Irish teenager pens an emotional blog about her cancer battle: 'I'm not sure what you're angry at. The disease? The world? God, if there is one?'
It’s hard to decide where to start. About eighteen months ago I attended my GP because I knew that something wasn't quite right. I had just turned 16 and I was exhausted... I mean really really exhausted.
My menstrual cycle had stopped, I had sore skin lesions and my scalp was on fire with more lesions that looked like a cradle cap covering parts of my head.
Everywhere hurt, my beautiful thick locks were thinning and to top it all off I had developed a severe unquenchable thirst. If you think of yourself crossing the Sahara desert and having no water you are getting close. Off I went to the GP where I was tested for a multiple amount of infections and viruses and tested for diabetes melitus (sugar type diabetes). I was put on antibiotics, anti virals and pain medication (you name it and my GP tried it) but every test came back negative. We tried steroid creams for lesions, different anti virals and yet another check for diabetes. Everything once again came back negative and to say I was frustrated is an understatement.
My GP decided that I should be referred to a specialist and so sent the referral to Waterford Regional Hospital and the wait began. Unfortunately, I wasn't making any progress and my symptoms were becoming worse
I returned to the GP my mam again but I was not in a good way. My mam had come prepared with a hospital bag and wasn't leaving without a referral which thankfully my GP agreed was necessary. She wasn't sure if I would be kept as an inpatient as she figured it was probably inflammatory.
Last May, I arrived at Waterford Regional Hospital and within an hour I was in a bed and had been seen by three doctors. They were all baffled but could appreciate the severity of pain I was in and the many sore lesions I was coping with. They too believed it could be inflammatory. After intravenous antibiotics and no sign of any improvement, the dermatologist went through a full body check and it was then decided by both my doctor and her that I would be taken to theatre for a biopsy.
The dermatologist was unsure what the lesions were caused by but to our relief she didn't believe them to be melanoma. After the biopsy, the dermatologist spoke with myself and my mam and said she had done some research and believed she might know what it could be but that it was so very rare she couldn't be sure until she got the results back.
She believed it to be something called Histiocytosis X or Langheran’s Cell Histiocytosis. This illness usually shows up in much younger children but I was showing a lot of symptoms and if it was proven to be Histio I would be only the 16th noted case of this type of cancer that my doctors were aware of. Within 24 hours it was confirmed that my biopsy results were consistent with Histiocytosis X, next my biopsy would have to be sent to Dublin for further testing and it would be approximately three weeks before it would be confirmed. Three weeks felt like three years and my mum and I headed back to hospital for the dreaded results. They were in and it was confirmed I had a rare autoimmune cancer and it was called Histiocytosis X. The word cancer is not something you ever believe you will hear at 16. In that moment I began to crumble and my mam went pale. The rest of the appointment went in a blur, ‘You will need this test, this scan, hormone checks,MRIs’. I still can't remember leaving or the drive home it was all surreal like an outer body experience.
We went back and had the MRI and other tests and had three days to wait for the results. When they came back it was confirmed that the hypothalamus and pituitary gland were also affected hence the lack of hormones. My unquenchable thirst was a result of diabetes insipidus (hormone/kidney related diabetes). I now had multi system Histiocytosis and would need to see a specialist.
I was referred to Crumlin Children's Hospital where they had a specialist who had seen a couple of cases over the years one problem I was nearing 17 and was no longer considered a paediatric patient. My mother was furious as she couldn't understand how an age could be put on such a rare case. Here was someone familiar with Histiocytosis yet I was over the age limit?
My mum became obsessed and searched every link and case study on the Internet. She even contacted a lady from Longford who has a young daughter with a similar diagnosis for whatever information she could get. Then she came across a Histiocytosis world specialist, a guru if you like. This was Dr. Kenneth Mc Clain. Dr. Mc Clain sees 100 cases per year from all over the world and has had a massive impact in the Histio world with no recorded deaths in a decade for patients attending his clinic, undergoing his care routine and going through the many pilot trials he offers.
The problem he was based in Texas!
Regardless of this my mum decided to contact him and to her surprise he responded promptly and from there she got more information than she thought was possible. It was agreed that Dr. Mc Clain’s recommended care plan would be started in Waterford Hospital while we would keep him updated with my tests and progress. I will undergo a long chemo routine of 5 days cytarabine every 21 days for the next 12-18 months.
We also agreed that I would travel to Texas Children’s Hospital following 5-6 rounds of chemo here. So our aim is now to make our first trip in January. When I get to Texas I will be tested and checked for gene mutations and will then have a clearer picture on what trial will work for me. It's all very positive in that I have a huge chance of killing this disease forever without fear of relapse it’s just one big curb ball.
I need to make a minimum of three trips and it is estimated this will cost in the region of €100k. Now for a lot of people this would be the end of any hope but not for my mam. Immediately she set up a committee got all the information she could and set about starting a major fundraising campaign. Within a couple of weeks we had over 12 volunteers made up of family and friends who were willing to put their time and energy into helping us.
I was so overwhelmed... in fact I still am. Without the help and support of everyone who is involved this journey I'm about to make wouldn't be possible. The road is a tough one with any cancer I imagine and mine has been far from easy. Because of my central nervous system and scalp lesions my hair was thinning for over a year. It got to a point where I had a few strands in a high pony trying to disguise my balding head and my hair was shedding whenever I touched it. It was at its worst in the shower where I would cry as I watched it float around my feet. I can't bring to words the exact emotion that overwhelms you but I'm sure that anyone that has gone through losing their hair or had a family member can understand the torment. I decided that I would take control and with three strokes of a hair shaver controlled by brave Aunt Tasha (a cancer survivor herself) it was gone and I was now free!
I was surprised how good it felt to take back some level of control and it helped that I didn't feel ugly. I actually thought I could pull it off and felt good.
So now we come to today. Round 2 Day 3 and, jeez, I feel rough.
The last couple of days I've been so very nauseated and exhausted. I actually think I could sleep for a hundred years if it wasn't for the fact I have to wake to drag myself to the bathroom to vomit. It's when you’re on the floor in the bathroom resting your face on a toilet seat with your mam rubbing your back that you feel these moments of sheer weakness (by the way the rubbing doesn't help but you know she's trying to comfort you). It's these moments of sheer weakness that truly make you angry at this disease. It's then when you feel totally helpless and know you’re sick.
I'm not sure what you're angry at. The disease? The world? God, if there is one? Then comes the ‘Why me’?
Really why me?
Later I will feel better and throughout it all I will smile because if I don't then I will cry.
I don't want sympathy I just want to win this battle. Everyone tells me I'm strong and honestly when I look at everything I feel strong, the weak moments done define me the strong ones do.
They get me to tomorrow and give me a peek into my future, the future I want full of love, travel, adventure and good health.
Someone once told me that life only gives you what it knows you can handle so in a way I'm clinging onto that in the hope that I will fight and I will survive the battle and that along my journey I can hopefully make people aware.
Throughout our fundraising I hope that we have done that and people will now have an idea of what Histiocytosis is. I want to thank everyone who has helped from bag packing to table quiz, shave, wax or dye where my nan and a family friend shaved their heads in support of me and my step dad Garth who had his beard waxed!
September is Childhood Cancer Awareness month and also it marks Histiocytosis Awareness Month, so spread the word and go blue for Histio!
Today we have a Shan’s Hour fundraiser where a couple of my friends have set up an online event to donate one hour pay to help me. That one hour can make a huge difference to this campaign. Here's how you can help at www.idonate.ie.
We also have a run ‘Walk or Crawl "Histio Warrior 5k”’ on Sunday September 20 at the Curragh Racecourse and there are plenty of fundraisers in the next few months.
Thank you to everyone for supporting me and helping me to make this journey to Texas become a possibility.
For more information on Shan's campaign visit: www.facebook.com/HistiocytosisxjourneyforShanHistioWarrior