Alyssa’s Journey Through Discovery & Treatment of Childhood Leukaemia

Our beautiful daughter Alyssa came into this world on the 17^th of January 2017

She may have been a little reluctant to come out being two weeks late but when it was her time to come into this world she was quick to see everyone as I was only 15 minutes in the delivery room. We were absolutely delighted to see our little superhero, she was so small, cute and adorable. Alyssa was always a strong-minded girl, independent and full of life and energy. We lived in Dublin Ireland, and my husband got an opportunity with work to travel to Boston, it was a tough decision to move as we had no family over in America and moving with our young family (Dylan 9 and Alyssa 1) would be a difficult transition, but this was a great opportunity to experience a different lifestyle. We moved to Boston on the 1^st of September 2018 and moved into a beautiful house in Watertown. We enjoyed living in Boston as we got to enjoy free splash parks for the kids, walk through Boston Common and feed the squirrels, walk through the Science Museum and experience the Boston winter snow. We could even enjoy some home comforts as there is a lot of shops in Boston which stock Irish products, so we could always get a packet of Tayto crisps if we were ever feeling a little homesick.

Everything was going fine, we travelled home in February for Spring break, but about 3 weeks after that we noticed that Alyssa was not so energic. She was sleeping a lot more and really wasn’t herself as she wasn’t keen to play

At the start we just thought she had a cold and managed her temperatures with ibuprofen

After a few days of constant high temperatures we went to our local urgent care centre, where they told us it was an ear infection and gave us antibiotics. After a week of being on these antibiotics nothing had changed she was still the same. We then took her to the hospital, where they examined her and said that the ear infection had now spread to her left ear, so they gave us a stronger antibiotic and sent us on our way. However, within a matter of days she hadn’t got any better and had now developed little spots on her arms and legs, we thought she could have chicken pox which would have explained how ill she has been, so we took her to see a paediatrician and she told us to go straight to the hospital to get a blood test. We got to the hospital and they took her bloods, as we were waiting around we just thought it was going to be viral we never imagined it was going to be leukaemia. Two hours later two doctors came into the room and said that all her blood counts were very low, and they suspect this could be Leukaemia.  They took another sample to do a test called flow cytometry which would give them a definite answer as to whether this was Leukaemia or not. We just couldn’t believe what they were telling us, I asked the doctor could it be anything else, and in my head,  I thought they were wrong. Because less than a month ago she wasn’t like this, she was running around and so happy and full of life.

They admitted Alyssa straight away while we were waiting for the results the next day.

This was the hardest 12 hours ever waiting for the results to come back, we also have a 10 year old son and living in Boston we have no family so had to get neighbours to take him overnight. The next day at 12 we found out that it was B-cell leukaemia, we just started crying and couldn’t believe what was happening. We were told treatment would begin for Alyssa immediately, and that she was likely to remain in hospital initially for at least a month as her blood count was so low, she was kept in isolation due to the risk of infection. Treatment began immediately, and since being diagnosed, Alyssa had to undergo surgery to have a port fitted in her chest for her medication, has undergone many spinal taps, chemotherapy, and much more. At the start of her stay in hospital she wouldn’t want anyone touching her. When nurses walked into the room, she would have a meltdown tell them to go away, push them away, kick and scream. It’s very hard to see her going through that.

We find every time we have to let our daughter get knocked out to get some of these treatments is always the hardest part.

Having to watch her fall asleep and walk away. When she wakes from the anaesthetic from a spinal tap, she can’t move for thirty minutes, you basically must hold her down in case she does damage to her spine. But how do you explain that to a two-year-old, so you’re stuck trying to comfort her through it, that’s all you can do. Alyssa is now several months into her treatment and doing extremely well.

She is in her 4th phase of treatment called delayed intensification

This is known as one of the toughest phases and one which myself and my husband are the most worried about.  Alyssa has tolerated her previous phases very well and has come through these phases like our little superhero, there were some tears but mostly smiles and laughter which made it a lot easier. This treatment plan takes a little over two years and Alyssa’s two years started at the start of Interim maintenance 1 which was 10/06/2019 which means treatment will finish 10/06/2021.

In December, she will start into what is known as the maintenance phase of her treatment, which will last for the remainder of the two years. We were given the go ahead that we could return home to Ireland in August as planned, Alyssa will be able to receive the same treatment in Dublin as she is currently undergoing in Boston.

You hear of people getting fobbed off with it’s a viral infection, just ask for a blood test.

Our paediatrician who sent us back to the hospital told us to push for one, without that, it would have been another antibiotic, it could have been ages before we found out who knows.

We never thought we would know the signs and symptoms of leukaemia but now we do we feel this is something people should know as this can happen to anyone.

We want people to be aware of the signs and symptoms of leukaemia as this is so important to get diagnosed early

Alyssa was very tired and weak, she wouldn’t be able to walk very far without being tired, a few days before she was diagnosed she developed little red spots which were actually tiny bruises on her legs, arms and back of her ears, these are known as petechiae and this is a very common sign that blood platelets are extremely low.  Alyssa also suffered from daily and nightly fevers on and off up until she was diagnosed and was always exhausted napping for hours during the day.

[simple-author-box]