You know those people that just brighten your day?

Our Eleanor is one of them. The very name Eleanor means “Shining Light” and that certainly describes our girl to the letter.

She is intelligent, bubbly, sassy, fun, silly and as animated as a living cartoon!

If you’ve ever met her, you know it’s true.  That’s what brings us to humbly asking for prayer and assistance for our girl.   

At seven years old, she has faced more challenges than many adults.  She came to us through foster care at two and a half years old. (After nearly five years in foster care, she was adopted and legally became a part of the family that loved her unconditionally.) The very night she arrived, she cried in pain, and within the first week of her being in our care, was in the ER twice and the doctor’s office twice more. 

Over the next two years, she endured many comprehensive tests, combing over the possible reasons for her frequent illnesses and excruciating pain that rendered her unable to eat, keep food down, or gain weight.

We became familiar with the ER staff and had more hospital stays than we care to count.

She seemed sensitive to some foods, but not for any reason that had been medically determined.

Major food allergies, other diagnoses and “possible causes” were all ruled out. 

Finally, after continued and thorough testing, we received an answer.  It was not the one we had hoped for, but we were grateful an accurate diagnosis was revealed so that we could begin effective treatment. 

Her (incredible) local Pediatric GI Specialist immediately referred us to Cincinnati Children’s Hospital to their world-renowned Pancreas Center.  Her diagnosis: Chronic Pancreatitis due to genetic mutations (PRSS1 & CFTR) that cause her pancreas to have an enzyme deficiency.

A change in the PRSS1 gene gives a person an increased risk of pancreatitis and pancreatic cancer.

 

*Chronic pancreatitis (CP) is a pathologic fibro-inflammatory syndrome of the pancreas in individuals with genetic, environmental, and/or other risk factors who develop persistent pathologic responses to parenchymal injury or stress.

Advanced chronic pancreatitis can include pancreatic atrophy, fibrosis, pain syndromes, duct distortion and strictures, and calcifications; pancreatic exocrine dysfunction; and pancreatic endocrine dysfunction and dysplasia. *

 

Upon being established as a patient at CCHMC, even more detailed testing was performed. Eleanor has been the recipient of “stenting” via ERCP (Endoscopic Retrograde Cholangiopancreatography) to manage the disease, unfortunately without sustainable success.

Now that all other viable options have been exhausted, we are preparing for Total Pancreatectomy with Islet Autotransplantation or TPIAT. This complex operation will be comprised of permanent removal of the entire pancreas, spleen, appendix, gall bladder, and a portion of her duodenum and rerouting/reconstructing her gastrointestinal tract.

During the first stage of the surgery, the pancreas will be removed and sent to a specialized lab where her remaining, healthy, insulin-producing islet cells will be extracted from the diseased organ and transported back into the operating room to be injected into her liver. 

The goal is for the transplanted islets to begin to function within the liver and to eventually produce insulin.  It may take months or up to a year to determine the level of success from the TPIAT.  So, from the time of surgery, she will be a Type 3c diabetic and will receive insulin via a pump/injection.

This incredible, hope-giving operation is such a blessing, as are her medical team and every physician that God has guided us to, to get her here.

However, as you can imagine, there are MANY facets of day-to-day life that will be affected, especially during the time of surgery and immediate recovery as we, Eleanor’s parents, will need to be with her during this time. We have been instructed to prepare for an extended stay in Cincinnati initially and then many travels to and from over the course of the first few years post-op.

Her father, Casey, will be taking a great deal of time from work.

There will, of course, be much of the medical expenses covered by insurance. There will also be many non-medical expenses that are not covered such as fuel to travel, lodging, meals, among many other necessary expenditures. 

We are humbled to be in a position to ask for help but are fully reliant on God and His grace that is so often exhibited through people.  We know that if everyone that reads this could simply offer one dollar to COTA for Eleanors Journey, we’ll be well on our way to reaching the COTA fundraising goal.

We are thankful to have been connected to a resource like COTA to partner with through this challenging and eventful time in all our lives.

Blessings to each of you that have offered prayer and help in ANY way.

Psalm 91 / Romans 8:28 / Jeremiah 29:11 / Isaiah 43 /

Proverbs 3: 5 – 6 / Psalm 23

 

#EleanorsJourney #COTAForEleanorsJourney #Hope #PancreatitisAwareness #TPIAT #RoadToRecovery #Healing #CCHMC

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.