A little journey with A.P.T

Meet Ciara Mulcahy, her sister Amy and Father John. We had the pleasure of their company at our last meeting on the 6th of July to explain a little bit about their story.

In early 2015, Ciara at the age of 6, found traces of blood in her urine which triggered a visit to the doctors from her parents with query kidney infection. A well, fit and healthy young girl, who had nothing bar cold and flu like symptoms in the past, was seen and what happened next was the start of a long process which affected the family greatly.
On the 18th of February, Ciara and her family immediately visited their local hospital, Limerick General, now known as University Hospital Limerick. Through many visits here, and many samples later, on the 23rd of February she was moved to Crumlin Children’s Hospital in Dublin. By the 24th, Ciara had met nearly every doctor in the ward. Following on from all scans, tests, samples etc, it was confirmed that a cancerous lump was found on little Ciara’s kidney measuring a staggering 150mm. At this point, both parents John and Mairead, and their other daughter Amy, knew they were in for a tough journey.

On the 27th of February, Ciara endured a 9hr operation to remove this lump from her kidney, leaving her with a single kidney remaining. In the 4 days from the Friday to the Monday, the weight of the cancerous lump had gone up 300g, equivalent to a tin of soup.
Following all of the treatment, Ciara was due 9 courses of Chemotherapy, each lasting 3 days and 42 hours in total for each session. This therapy was then administered every 21 days over the next few months. As infection risk was extremely high, a tube had to be inserted into her neck in order to retrieve blood samples and to administer treatments. Infection to this opening could have detrimental consequences so constant monitoring was a must. If a temperature reached 38.5 degrees, this is when chance of infection is at its highest. Day 10, following the chemo, was considered the worst. From here over the next 4 days was the lowest of the low with regards the immune system where there is just nothing left in Ciara’s body to fight infection. Multiply this by 9 and you had 36 days of the body having absolutely nothing to give. A helpless young beautiful girl, looking for the support of her family and friends during a time when she could not fight for herself.

Chemo the Duck was her friend throughout the whole operation, and this was kindly given to her by Aoibheann’s Pink Tie to outline to Ciara, and others, what exactly was going on. Chemo shows the duck in its scrubs from the hospital, along with a version of the tube that was inserted into Ciara’s body. This was Ciara’s lifeline. Also note Chemo’s bandana which Ciara had, during her time in treatment as she had lost her hair during the process.
In May of that year, Ciara then visited St. Lukes ward where radium treatments could begin to clear out any infected areas. Travel to Dublin had to be completed as there were no hospitals in the south of the Country to administer Radium treatment. While here, Ciara found another friend called Charlotte, and they grew together during this time to become best buddies.
Charlotte was diagnosed with Cancer of the brain. They went everywhere together within the ward and shared lots of stories. Because Charlottes brain tumour was being treated with Radium, she had to be anesthetised every morning before treatment, a huge endurance of the human body, let alone a child’s. On the 12th of September Ciara had finally finished all of her Chemotherapy treatments and on October 20th, Ciara then finished her radium treatments.

Once Ciara was out of the wards and finished treatments, she still had her new best friend (bar Chemo the Duck) up in St. Lukes. Her father, John, was never a runner. But over in Castlecomer, Co. Kilkenny, where Charlotte is from, her family and friends organised a 5km run in order to help raise funds for the vital treatment Charlotte needed in order to keep going with her treatments. It was a great success on the day and many flocked from far and wide in order to help out where possible. The awareness was raised greatly about what Charlotte, and many other little boys and girls have to go through on a daily basis. As John said himself, it is awareness that is one of the greatest gains a charitable organise can collect such as Aoibheann’s Pink Tie.
But in 2016, after all the efforts of Doctors, organisations, treatments etc, little Charlotte found her wings and passed away. This was the hardest time for little Ciara and both families. Cancer had taken a hold of little Charlotte and did its worst. Not only this, but a local neighbour to Ciara also lost a child due to this terrible disease. Emotions were at an all-time low at this point.

Ciara had to go through trial and error with eating as part of the process with kidney removal as her bowel had to be moved during the operation. The lining on the outer part of the wall was so thin, that anything could have easily ruptured this causing greater damage to any regenerating child. It was then on, that Ciara had to be drip fed, using a tube that was inserted into her nose. It was advised that 4 teaspoons an hour would suffice for 8 hours of the day. However, her body was not able to take to this amount which in turn had her vomiting her food back up. She could not even take 3 teaspoons and hour…. not 2 …. but ended up that the body was only able to take 1 teaspoon of food an hour which in turn brought her immune system back down again.
Whilst in hospital, we do not think about ourselves should our little one need treatments. We have to work in order to live and provide for our families. Travel expenses, mortgage repayments, lunches, snacks, accommodation, everything, has to be thought of also, but this is extremely tough when all of your focus is on your little boy or girl, stuck in an isolation unit of a hospital. And this is where you rely on your friends and colleagues around you.
Johns work was very accommodating during this tough time and following treatments, moved him to a 3-day week. John really wanted to be with little Ciara all of the time naturally, but what his work done was a beautiful gesture. During Ciara’s time in the hospital, Johns work also helped him with his full weeks wages which helped cover many expenses that his family had to endure. All of this was done in order to be able to spend the time with his precious little girl in her time of need.
John then openly spoke to us about the work and dedication the charities have towards the families of child cancer victims. He said without them, their time in Dublin would have been so much worse and harder. Jimmy and the crew from Aoibheann’s Pink Tie were there for the family at every port of call.

“It is not until you are in this inner circle of Cancer Treatment that you realise exactly what Aoibheann’s Pink Tie does for you”.

They have a room set aside full of pyjama’s for both children and parents. Sometimes Ciara had to go through possibly 3 or 4 sets of pyjamas each night due to sweat etc. They have various bandana’s for children to choose from. They have “Chemo Ducks” there for all the children to help explain about what is going on with their body’s. They send a gift to the kids and other family members on their birthdays to show that even after the ordeal, they are still thinking of you. Emotionally, mentally, physically and financially, Aoibheann’s are there for you and it is amazing how they remember everything else that you may not. They are a family minder; it is not just about the child enduring the procedure but the constant welfare of the family members too. Every Christmas, the family receives a hamper delivered by DHL. Before Little Charlotte passed away, APT brought her to Dunboyne Castle, where they hold a party twice a year for all the kids. They brought her to her favourite bands concert, 1 Direction, and she got to meet the band backstage, all while being escorted by our colleagues in An Garda Síochána.

“Nobody goes home from Dunboyne without a teddy, it’s unbelievable! They do not receive anything from the Government, so all funds are really, really appreciated. A bucket collection would be hugely beneficial to this charity”.

John spoke about his flag that he brings around everywhere he goes. An avid GAA man himself, and a proud supporter of the ‘Shannonsiders’, this flag goes to all the matches but is personalised towards the awareness of Aoibheann’s Pink Tie and what they did for the Mulcahy family.

“Awareness is the single greatest reward for this charity, and it needs to be known across the country. In order to create awareness, and to be able to keep this generous organisation going, it needs the funds”.

And this is the part where we, the Retained Firefighters of Ireland, wish to step in.
John, on first arrival to Crumlin with Ciara, could not get a room in Dublin close by in order to be able to be near his daughter. The nearest place he could get a room was in Celbridge, 20km away. What the NRFA have planned with APT is to secure a site that houses can be built on to accommodate a family during their time of need. From staying in a house previous (Ronald McDonald house), John said that it is amazing the feeling of having that home from home to arrive to after your time on the ward. Not only that, you may be staying in the house with another 1 or 2 families and the warmth and comfort you get from being able to speak openly about your time in Crumlin is a huge factor for your mental strength. It would sort so many issues with overnight stays while your children are in need.
Aoibheann’s Pink tie could not do more for the Mulcahy family during their time and John is testament to this cause. He could not speak highly of how the organisation were there for himself and his family and is now trying to do his best for APT. Since running the 5k for little Charlotte, John has ascended his way up to half marathon standard now, all the while representing the APT organisation with his dedicated flag to the cause. Before completing the half marathon, he wondered should he do it when his wife Mairead turned to him and said “If Ciara can fight off the pain, you can too”, and it’s this drive and determination that John took in order to achieve this and many other goals on behalf of Aoibheann’s Pink Tie.
We, the NRFA and its members, wish to thank John, Ciara and sister Amy for attending our meeting and speaking to us openly about their journey. Hopefully this article will give you an understanding as to what this courageous family had to go through. We have to remember that they are not the only family that had to go through this. There is nobody in this country that cancer has not affected. We will end this article with this final message from John:

“Whether it’s a fire, or if it’s cancer, everyone needs help and a shoulder to lean on”.

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