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Jessica’s Story

Jessica was diagnosed with Eosinophilic Gastroenteritis at age 2 and has been tube fed since she was 7. In March 2008 and was diagnosed with Hemphagocytic Lymphohistiocytosis, a rare blood disease effecting 1 in 1,000,000. She started chemotherapy for the HLH in Nov 2008 and received a Bone Marrow Transplant April 7, 2009. Today she is fighting the effects of the disease, chemo, and the transplant itself.

Medical Fund

Heritage Bank
3024 SW Wanamaker Rd.
Topeka, KS 66614

This is a story of courage, strength, bravery, and HOPE. This is the story of my hero and my inspiration. This is the story of "Jessica's Journey".

April 30, 1996 David and I were blessed when Jessica Marie Seidel entered this world and changed our lives forever. She was 4 weeks early weighing in at 5lbs. 1oz. and ready to fight. It took less than 24 hours for us to realize her GI tract was having trouble functioning and they needed to place an NG tube through her nose into her stomach so she could get appropriate nutrition.

Jessica continued to have stomach problems through infancy and into her toddler years. Every time she ate something she was in so much pain that she began to refuse food and we saw her slowly starving and becoming malnourished.

At the age of 2 she was diagnosed with Eosinophilic Gastroenteritis (EGE) at Children's Mercy Hospital in Kansas City, MO. EGE is a condition where above normal amounts of eosinophils, a type of white blood cell, are found in the GI tract. They cause swelling and inflammation, nausea, vomiting, diarrhea, and pain. She was started on several medications to try and repair the damage the eosinophils had caused. By the time she was 4 she was in remission and leading a "normal" life. She started kindergarten and did very well but her remission was short lived. At the age of 6 the EGE had returned and was worse and more damaging than before. Prior medications were not working, so in April 2004, the decision was made to have a permanent feeding tube surgically placed into her stomach and she stopped consuming food all together and relied on a special formula for all of her nutrition.

She was able to minimally sustain herself with the formula until August 2007. At that time she was no longer tolerating the formula and she was placed on TPN, nutrition through her veins. The hope was that her GI tract would rest and heal and that she could restart formula feeds.

Things were looking positive until May 2008 when she became critically ill. We were afraid that she was not going to survive the horrible hit her body was taking. "Something" was destroying all of her blood cells faster than her bone marrow could make them. She started heavy steroid therapy and we saw some improvement and brought her home from the hospital.

Three short months later in October 2008, she became ill again and this time we were given the diagnosis Hemophagocytic Lymphohistiocytosis (HLH). We were told the only way she was going to survive was to start her on very aggressive chemotherapy.

The chemo was hard on her, she lost her hair and was sick most of the time. Despite being strong chemotherapy the HLH was relentless. The more chemo she received, the more aggressive the HLH became. We were told that the chemo was not working and that the HLH was taking her life.

Her dad and I were faced with making a huge decision: let the HLH take its course and she would survive maybe a few weeks OR try and find a bone marrow match for an immediate bone marrow transplant, which she might not survive either.

The first week of April 2009 Jessica began the horribly harsh chemotherapy that would destroy all of her bone marrow and on April 7 2009 she received her life saving bone marrow transplant from an unrelated perfect match.

Jessica has had multiple set backs and complications from the transplant, but she is a survivor and faces each challenge with grace and dignity. She continues to fight each and every day as her journey unfolds and she faces new health challanges.

She is MY fighter, MY inspiration, and MY hero.

Please check back often as I try to update her journal frequently. For more information on EGE and HLH see the Links section on this web page.

Latest Journal Update

Good Days

It has been an amazing six months since I have updated Jessica's web page. We have been busy leading a somewhat "typical" life. Jessica has not been hospitalized or had any major set backs. All good news!!

She has been attending school on a part time basis and has started again with a home tutor to do some additional computer work. She plans on picking up a couple of extra hours at school next semester. She has finally made it to her senior year, but is still trying to play catch up with her credits.

On the medical front things have been pretty quiet, thank God! She continues to get monthly infusions to boost her iron/hemaglobin levels and remains on multiple medications to counteract some of the chemo side effects.  

On April 9th she celebrated being 5 years post bone marrow transplant. Her yearly scans and appointments showed that the HLH remains in remission and that she is still ( and will probably remain) 100% donor cells! She does have some damage to some of her body systems from the HLH itself and from all the chemo she was on, but each day she gets stronger and is learning to deal with the side effects.

The picture above is one of the many amazing senior photos that were taken last week of Jessica. To look into her eyes tells the story of how far she has come and the many things that she has had to endure over the past several years. She has grown into a beautiful young woman with a bright future ahead of her. She is our hero and we could not be more proud of her.

We want to thank ALL of you for the continued support and love that you have provided for Jessica and our family over the years. I truly believe we could not have made it to this point without your help. We have been blessed in so many ways. Thank you again.
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Comments

1 Comment

Linda Anderson
By Linda Anderson
What a great post! She is beautiful, and you are super parents!