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Life Saving Treatment for Susan

$51,953 of $160,000 goal

Raised by 309 people in 8 months
Created October 2, 2018
Fundraising Team
on behalf of Christopher Kiechel
I would like for you to meet Susan.  Susan and I met in elementary school and she is one of the most remarkable people I have ever met.  She is, by far, the fiercest fighter I have ever known.  Susan is a wife of 26 years to Chris Kiechel and the mother of three children- Christian age 25, Joshua age 23, and Sloan age 21.

Growing up, Susan was alway active in sports.  Throughout Middle School and High School she played on the basketball, softball, and soccer teams.  At Auburn University, Susan played on the intramural soccer team.  The school did not have a Varsity Women’s Soccer team.  Susan saw the injustice in the difference of funding for men’s and women’s sports teams and she did something about it.  After two years of research, she determined that 12% of funds were being used for women’s sports teams while half the student population was female.  She also polled women on campus and found ample support for a women’s varsity soccer team.  She then appealed to the university to implement a varsity soccer team.  Upon their refusal, Susan took the issue to the Office of Civil Rights at the Education Department and sued Auburn under Title IX of the federal education code which bars discrimination on the basis of gender.  The University settled out of court in 1993 and agreed to fund a women’s varsity soccer team.  At this point, Susan was no longer eligible to play but today Auburn has a first class women’s varsity soccer team.  Recently, Susan returned to Auburn to see the team play on the field she helped to build.  She also bestowed the honor of naming rights to the field (that she held but never used) to current coach, Karen Hoppa.

I tell you this story so you have a glimpse of the fighter that is Susan Kiechel.  Susan is now in a different fight - she is fighting for her life.

You see, in December 2000 Susan began experiencing problems picking up her feet.  This was devastating to a star athlete.  After many tests, Susan was diagnosed with CMTX.  This is a genetically inherited, rare, progressive neurological disease that affects the myelin sheath that wraps around the peripheral nerves that control muscles and causes it to slowly shred apart.  Over time it causes the loss of normal function to the lower legs/feet and hands/arms.  Within 4 months she required leg braces and forearm crutches to walk.  The progression of her disease was much quicker and more severe than expected, so she sought additional care from the CMT clinic at Wayne State in Detroit in July 2001.  The specialists there quickly realized something wasn’t right and began further, more extensive testing.  Her illness was progressing too quickly and becoming too severe to be explained only by the CMT.

In July 2001, Susan was diagnosed with another rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  The CIDP was in addition to the CMT.  Susan was now fighting two rare and progressive neurological diseases.  CIDP is an autoimmune disease that causes the immune system to think the myelin sheath around the nerves is a foreign body and causes the body’s immune system to aggressively attack it.  In most cases, CIDP only affects the limbs, though it generally causes paralysis.  However, in 5-10% of cases, CIDP progresses to affect the trunk and becomes a life threatening illness because it will affect the nerves around the vital organs.  In December 2002, Susan joined the 5-10% of CIDP patients with a life threatening version of the disease.

To slow the progression of  CIDP, Susan began Intravenous immunoglobulin (IVIG) treatments on September 12, 2001.  These treatments require a hospital stay every 28 days.  Susan was determined to fight to slow the progression of these diseases so her children would have a mother alive to raise them.  While the treatments have slowed the progression and kept her alive, they have come at an extremely high price. Each month, the disease is able to make some progress.  The IVIG slows the progress but it does not stop it.  Complications of IVIG treatment include stripping the body of magnesium, Vitamin D, and iron.  To counter this, Susan must receive multiple infusions of magnesium and iron each month along with countless other medications to treat the side effects of the IVIG treatment.  Also, the IVIG treatments induce meningitis which is the swelling of the membrane surrounding the brain and spinal cord.  This swelling threatens Susan life constantly and causes excruciating pain.  Each month, Susan’s neurological team walks the line of giving enough treatment to keep her alive but not enough that it does more harm. 

Susan has endured 232 monthly treatments.  This far surpasses the amount of IVIG treatments any other patient in the world has completed.  While the treatments have slowed the progression of the CIDP, they are also damaging her body every month.  Susan’s body can not withstand many more treatments.  She will die soon.

Susan has fought every day for over 17 years to stay alive until a treatment could be found.  That day has arrived.  Clinical trials show Stem Cell Transplant is a very effective treatment for her neurological disease.  She has gone through all the testing phases and has been APPROVED by doctors in Charlotte to received a Stem Cell Transplant.  This procedure will save her life.  It will end her 17 year struggle.  It will return her to her husband and children.  It will help her lead a normal life for the first time in 20 years.  The only thing standing in the way…….money.  Processing the stem cell transplant through insurance is not an option.  The only option the hospital is providing Susan is an upfront cash payment. Please help us raise the money for Susan to receive this Stem Cell Transplant.  Please don’t let money be the reason a wife, mother, advocate, fighter, hero dies.


We thank you for your participation.  Please donate and please spread the word.  To us, you too will join the rank of a hero.
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Great news guys, SUSAN IS BACK IN THE UNITED STATES! She has completed the Stem Cell transplant procedure and flew back via air ambulance this morning. The next 6+ months she will be closely monitored as her immune system still isn’t strong and she is very susceptible to infections and bacteria.

Here are some of the last photos she took back in Mexico. I want to thank again the amazing team at Clinic Ruiz. Not only did they save Susan’s life, but they gave her the best medical care that she has ever received. They did everything to keep Susan as comfortable and as healthy as possible. We cannot recommend them enough.

I’ll leave you all with the last photos she took with the wonderful people who saved her life. Thank you all again for being our heroes throughout this process!
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Happy Mother's Day!

Susan got her stem cells put back into her today! Instead of writing my own update, I'm going to forward this group text she sent:

"happy Mother's Day! Had to share. I got my stem cells back today. First picture-my 3 Physicians while I'm running the transplant cells. Second picture is my happy birthday shirt because many people consider this their second birthday. The last picture is of my non doctor medical team. My driver's, coordinators, and assistants. I can't think of a better Mother's Day present.! Hope all of you enjoy the day as well!!"

She's doing great. The next two weeks will mainly be lab work and monitoring to make sure she stays healthy since she's neutropenic (no immune system). We'll update again next time we have news!

Thanks again for being our heroes!
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More Great News! Susan had her stem cells harvested today! She will do high-dosage chemo today and tomorrow. The chemo is done to destroy the rest of her immune system before putting the stem cells back into her body. Sunday Susan’s stem cells will be injected back into her bloodstream. Conveniently, Sunday is also Mother’s Day, so her stem cells will be the best Mother’s Day present ever.

Attached are pictures of Susan with her stem cells! We’ll update again soon! Thanks for all the love and support!
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Great news! SUSAN HAS STARTED HER STEM CELL TRANSPLANT!!!!
We’ve been radio silent for a few months now, so I know you guys probably have many questions. I’ll do my best to answer them below. But first we wanted to thank all of you. Without your donations Susan wouldn’t be doing HSCT. You all have helped save her life, so thank you for being our heroes.

Alright, time to answer some of your burning questions.

Q: How did you afford the transplant? Did we raise the rest of the money?
As you all know, the price we were given was about $160,000. The last time we updated, we were still about $40,000 away from that goal. We decided to look at all of our options again and see if we could find somewhere else for mom to get HSCT. We found a place out of the country that has been doing HSCT for over 20 years. Since they don’t have the inflated healthcare costs the US does, the treatment is much cheaper there, about 1/3 of the cost to be more specific. Susan applied and was approved to go, and since you all had already helped us raise that amount of money, we were able to send it immediately and get Susan there ASAP.

Q: Out of the country? Is it safe?
This was our biggest concern going out of the country. Rest assured, we did our research. The doctors studied in the US, and we had Susan’s doctors do research to ensure the doctors’ credentials were valid. The facility has been doing transplants for autoimmune diseases (like CIDP and MS) for over 16 years and have some of the best statistics for any HSCT clinic in the world. We got in contact with several people who had HSCT done at this location and heard only amazing things. We are confident this is both a safe and effective place for Susan to receive this life-saving treatment.

Q: How long does the transplant take? When will Susan be done?
The entire process will take about a month. Susan did chemo Tuesday and Wednesday. For the next 5-7 days she’ll be injected with a drug to mobilize stem cells from the bone marrow into the blood stream. Late next week they will harvest the stem cells from her blood, she will do two more rounds of chemo to get rid of her immune system completely, and then finally, they will put her stem cells back into her. After that point, she becomes neutropenic, which means she has no immune system and has to basically be isolated. She’ll stay there for another 2 weeks or so until the stem cells have started to do their job. Then she will return to the US by air ambulance. Our next update will likely be when her cells are harvested next week.

Q: What’s happened in the last few months since the last update?
Well, a lot has happened. The last time we really did an update was after Susan had a new port-a-cath implanted in her right leg. After that, we had a month or two of mostly just testing and her normal monthly treatments. The doctors that were originally going to do the transplant were getting nervous because they had never done a stem cell transplant on a CIDP patient, and were concerned with Susan’s neck, MRSA infections, and ongoing access issues. They wanted to wait until July to reevaluate, which we knew would be too late. We started to work on other issues we had, while looking for another place to do the transplant. In March, Susan applied for HSCT at the out of the country clinic, and was accepted shortly after. Susan’s neck was cleared by her doctors and her MRSA infection was gone, but we still had to address the access issues. Susan needed a very specific kind of access line in order to have her stem cells harvested. So, we spoke to many surgeons to figure out how to get this access line in before she left the country, and we made a plan.

The last two weeks were eventful. Susan had her final IVIG treatment from April 10th-18th. April 22nd, she had a surgery to attempt to put a Trifusion access line into her chest. This surgery sadly failed, as the surgeon couldn’t find a place to put it because of all the damage from her previous 14 ports. April 25th she had another surgery. The surgeon implanted a translumbar line for HSCT, and implanted a new port that connected to a vein in her liver and sits on her ribs. Since a new port was in place, the surgeon also removed the port in her leg. The next day, there was a complication with the new port, so they had to remove it and place another new port back in her right leg. If you’re counting, that’s 3 major surgeries in 5 days, and the next day she had to get on a plane. As you all know, Susan is extremely strong, and she did it. She got home from the hospital around midnight Friday night, packed and prepared all night, and got on a plane Saturday afternoon.

Susan also received a “Woman of Distinction Award” from Auburn for all the work she did to empower women and ensure they have the opportunities they deserve. She wasn’t able to go because of her IVIG treatment, so I (her daughter Sloan) accepted the award on her behalf. Everyone at the event was so kind, so thank you for that. It was inspiring to see so many empowered women in one place.


It’s been a rough ride, but Susan is the strongest woman I’ve ever met. Attached are some photos. She’s probably the happiest person to ever receive chemo. Thank you again to everyone who has supported us during this rollercoaster. Without you, we wouldn’t be here. Our next update will likely be late next week, so stay tuned!
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$51,953 of $160,000 goal

Raised by 309 people in 8 months
Created October 2, 2018
Fundraising Team
on behalf of Christopher Kiechel
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