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In Honor of Jessica

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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

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Many of you have been asking about Jessica and I apologize for not keeping all of you updated on her. You have all been a huge support for our entire family and hope that you will accept my apologies for not keeping this site updated. With that being said, let me give you some of the amazing progress she has made!

Jessica is once again free of all invasive devices! She had her feeding tube removed and several months later finally had her port removed. For the first time since the age of 7years old she is completely "tube" free. All the chemotherapy literally fried her adrenal glad so her body is unable to make the required daily steroids needed so she is on daily steroid therapy. She is on medication to help her body maintain a typical blood pressure, medications for migraines, and a daily injection that she gives to herself to try and re-grow bone that was destroyed due to treatments.

At this point in time she is still 100% donor cells from her bone marrow transplant. It has been a very long and difficult 5 years since she received her life saving transplant and she continues to deal with side effects, both physically and emotionally. She is however, getting stronger each and every day with fewer and fewer set backs as time goes by. 

She has had the opportunity to be in touch with her bone marrow donor, but has not been able to meet her in person. They talk/text frequently and we hope to someday be able to meet her in person and thank her for giving Jessica something that we could not.

Last summer Jessica had the opportunity to travel with the People to People organization to Sicily, Italy, and Greece. It was the trip of a lifetime and something that she will remember forever. She was gone for 2 weeks and did pretty well physically with only a couple of minor issues while she was out of the country. It was a huge step in her recovery and her acknowledgment of what she has been through and how far she has come.

At this point in time Jessica spends her days applying for college scholarships, regaining her strength, and preparing to attend college in the fall. She has been accepted to several schools, but has chosen to attend Wichita State University here in Kansas. It will allow her to move away from home and get some independence while at the same time being within a few hours drive of us if she were to have any set backs. She plans on majoring in cultural anthropology and possibly attending grad school.

No child should have to endure what she went through, but it has made her the confident, independent, strong young woman that she is today. Her family and friends could not be more proud of her and look forward to watching her continue to grow into an accomplished adult.

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Comments

26 Comments

Linda Anderson
By Linda Anderson
Well said! Jessica, we are all so proud of you! You are beautiful, inside and out, and we know you will do well as you pursue.a career! God bless you all! Hugs and prayers continue, of course!
Erica Beyea
By Erica Beyea
Great update! Congratulations on all the good news Jessica - continuing to keep you in our thoughts and prayers as you start college.
Sharon Heitman
By Sharon Heitman
Leslie, thanks for the update. I've been thinking about Jessica and praise God that she is doing well. She's a beautiful young lady inside and out.
Elaine Mattingly
By Elaine Mattingly
Amen,Amen and Amen!
Colette B
By Prayer Warrior Colette
Thanks for the update. So glad to hear that Jessica has gained more freedom. To hear that she was able to take such a wonderful trip with minor complications was just joyful. Jessica I am so glad to see how far you have come. You are in my continued prayers as you begin the next part of your journey. Asking God to guide your every step and to light your way. Surrounding you with Love Light and Blessings Love and Hugs from Florida.
DeEtte Bryce
By DeEtte Bryce
Thanks for the update! This is great news! Continuing to pray for Jessica as she continues to grow stronger and for eventual total healing!! Praying for all of you!!
Tracey Thudin
By Tracey in Mn.
What a wonderful update!!
Joe & DeAnna Jordan
By Joe & DeAnna Jordan
Well Jessica... I hardly know what to say. It has been a long time and this is the best news I could have get today. I am so proud for you. I hope your college plans are every thing you want and know always what a wonderful young lady you are always will be to me for to be able to know. Love to you each, Joe
Karen Cooper
By Karen C.
Wow, what a wonderful and inspirational update! You all are so blessed to have each other. I can only imagine how tough all this has been for you, and how joyful you all are feeling right now. Big hugs to our family from yours!!!

God is great!

Happy Easter!

Brian and Karen C.