I just want to start out by saying how truly amazing everyone has been during Kellys fight with this horrible disease. She loved the support and just knowing she wasn’t alone you could tell meant so much to her.
This last month Kelly was fighting graft vs.hoist disease (GVHD) that had shown up on her skin and in her gut. Having GVHD meant her body was fighting the new marrow. While she was on meds to help prevent GVHD it sometimes shows up in transplant patients.
Often with transplants the bodies immune system treats the new organ or marrow as an invader and will attack it. Steroids are used to help lower the immune system while the new transplant has time to take over and start working with the body.
Kelly had been fighting GVHD on her skin for a while and finally was brought to the hospital at the beginning of October and had to spent the entire month in the hospital. Once at the hospital she was given steroids for six days to try and lower her immunity to help with he GVHD. Nothing seemed to be working and Kelly was so tired of spending so much time in the hospital. All she wanted was to be home. Because the dose of steroids didn’t seem to make a difference they decided to slowly start increasing the dose of steroids until she was receiving double what she had been. After a few days of trying this nothing seemed to be treating her rashy skin or her insides. With the Doctors at a loss they decided the best option and really the only option was to give Kelly Anti-Thymocyte Globulin (ATG) which essentially would lower her immune system to the immunity of a newborn. After receiving the ATG we noticed that Kellys rash that covered her entire body and was causing her so much pain and discomfort started slowly getting better. Now because of the ATG making her immunity so lower it increased her time of having to stay in Seattle and away from home, probably through Christmas. Although Kel hated the thought of not being home for Thanksgiving and Christmas she did everything she had too with very little complaints. She would always tell me and her dad “its just another bump in the road. we’ll get through it”. She was always so positive and never gave up.
After being in the hospital for nearly 30 days she was finally well enough to be released and able to be back at the apartment. She was so excited to finally be out of that hospital room! That night Me, Kel, and her Dad went back to the apartment and had chicken and rice. I just remember how happy she was to be home eating something other than hospital food and being with us. It was so great to see how happy she was even though she was still in so much pain.
Because of being in the hospital for nearly a month and being on a constant IV drip of fluids to keep her hydrated. She gained about 30 lbs in water weight which was mostly noticeable in her legs and feet. She had a hard time peeing enough to allow the fluid to get out of her body so she was put on a medication that helped make her pee. Within 10 days she had lost 29 lbs in water weight!! She was down to 93lbs!
At this point she had been out of the hospital for 10 days and her skin rash started coming back and her insides never seemed to get much better. They decided that Kelly should be admitted back in the hospital to keep a close eye on her GVHD while it healed. During this time her Skin finally stated showing signs of healing. Although she seemed to be getting better on the outside the GVHD in her gut just didn’t seem to heal like they wanted. The plan to try and help heal the gut was to run her blood out through a tube into a UV light and then cycle it back into her body. Doing this would help kill the bad cells in her blood. In the morning on Tuesday November, 10th Kellys doctors came by to have her sign a consent form allowing them to move forward with this blood treatment. After signing the form and talking to the docs, Kellys heart rate started increasing rapidly and got up to 193bpm. An average heart rate while laying down and sleeping is around 60-70bpm. Kelly was always running a higher heart rate usually around 100-110bmp. Because of the heart beating so fast the Doctor called a Code Blue and immediately rushed her up to the ICU! Once there they got her heart rate down she seemed pretty stable. Because they put her on morphine she was in and out of sleep but seemed okay. After being in the ICU for a short time her blood pressure started to drop rapidly. The Nurses started giving her bags and bags of fluid through her IV to help hydrate her. Once she was stable and resting the Doctors talked to Myself and her Dad and told us that the reason her heart rate was so high and blood pressure was so low was because she was very dehydrated which brought her blood pressure down and made her heart work overtime to keep up. Giving all the fluids so quickly got her stable and seemed to fix the issue. After a few hours of being by her side and talking with her, a group of doctors all came into the room to explain what had happened and where to go from there.
They explained to us that Kelly had a virus inside her called the Adenovirus that she had tested positive for earlier since she was last admitted. The virus was increasingly getting worst and was inside her blood and liver. It was attacking her liver and they didn’t have a way to stop it. Although they had been giving her antibiotics to help control it, she had no immune system to help fight the virus off. The only way to get her immune system back up strong enough to fight off the virus was to stop giving her steroids, but she couldn’t be taken off the steroids because without them the GVHD would take over and would end her life. With such a low immune system, receiving antibiotics only slows the virus down but has nothing to attack it.
The Doctors pretty much told us although they would continue to do everything they could to help Kelly they were unable to save her because she had no immune system to kill offf virus. Her liver tests showed that within a few days she would go into liver failure and from that point they could do nothing. The doctors gave her a very slim chance of survival and only a couple days before she would be confused and then eventually would go into a coma and pass away.
I’ll never forget the feeling that I had once hearing that news. It was like a knot in my stomach that had a hold of everything inside and would not stop tightening. Just an over whelming feeling of sadness and helplessness. All I could do was hold Kellys hand and hug her. I never wanted to let go. I keep holding her like it would somehow make her pain go away and she would never leave.
Even after hearing this news and seeing me and her Dad just crying and holding her she was still so positive. Telling us “it’ll be okay” and “ Im not giving up, i’ll prove those doctors wrong”. Just hearing how positive she was and seeing her with so much confidence it made me feel so much better about everything that I was just told. She was such a fighter and so amazing that even after hearing that news she picked up her phone and started changing her fantasy football line up. “Shit, I need a kicker. Mines on a bye”. Just seeing her confidents was such an amazing thing. Never down and never any doubt. “I got this” she would alway remind us.
Doug and I decided that we better let people know of her condition and let her friends and family get a chance to spend some time with her. It was such an amazing thing to see how many people came running at the chance to see Kelly and be with her again. All of her closest friends and family came to be with her at the drop of a hat. Some flew in from Utah, others from Colorado. Some drove hours dealing with the Seattle traffic to just be with her. It was so wonderful to see and it just brought so much life out of Kelly. Although we defiantly had lots of tears it wasn’t all sad. We got to laugh and joke and just be together like she wanted. It made her feel so loved to know that she has the biggest group of supporters that lover her so so much!
The next couple days were very tough but Kelly didn’t give up. She fought until the very end.
With the Adenovirus continuing to worsen and her liver started to fail and now her kidneys were showing signs of decline. On Saturday, 14th in the evening her kidneys started to fail and were not working like they should. Because they were not working the potassium in her blood started to increase. The only way to help the kidneys at this point would have been to put her on a dialyses machine. Kelly was barely there but we asked her what she wanted. She told us “I’m ready to go”. from that point we took her off of the machines and just gave her pain meds to make her comfortable. At 12:55am Sunday, November 15th, 2015 Kelly passed away in her sleep.
Kelly was so amazing and the best thing to have happen to me. I think we have her wonderful Father to thank for what a beautiful women Kelly became. Kelly and her dad were such an amazing duo. Together they were so much fun to be around even when Kel wasn’t feeling her best. She loves her dad so so much. I know he meant the world to her.
Thank you Doug for trusting me with your little angle and letting me be apart of what you and Kel had. My heart goes out to you and the pain you must be feeling.
To have to say goodbye to the Love of your life and Best friend is by far the hardest thing I have ever had to do. She was such a beautiful person with the most amazing heart. She was a wife, a daughter and an amazing friend. She was always caring about everyone around her even at her worst. She was never selfish and would suffer to make someone else feel better. I feel so blessed and lucky to have the women of my dreams be my best friend and me wife. I will love you alway and forever my love. I know you’ll be watching over me making sure I don’t mess up too bad.
– I love you
Kelly Benson Rice
February, 27th 1988 – November, 15th 2015
kellyrice19.wordpress.com 