Leona Tynan opens up about her teenage daughter's battle with a rare form of cancer
'I watched the sparkle go from my daughter's beautiful brown eyes as she battled cancer'
Another sleepless night. I don't know what I expected when I started the journey of a cancer parent. There isn't a how to book to guide you on how to cope when your teenager is diagnosed with cancer. I've read stories of parents of children who have been diagnosed with the dirty "C" word and truly felt for them imagining how awful it must be to be faced with having such an ill child but that's all I did, "imagined".
I’m sitting here at 4am after another sleepless night, sick to my stomach with anxiety thinking how we got to here. I brought my first born beautiful brown eyed daughter into the world at the young age of 18. That night my life changed completely and she became my whole world. I didn't have a clue. I had brought her into the world and from that moment I vowed that I would always do the very best I could for her. I fell in love and fell out of love but never so much love as I'd felt the moment I first held my daughter.
I worked hard and educated myself making sure that I would have the skills to be somebody that my daughter would look up to and be proud of. I succeeded and gave her the best life I could. I remember vividly every first, her first step, her first day at school where she skipped all the way and fell scraping her two knees. Each and every milestone filled me with immense pride. For eight years Shan was an only child and I grew and excelled in life all the more for having had her. Her brother joined us in 2006 and I believe just like she had been my first love, he was hers. A few years later would see the addition of a little sister. I would look at my three children and count my blessings that I had been so lucky to have three beautiful and healthy kids. I felt like the luckiest woman on the planet.
But in 2013 Shan began to feel unwell. She was 15 and a normal fun loving, hormonal teen. We went back and forth to doctors and things seemed to settle or so we believed. But in May 2015 we would enter the door of Waterford hospital anticipating a short stay that would see my beautiful first born treated for whatever ailment and back out to enjoy the summer with her friends. This however wasn't the outcome and the biggest blow I have ever been hit with was the diagnosis that my beautiful daughter had cancer.
Shan had a cancer so rare that none of the doctors treating her had ever seen a case before. I don't remember much in the moments I first heard. My legs shook and I felt violently ill. In that moment where my child was diagnosed, our lives changed. Not just hers, not just mine our whole family. Your child has cancer but your whole family is affected, your whole life.
The first day you walk into an oncology day ward is truly life changing. I didn't sleep a wink the night before and I had no idea what to expect. Unfortunately as Shan had passed her 16th birthday she was no longer considered a child and she would be unable to receive her treatment in a children's hospital. In my eyes Shan was still my baby, she was a child.
I sat on a chair beside my little girl watching the clear liquid run into her chest port while she lay back pale and tired with only a hint of the sparkle her beautiful brown eyes had always given. She was extremely nauseated with a headscarf covering her now bare head. In that moment my heart sank and I knew that this journey was going to be anything but easy. Every day for the five days we would travel over 100kms daily pulling over and holding a basin under my daughter to be sick at the side of the road and then tucking her back in with her head resting on a pillow and a throw covering her hoping that we would make it home quickly to the comfort of her own bed. I can't count the number of times that my silent tears blinded me on those drives.
It was on a long Google search that I found Dr. Kenneth Mc Clain, a world expert with the only histiocytosis research centre in the world. There was just one major problem, he was based in Texas. I emailed him hoping that he could answer some of the many questions I had and within hours I'd had a response. The relief I felt talking to a leading expert was the first time I felt hope since Shan had been diagnosed. I contacted the hospital the next day it was agreed that we would follow Dr. Mc Clain’s plan of 5 days consecutive chemotherapy infusions every 21 days.
Shan wasn't making any progress her lesions were worsening and she wasn't coping well with her treatment. We had remained in contact with Dr. Mc Clain and it was agreed that she needed to get to Texas and she needed to get there now. The costs involved with travelling and the expense of medical care in America was huge but thankfully we were prepared and with the help of a small army made up of family and friends we fundraised through bake sales and skydives. We shared Shan’s story with Independent.ie, radio, television and made a plea for the public’s support and we had raised just enough to make the first trip possible.
It was at this point that we received contact from John Glynn founder of The Gavin Glynn foundation. John had sadly lost his youngest son to cancer and had travelled to Texas for treatment and knew exactly how difficult our impending journey would be. We were blown away by his support and became hopeful that finally we were getting Shan the care she would need to begin her journey back to health.
The first day we stepped into Texas Children's hospital and met with Dr. Mc Clain I knew we were in the best hands possible. The coming days would see Shan undergo test after test and then came surgery day, Shan was a lot longer in surgery than we had been prepared for and with each passing minute it felt like another hour. Call it a mother’s instinct but as the time crept on I knew that something wasn't right. A while later myself and Garth were called to the recovery room where Shan had just arrived back from surgery. She was starting to wake and cried in pain, she quickly received extra morphine and began to relax falling in and out of sleep. It's at moments like this when your child cries your name with full faith that you are the only person in the world that can comfort them that you feel totally helpless and would give anything to be the one lying there instead.
The surgeon came to see us and explained that the surgery had been more complicated than they had initially believed and that they had removed a large amount of tissue which had been badly affected making the procedure extremely delicate and prolonged. Watching her sleep, I rubbed her soft cheeks and rested my face gently against hers wanting to crawl in beside her and just hold her.
We were told Shan's diagnosis was far more complex and far more severe than we had initially thought. He talked us through their findings and asked if it was possible that we could remain in the states for a longer period. Unfortunately we had drained all our resources and had two smaller children at home and had made no provisions for such a request. After a lengthy discussion it was agreed that Shan would return to Ireland and start a new chemotherapy protocol and return to Texas in ten weeks. I left the hospital with Shan and returned to our hotel, the enormity of everything hit me like a tonne of bricks and I had to get out of our room. Tears started to flow and totally consumed me.
We are now back from the States seven weeks and will return on June 3 until early July. Shan started a dual chemotherapy regime when we returned home. She hasn't tolerated it well and has had few good days. When she has a good day, she is exhausted for days after and can sleep for 16-18 hours a day. Her quality of life has been severely affected. When we return to Texas Shan will undergo numerous endocrine and neurological testing and will go through different chemotherapy combinations until we find one that she will not only tolerate but that will improve her condition. We have not received full costings as each test will tell what additional tests are needed. We have been told that there are some hugely expensive tests that they do not know if she will require until she has been reviewed and initial scans have been done. Just one of these tests comes at a cost of $16,000 and if she requires further surgery use of the operating room alone comes at a cost of $17,000. To put a price on the level of care your child can receive is something no parent should ever have to face but unfortunately if you cannot find an expert within Europe there is no government funding and you have to rely on the support and generosity of the public in order to fund your child's medical care. If I had anything of great value I would sell it in a moment if I thought it would get my little girl healthy and happy and living the carefree life any 17-year-old should.
Thankfully we have raised in excess of $30,000 since our return to Ireland with numerous fundraisers and the help of the Irish network in Houston and we have events over the coming weeks including a huge MotoCross Family Day at Sandy Valley Motocross Park in Castledermot on Sunday May 29. Thankfully The Gavin Glynn Foundation has stepped in and looked after our travel and accommodation needs taking this stress away from us. We need to raise as much as we possibly can prior to travelling on June 3 and would ask that if you can donate even a small amount please do. Every euro counts and gets Shan one step closer to a cancer free future.
Right now the journey is tough and we are just a couple of weeks off one year since diagnosis. It has been the most difficult and exhausting year of our lives. This time last year we were living a relatively carefree life where our biggest worry was would we have nice weather for my son's upcoming communion day and right now we don't see an end in sight.
We remain hopeful that sometime soon we will get Shan on a successful treatment plan and that maybe just maybe this time next year we will be close to celebrating the fact that she has reached remission. It will be thanks to you all that Shan will continue to receive the care she so desperately needs and thank you will just never seem enough. Treasure every moment and don't take anything for granted as in a moment life can change forever and it will be the little things that will mean the most to you.
For more information on Shan's campaign visit: www.facebook.com/HistiocytosisxjourneyforShanHistioWarrior