Old 10-30-2002, 08:01 PM   #8
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LisaRenee' HB User
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Just read your sister's story...with tears streaming...how wonderful. That's the power of prayer and the backing of a wonderfully supportive family. God Bless each and every one of you that did not give up on her. I am a survivor of Non-Hodgkin's lymphoma and I can tell you personally...cancer is a very hard thing to get through, but a supportive family means the world in fighting it!!! Stick with her and keep us posted....I'll be praying for you guys and your sister.

 
Old 10-30-2002, 10:29 PM   #9
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Sheee HB User
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Thanks for thoughts and prayers about my sister. You can see all of her updates at:
[url="http://www.debramoretta.com"]www.debramoretta.com[/url]

Thanks.

 
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