2018 changed our lives forever
In January of last year the youngest child in our family of ten, Abbie was diagnosed with Acute Myeloid Leukaemia (AML). We were informed Abbie would have to have a six month stay in hospital that would consist of intensive chemotherapy treatment. Abbie was about to begin the battle for her life.
This was the hardest part of the year, we just didn’t understand what was going on or what to expect. All we knew was Abbie had to come first and sacrifices would have to be made. My wife, Jackie and I and Abbie’s sister Rachel all had to take time away from work to be by Abbie’s side and we will never forget the love and support we had from all of our work colleagues, family and friends.
By the beginning of February, Abbie had received the first of many blood transfusions and was about to start her first block of chemotherapy. Abbie was ineligible for a new chemotherapy trial as she’s Down syndrome. This increased our concerns because we wondered how our little girl would be affected by the chemotherapy treatment. I think the unknown was the worst part.
Abbie reacted well to her first cycle of chemotherapy and had begun to settle into hospital life making friends with other patients and the doctors and nurses. Being in hospital almost full time had a calming effect on the family, because you’re surrounded by medical professionals all the time and people in similar circumstances to your own. However, this calming influence quickly disappeared when we left hospital, our thoughts would immediately return to Abbie and we still found talking about her diagnosis very hard, to the point we started avoiding people.
We were showered with love and support
The love and support we received from the wider community was almost overwhelming. Money had been raised from a JustGiving page that had been set up, ‘Abbies Journey’ wristbands, badges and t-shirts had been sold, all to raise some money to help us pay for the costs associated with travelling back and forward between the hospital and home.
A psychic event was held for Abbie and we also had the annual 10 hour football marathon where I’ll never forget the moment she came running onto the pitch and into my arms to present me with a rose. In late March, Abbie was allowed to return home for a little while which was very exciting but also very nerve racking, we found ourselves constantly checking her temperature. Administering medicines at home was very difficult, we had to physically restrain Abbie to get the medicine into her, which would often result in her being sick straight away.
Abbie’s treatment was exhausting
By the end of April, almost all of Abbie’s hair had fallen out, we’d been in and out of isolation but she didn’t let any of that affect her. One of the hardest things we had to do was watch Abbie have her central line and NG tube put in, watching your child go through this is horrendous. It was a god send though making it much easier to administer medicine and get vital fluids into her.
At the start of June, Abbie started her third round of chemotherapy. This round was slightly different to her previous two rounds as we were told to expect more side effects including nausea, vomiting, diarrhoea, skin rashes and kidney and liver damage. It was at this time I handed in my notice at work, with Abbie going through what she was going through, I couldn’t dedicate the time required to the job and thought it was unfair if I continue in the role.
The end of our scheduled six months of treatment
We found ourselves toward the end of Abbie’s treatment giving advice and reassurance to new families coming through the hospital, this seemed to be the cycle everyone went through, you start out not knowing much, then you begin to understand a little and finally you’re passing on advice by the end. This created a very special circle of friends for us. People who’ve been in the same position as us and people who’ve felt the same feeling as us, the kind of friends you may not see every week but the ones you will always remember and keep in contact with.
On the 8th of July on our way into the hospital we found an Isla stone, this was the birth of ‘Abbie’s Journey Stones’. This is a way of spreading the word about Abbie and children’s cancer and it snowballed to something beyond our expectations. On 24th July, Abbie got her first passport photos done and flew to Lapland (in Finland) in December! Then finally on 17th August we got the news we’d all been waiting for, it was finally time to go home! In a strange way after a few days of the initial high, we felt a bit anxious because our safety bubble was gone, but it was great to be finally going home!
The milestones keep coming
Abbie has continued to achieve so well since coming home. She’s had her central line removed, she’s gone back to school and she went swimming for the first time in eight months! Going through what we’ve gone through with Abbie has made us start to appreciate the little things, and everything and everyone that puts a smile on Abbie’s face warms your heart. It’s hard to describe the tears you shed watching your child going through cancer treatment, you go through such a range of emotions, but the last year is best described through fear, heartache, misery, hope, kindness and love.
I don’t think we’ll ever stop worrying about the future, or if the cancer will return or whether there’ll be any long lasting effects from the chemotherapy. There’s nothing we can do about that, other than try our best to put a smile on our little girls face. It would be remiss of me to not say a word or two about the unfortunate families who lost their angels, at least three children who crossed paths with Abbie are no longer with us and our thoughts and prayers go out to those families because no one should have to go through that. Finally a massive thank you to all the doctors and nurses at all the hospitals who have worked so hard to help look after our little girl. We’ll never forget you.
Update April 2020
Abbie is now 10 years old and has been doing well, carrying on her life as though nothing has happened.
She has had heart scans that have come back looking good and the reviews are now less frequent. She is having her kidneys monitored, as one of them is not working properly due to the damage from the chemo.
Update June 2020
Abbie sadly relapsed at the beginning of May and is currently in hospital having treatment. Like last time, it started with an eye infection and from the blood test, they had suspicions that something was up. They did a bone marrow test and it was confirmed.
We are not sure yet what lies ahead. Abbie has had a five day course of two rounds of chemotherapy and then when her blood counts recover, they will do another bone marrow test, the results of which will decide what happens next. This is really horrible for us as last time we knew what was in store in terms of her treatment, but now we don’t know. She is also going to be put on beta blockers because the chemo she had in 2018 damaged her heart.
Despite everything, she is doing well. She’s had a couple of bad days but is taking it in her stride and remains upbeat.
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