Family urges other parents to trust instincts

Henry Thompson (5) was a guest of honour at the Cancer Research UK Kids & Teens Star Awards party, held in partnership with TK Maxx in London.

The magical winter wonderland themed party was held in the middle of the UK’s summertime. It gave children and their families - some of whom have missed out on festive celebrations in the past due to cancer treatment - a memorable experience together.

Henry enjoyed taking part in a variety of winter themed arts and craft activities including decorating snowflakes, snow globes and gingerbread biscuits, as well as making reindeer head bands to wear at the party. He was also given an exciting opportunity to spend time with Santa in his winter grotto.

Henry was diagnosed with leukaemia in December 2015 and his parents, Helen and Ian soon became very aware of the upset a cancer diagnosis can cause within a family.

When their three-year-old son Henry began showing signs of acute tiredness, Mum Helen put it down to the fact that he had just started nursery school. However, as time passed, she noticed he had lots of bruises and was complaining of a sore stomach when walking and a sore back and legs when playing on the floor. His appetite had decreased and he was having night sweats. His lips turned purple after his baths.

Helen knew something wasn’t right with Henry and asked for blood tests to be done.

The doctor immediately sent Henry to the Royal Victoria Hospital for Sick Children where a series of tests were carried out.

It was then, just weeks before Christmas, they were given the devastating news that Henry had Acute Lymphoblastic Leukaemia (ALL).

Helen said: “I adore all my boys. As their mother, I want what is best for them. I want to give them love and happiness and to shield and protect them from as much hurt as I possibly can. So to be told one of my children was seriously ill was devastating. My precious son’s life was now in the hands of doctors and nurses I had only just met. I just kept hoping it was all a bad dream and this wasn’t really happening.”

She added: “The numbness I felt got me through the first few days after his diagnosis. As I look back I don’t know how I functioned at all. I still had a baby to get home to who I was feeding and a two-year-old who had very suddenly been separated from his big brother for the first time. Siblings were not allowed in the ward, so I had to start bottle feeding my baby for practical reasons. I was emotionally exhausted.”

Ian added: “Henry was allowed home for a few hours on Christmas Day and he absolutely loved being at home with Oliver, his two-year-old brother, whom he hadn’t seen since December 10.

“We let the boys open the door to the living room together, to see what Santa had brought. They played like any brothers would for about half an hour, but Henry very quickly tired and soon after we headed back to the hospital which was our ‘safe’ place to be. We were petrified of being outside the care of hospital staff as in the haematology ward they really are amazing, often going above and beyond what’s expected of them.”

As the treatment began to take hold, Henry started to find things more difficult.

Ian continued: “Seeing your normally chatty child sit for days in the same position only moving their eyes was tough to bear. The first time he collapsed in a heap on the way to the toilet, as he was just so weak, was a reminder to me if I needed it just how sick he was.

“Taking the medicine was a real trial for Henry, he didn’t like the taste of them and they caused him many side effects. He also couldn’t understand how the medicines were good for him, as all he could see were their immediate effects which were making him feel ill.”

Henry continued receiving intense treatment for about seven months. This involved some stays in hospital but at other times, the chemotherapy was able to be given by Macmillan nurses at home or as an outpatient at the hospital.

Helen continued: “The fear of infection affects and changes the lifestyle of the whole family. We largely stayed at home, with a very limited amount of visitors, to try to protect Henry. However, we had lovely family times and special memories at home together during this time. We can see a really special and close bond between our boys which we are very thankful for.”

Henry, now 5, is on a less intense phase called ‘maintenance’. For this, he takes oral chemotherapy every night. He attends hospital either weekly or fortnightly for blood tests and a general check-up, to see if his medicine needs to increase or decrease. This will continue for another two years approximately.

Helen added: “We’re very thankful he has kept so well and, as a family, we can now have days out. Meal times can be lengthy, as Henry still has a lot of difficulty with his appetite and struggles to eat. However, he manages to remain cheerful and always tries his best. We are very proud of him”.

Henry has just received his report from school and he has done really well.

Ian said: “His teachers have been amazing. They do all they can to protect him, such as using hand sanitizer in the class and keeping us informed of any sickness in the class. He missed virtually all of nursery, so he didn’t get the experience that a lot of the other children got, playing with each other. However, the teachers and classroom assistants helped his confidence immensely and he is now happily playing away with his class mates. He is academically very able so that aspect is fine for him, but the social side and the steep learning curve of the playground is what we send him to school for. We had considered home schooling until the treatment came to an end, but we are glad we opted for school as he absolutely loves it. We also send him to piano lessons - it is something extra he can do as he can’t go to BB, scouts or sports clubs as it’s not as controlled an environment as the school.”

Ian and Helen are keen to tell people to trust their own instincts, as parents, if their child becomes ill. Ian added: “Henry was still a very happy active boy, but all the wee symptoms together just didn’t sit right with us and, thankfully, we persisted and eventually got a diagnosis.”

Helen said: “We know there is a long way to go and we’re anxious about the future but also thankful for how far he has come and how well he has coped to date. I believe he’ll be stronger in character because of this and feel so proud of how my precious boy has coped with all he has been through. It is such a privilege to be his mummy!”