James lives every day to its fullest
A very special spooky party made this little boy’s wish come true
AS part of this week’s series to highlight the work of the Make A Wish Foundation, Karen, mother of James, tells how her child had a party to remember, thanks to the charity.
OUR eldest child James was born at 6.23am on the 18th Dec 2013 weighing a small four pounds. It was by far the happiest day of our lives, but also one of the darkest days because James was very sick when he was born, something we had never expected.
When James was just 24 hours old he was resuscitated and required life-supporting oxygen as well as a cocktail of drugs and blood transfusions. As the days and weeks passed, James hadn’t gained any weight and it appeared there was a problem with his blood.
We were transferred from our maternity hospital to Crumlin Children’s Hospital, where Dr Melanie Cotter and a more specialised team of doctors would try and figure out what was going on with our baby boy.
They soon discovered that James was neutropenic meaning his body wasn’t producing neutrophils and he was on a specialized formula to help him gain weight. We were trained on how to give James injections into his thigh to help his bone marrow produce neutrophils which would help his body fight infection.
We were shown how to make his specialised formula and advised to buy a good thermometer, keep him away from crowds and anyone who was unwell, before finally on February 20, 2014 we brought our baby home.
THE first temperature James got was about a month after we got him home. I cannot describe the fear that went through me as we sped up the M50 to Crumlin.
We didn’t know what to expect, was this the infection that was going to take our baby from us?
That’s how most of 2014 went for us, in and out of hospital with temperatures and infections and always that dreaded fear lingering. In November 2014 we met with Professor Owen Smith, one of the country’s leading paediatric haematologists.
He explained to us that the only way for James to grow up living a relatively normal life was for him to receive a bone marrow transplant. We always knew that this was a possibility but now the time had come. We had so many questions — would we find a donor? Would it work, would James survive the chemotherapy treatment?
Because James had no siblings at the time, we had to search for an unrelated donor for a bone marrow transplant. James was blessed to have two matches, both Irish men.
James was booked for surgery for a central line known as a Hickman so his chemotherapy and transplant could be administered without having to stick needles into his tiny hands.
His transplant was due to take place on December 8, just ten days before his first birthday. So in the middle of November we put up our Christmas decorations, bought a turkey, got balloons and made a birthday cake, even Santa made a special delivery for James. We had all our friends and family over for an early Christmas as we knew we would be in hospital by December. We had a great day and it really did give us the lift we needed. When all our celebrations were done we put the Christmas tree away and packed our bags for our long hospital visit.
Before he had his transplant James received eight days of intense chemotherapy to destroy his existing bone marrow and allow for the new marrow to graft. His hair fell out he was sick and he was on monitors 24 hours a day, seven days a week. On December 8 James received his transplant. It’s quite an underwhelming experience as it’s just like getting a blood transfusion.
Our thoughts were with the donor and how he was feeling after going under general anaesthetic to donate his bone marrow to a complete stranger. Was he comfortable, did he get tea and toast after? We hoped he had been made a fuss of after his selfless act, one which we are forever grateful for.
Another Christmas and new year came and went and finally, in the middle of January 2015, James was discharged from hospital, We still had to go through six months of isolation at home so James could recover fully from his transplant. But that didn’t matter to us because this was the beginning of a new life for James and for us as a family.
I would love to be ending it there and finishing with they lived happily after but that’s not quite how this story goes. After just five months James’s transplant failed. Our world came crashing down around us. James was losing his new marrow and was once again extremely vulnerable to infection. Several attempts were made to try and save his new marrow with top up transplants from the same donor but unfortunately this was not successful.
Professor Smith along with a world wide team of experts decided that a second transplant was the only option we had left.
How could we put our little boy through this all over again? But we know it was his only chance.
The rest of 2015 was spent going in and out of hospital with temperatures and infections.
February 25, 2016 was the date set for transplant number two. We spent James’s 2nd birthday and Christmas in our own house in December. It was bitter sweet as we knew we were heading back into Crumlin soon.
So February came and we headed into hospital for another long stay.
This time James received 10 days of chemotherapy and lost his lovely hair all over again.
O‘He is an inspiration to everyone he meets ’
N February 25 he received his second bone marrow transplant from a second unrelated male Irish donor. Five weeks later and we got home. Today we are three years, one month and nine days post transplant and thankfully James is doing great.
We go into Crumlin every few months for appointments.
In June 2017 James became a big brother to Jessica Rose and a bigger brother in February 2019 when we welcomed baby Daniel. It is magical to watch these three grow up together. We savour every moment with them because we know just how precious life is.
James is in primary school and enjoys the fun he has with his classmates — a milestone we never thought we would get to see. We remain hopeful that this transplant will continue to work and that he has a bright and happy future ahead of him.
James’s “Make-A-Wish” party was spectacular. It was his imagination coming to life, something we couldn’t have delivered and something that Make-A-Wish made possible for James. The entertainers were fantastic but it was Sally, a central character in The Nightmare Before Christmas who won James over on the day.
As a parent having watched our child go through the most difficult of days in his early years, to see him at his party full of confidence, full of magic, full of life was beyond our wildest dreams. It’s safe to say his party is still the talk of the school.
We are still getting through the cake and sweets and reliving the party through photos and videos. We can’t thank Sharon and all at Make-A-Wish who made our little boy’s dreams come true. They pulled out all the stops.
Thank you for everything — we are so grateful. A dream is a wish your heart makes and Make-awish made it come true.
James is getting stronger every day and there are no words to describe just how proud we are of him. He really is an incredible person, and an inspiration to anyone who meets him. He has such a great appetite for life and lives every day to its fullest. O To donate to wishes like this, please donate at makeawish.ie or text MYWISH to donate €4. Texts cost €4 and Make-A-Wish will receive a minimum of €3.60.