My name is Jenny Devoe and I am Hayley’s mom. This is an open letter with the only goal being that someone will read it and offer some type of help for my little girl before its too late. At this point in time I am writing out of sheer desperation with the hope that Hayley’s case will spark a sense of interest and intrigue for a new set of eyes.
Our family has exhausted all hope with the medical system that we have found ourselves in over the past six years. It has become our number one priority to find the right person or group of people that may be able to shed new light on this disease in order to find some type of relief for the severe chronic pain that Hayley lives with daily. Hayley herself has lost all hope in ever living a normal life or any life at all and has already lost most of her childhood to this disease. I can only pray that someone will intervene before it’s too late.
For brevity sake I will try and condense a brief synopsis of Hayley’s medical history with this disease; however, I could provide more detailed notes and medical records should you take an interest in her case.
At the age of seven Hayley began having attacks which consisted of severe sharp upper abdominal pain that brought on instant vomiting & bile. Upon the first attack I immediately rushed her to emergency at our local hospital. After many tests and examinations it was discovered that her pancreatic amylase levels were over 3400 rather than the normal 20 – 30 range. She was admitted to the hospital and after a week of bed rest, (NPO) fasting, IV fluids and heavy pain medications her symptoms subsided. At that 1st admission the doctor felt the diagnosis was most unusual for a child of 7 but appeared to be an attack of pancreatitis “likely” brought on by some type of hit to the chest or similar trauma. When asked if she had encountered such trauma Hayley and I both agreed she had not, however, she was feeling much better by this conversation and that was all that mattered (so I thought). Approximately (3) months later we had a repeat incident. Once again the same doctor was on-call and given the raised amylase levels and Ultrasound findings he proceeded with the same diagnosis and treatment. Again he asked if she had been hit in the abdomen area. Again we said not that we could recall.
These attacks began coming every couple of months and each time the same treatment was given and the same diagnosis was made. It appeared that even specialists believed it was just a fluke that a child would have these on-going pancreatitis episodes each time stating these attacks must have been caused by some type of sport or chest injury. I knew in my heart this wasn’t the case but felt there was little I could do to argue with authority.
Looking back I find it hard to believe that no one seemed to be taking Hayley’s situation seriously. Doctor’s did not want to look at her out of the norm. Was it no time, no budget…I don’t know. All along I had been educating myself on the pancreas and everything I could find out about Hayley’s condition was not good. I educated myself on the pancreas, its functions; surrounding organs, the duct and anything I could find. The one thing I could not find was another child with similar symptoms. I became a pancreatic sponge looking for any kinds of treatments out there that would be able to bring back some sense of normality to Hayley’s life; however, if you don’t have a doctor on board this knowledge means nothing.
As time went on Hayley’s symptoms worsened and the frequency between the attacks shortened. It was not until my constant request for more tests, further investigation and second opinions that we were finally transported to Sickkids in Toronto, ON for evaluation. However, even there she has been viewed as a “rare & difficult case” and it appears to me that “medically speaking” the doctors we have been dealing with do not know what else to do for her. Our technology in this area is seemingly limited. She has now been pushed into a situation of dealing with a “Pain Team” to help her manage her pain and it’s not touching this pain. They have no other pancreatitis cases of any type so again Hayley is “cutting paths” into their medical trials even as far as to be the first 13 year old to have 3 “steroid’ blended CPB’s to try and dampen down the pain. Sadly the “Celiac plexus block” did not work. Hayley is indeed a rare case and if this pain gets much worse she will never make it.
Staying on the “pain team” subject for a moment, I do believe it is important that anyone (especially a child) learn strategies to live and cope with chronic pain. In fact I keep Hayley as engaged as her body will allow through “part-time school” and “art therapy” for counselling. While this is all fine for that side of a well-rounded treatment program it does nothing further for her medically and the pain just worsens. This pain is not a pain one can live with for any length of time. She struggles every waking moment to hang on. If left like this I cannot even think about what will become of her. Doctors only see her for a moment
We do know that Hayley carries an “active” “SPINK1” gene. Hayley has had approximately 52 admissions to hospitals, PICC line- feeding tubes, countless tests, 100’s of IV’s, pancreatic stone removal, stent insertions, MRI’s, X-rays, Ultra Sounds, Chloride Sweat Tests, MRCPs, ERCPs and so much more than any little girl should have to endure.
On May 31st 2013 Hayley’s underwent a TPAIT – Total Pancreactomy & Auto Islet Transplant.
Hayley lost her childhood all her friends, her spirit and basically everything to Chronic pancreatitis. After many discussions and knowing there was know one in our area or province who could help Hayley we were referred by Minnisotta Childrens Hospital to a “supposed” top knotch doctor in Alberta to a Dr. James Shapiro. This doctor had only ever done this TP/IAT on one (1) other child. Hayley’s condition is and was rare but we assumed the doctor knew what he was talking about. After many discussions and email’s back and forth and now after making the gut-wrenching decision to have Hayley endure a 13 hour surgey to completely remove her pancreas & splean known as a TP/AIT (Total Pancreactomy & Auto Islet Transplant), which by the way we were told by Dr. James Shapiro who lead the team ot 12 that performed the surgery did the 99.9% would stop her pain…she is in double the pain. HE WAS WRONG! Her life is now pure hell. It is too hard to watch your child suffer in that severe pain and hearing doctors say they don’t know what to do. The biggest problem is that NO doctor is willing to think outside the box. These doctors see Hayley for a 5 or 10 minute appointment and then she leaves their office. They don’t give it another thought. Patients roll through many doctors offices like parts on an assembly line. I have seen enough to know the game is on. When we leave the office Hayley is forgotten however I, her mother have to listen to my child cry out in pain almost all her waking hours knowing there is nothing that can be done (so they say). No one knows what its like to watch your child live their life in pain. I am telling you that we can barely take anymore and for Hayley’s part she is getting old enough now and is so worn down from fighting this horrible pain; she does NOT want to live like this any longer. Now I have an even bigger problem on my hands. To add to the misery I don’t blame her. I can tell you to hear those word come from your child is earth shattering. I would give anyting to give her peace and any relief even for a moment. She doesn’t know what it’s like to be pain free anymore.
Given that past 7+ years of hell Hayley has lived in I am desperately hoping to get this message to someone…ANYONE who might be able to help her. If nothing else please make a donation to her website. We are trying to start support groups for children who live in pain and have no hope. There are cancer foundations, diabetes organizations and many other terrific groups but what about these kids that don’t fit into any “normal” disease. Just because it’s rare does that mean they don’t matter? Currently there is nothing for a child that for one reason or another lives in severe, life ruining pain.
I have currently started this foundation/charity for “Children Living in Pain” (CLIP) to try and get her story told and to find help for her and other children like her suffering from all types of diseases. An online place where parents like me can reach out to each other and offer each other support and any lessons learned. This is not enough!! We need to find Hayley medical attention. We need to find Hayley a medical doctor, specialist, researcher, scientist or anyone who can look at her case and say “Yes I want to help this child”, “I want to find an answer for this family”
It is my greatest hope that you might be that person; that you might look at our case as a worthwhile challenge to engage in. We are willing to work with you and your team in every way possible and provide you with as much information as possible. If not yourself, maybe you know of someone else who might be able to provide us any kind of assistance. We are willing to try anyone or anything available to us at this point in time.
Thank you for taking the time to read this request for help. My gratitude is beyond words.
My contact information follows and I can be reached at my mobile line anytime, night or day and weekends.
(Toll Free): 1-800-563-0894 ext. 220