Update Sept 18: Ringing the End of Treatment Bell
“It’s hard to believe that we got here – it’s been a long, long struggle. But we have come to the end of the tunnel. Dylan’s ok, the family is ok. It means the world to me we have come through it. At the moment he is just getting over his side effects. He is still having a lot of problems with his mobility, skin and psychologically as well. It’s a big deal when children are diagnosed, staying in hospital. They are away from family and then, all of a sudden, it’s all over. They have to deal with getting back to school, meeting up with friends again and being able to join in. I think that’s a big thing for him at the moment.
We recently had a lovely day out as a family at Zippos Circus, that was brilliant. It was an event where we could just be ourselves, chill out and we had fun together. We met other families that were or still are in the same position as us. Children with Cancer UK have helped us a lot with the days out, the communication and all the funding that goes into helping children with cancer. A lot of cancer charities don’t actually fund research in to childhood cancer and we know that Children with Cancer UK does. That’s a big thing for us parents.
My message to other parents and children currently receiving treatment is that there is light at the end of the tunnel. Everyone’s diagnosis is different and how they react to treatment, but our children are strong. Just love them, be there for them and hopefully you will get through.
Dylan said: I feel GOOD – we are going to celebrate with a party for ringing the End of Treatment Bell at Willows, Croydon Hospital and my 11th birthday on Saturday with, cakes, bouncy castle and lots of food.”
“Dylan was having high temperatures in the evenings. When we took him to the doctors, during the day, they could never find anything wrong apart from swollen glands. They gave him a course of antibiotics, but the temperatures continued.”
Dylan wasn’t himself
“Dylan wasn’t himself – I knew something was wrong. Rather than join his brothers playing, he preferred to snuggle on the sofa with me.
When we noticed that Dylan had a swollen wrist, my husband and I decided to take him to hospital to get it checked. I explained my worries to the doctor we saw, explaining that his symptoms were reflective of an article I had read where the child was diagnosed with cancer.
I was completely prepared for the doctor to tell me I was overreacting. But they took me seriously and examined him thoroughly and did blood tests.”
Coping with the diagnosis
“I knew it was bad as soon as the doctor asked to speak to us in private. Although cancer had crossed my mind I never believed Dylan had it. We were totally shocked and heartbroken for him. I remember just bursting into tears with my first thought being that he’s going to die.
It was very hard since we had six boys ranging from 1-17. We were told that Dylan would have to be kept in hospital for further tests and treatment. I’m disabled and my husband is my carer. We asked my cousin to pick me up, and my mother-in-law to stay over to help me.
We had to explain to Dylan he was poorly with bad blood and needed to stay in hospital. He was so upset that I couldn’t stay with him, but accepted that daddy would be with him.
The next couple of weeks went by in a sort of daze. We learnt Dylan had Acute Lymphoblastic Leukaemia (ALL) and were told what type of treatment he would need. I also had to explain to him that he had cancer – I didn’t want him find out from someone else. I was taken aback when he replied “am I gonna die?” Of course he’d heard about cancer, and many times it’s associated with death.
My oldest son Lamar had a panic attack a few days after the diagnosis. It was very frightening – he collapsed and was clutching his chest but thankfully the ambulance crew were great. He was allowed home after observation. I think Dylan’s diagnosis had a huge impact on all of us. Those first few weeks were extremely hard to cope with but we had excellent support from family and friends.”
The pain, discomfort and side effects of treatment
“Dylan was put on regimen A for treatment which was intense to start with. The intravenous therapy (IV) was taking its toll. Every time they poked him he would scream in pain. So he had a port put in to make administering the drugs easier. It was tough seeing him getting prepared for his operation.
He was given lumbar punctures to test the fluid and to put the chemo in directly. All other chemo was given through his port and up until now that’s how he is accessed for weekly bloods and chemo, although he does take oral chemo.
Dylan was also on steroids, which saw him balloon up and his mood swings became intense and frequent. That was hard, and is still hard to deal with because it’s not the Dylan we know.
There are constant side effects of all the treatments including mood swings, hair falling out and mouth sores. Any sign of a temperature means he has an infection and has to be admitted to our local hospital, which has happened many times.”
In remission, but for how long?
“As I write this Dylan is in remission, but I’m fully aware that he can relapse at any time. It’s hard to rejoice until all his treatment is over – I know we are all still walking on egg shells.”
“If anything positive has come out of Dylan’s diagnosis it is all the help and support we’ve had from family, friends and complete strangers.
Days out with all our boys are few and far between, but so greatly appreciated at a time when smiles and laughter are rare.”
Lorraine has since sent us the photo of Dylan and the dolphin, taken in July 2016, on a family trip to Florida organised by the Rays of Sunshine Children’s Charity.
“Dylan is doing okay at the moment, he had a very long absence from school due to being neutropenic and chicken pox spreading around school like wildfire. After long absences he gets nervous about returning and is clingy to me and gets anxious but he copes really well and his school is amazing with helping him settle in and making sure he’s up to date on what they’ve been up to so he can fit back in easier.
He’s had some problems with leg pains due to side effects of chemotherapy. They referred him to a physiotherapist, who in turn also referred him to a podiatrist for specialist insoles. Dylan has been given exercises to do at home to strengthen his muscles and will be starting hydrotherapy next week, we are hoping these treatments work and he is pain free and walking ‘right’ again soon.
Most of the time, Dylan is very upbeat and gets on with whatever is thrown his way but still gets down sometimes with side effects, especially the hair loss, I think he feels he stands out too much. Sadly for him his class is going away camping for a couple of days and he can’t go so is a bit upset about that; he hates to feel he’s missing out and is worried about his friends making memories together that he can’t be part of.
Dylan’s treatment is going well and we are all overjoyed that everything is running smoothly (apart from certain side effects) so we are really grateful for that. I often wonder why us? Why Dylan? And still can’t find answers to that but I suppose the thing I am most grateful for is the love and support we receive daily, it’s amazing.
My eldest son Lamar is planning to do a fitness day and is going to give 10% to Children with Cancer UK as we really do believe they are making lives better and with the launch of Precision Medicine, I’m sure a cure for childhood cancers will be forthcoming. Dylan meeting Linda Robson was another special moment, we’ll always remember as she was so welcoming and is one of Dylan’s favourite celebrities.”
(Photo: Linda Robson and Dylan at the Precision Launch in March 2017)
Third year diagnosis anniversary
“Dylan is currently on painkillers three times a day as he has painful aching legs, his feet have turned outwards which is caused by lax muscles and ligaments, and this is another side effect of chemotherapy. Dylan has physiotherapy and has been given strengthening exercise and will start using their gym (under the physiotherapist) to help.
Getting Dylan to do the exercises can get difficult as he’s often tired already when he comes home from school but he now has to come home in the car as he can’t manage the walk home without being in pain, this was another thing that we took for granted before Dylan’s diagnosis.
Dylan also sees a pain specialist; this is to help him get the right medication in the right dose to help him. Dylan’s end of chemotherapy treatment should be in March, which is something we are all looking forward to, although he will have to continue with all the other pain medication and physio to combat all the side effects that the chemotherapy has destroyed within his body. Last month was the three year anniversary of Dylan’s diagnosis. It’s changed our family and son completely; it feels like we’ve had a tornado storm through and it’s tried to wreak havoc on us.
Yes, it’s caused heartache and destruction and sadly left behind lasting effects, but I also feel we are all stronger and we cherish what we have with each other even more so. We’ve met many children along Dylan’s journey and sadly some have gained their angel wings but they all have so much courage and inner strength that their parents and families must be super proud, just as we are with Dylan.”
“We all had a lovely weekend away in November 2017 to Disneyland Paris where we had a great family time together; it was also the first time the children stayed in a proper hotel which they loved. They even got a special meeting with Winnie the Pooh and were made to feel extra special but on our return the winter weather kicked in and we all had to have the flu jab, we had to have it because of Dylan’s low immunity.
Dylan got a high temperature just before Christmas so was admitted into our local hospital and put on intravenous antibiotics; it was a very awkward stay as he had to move beds three times over 48 hours due to this hospital and all the others within South London being full for cancer patients.
When a child like Dylan with cancer is admitted into hospital they have to be isolated as they are prone to infections, which in Dylan’s case he already had, so it’s important for them not to catch anything else as it’s harder to fight without neutrophils. A person without sufficient neutrophils is neutropenic which means no immunity to fight infections.
Dylan was also put on a course of oral antibiotics and was so happy to be sent home. Wwe all had a lovely Christmas but it brought it home to us how easily Dylan could have spent Christmas in isolation over Christmas like many children do. Dylan is now on cycle 11 and thankfully has only one more cycle of treatment to go through. He’s off school again due to being neutropenic with a cough and cold, sadly his hair fell out again last week so he was upset about that.
I always thought that hair loss of someone who was being treated for cancer only fell out the once but was completely shocked to see it falling out the second time and thought something was wrong. Luckily another ‘cancer mummy’ explained that while under treatment hair loss can happen throughout treatment, which we’ve found has happened with Dylan, especially when he’s neutropenic.”
January 2020 update
I sadly and mistakenly thought that when Dylan came off treatment and rang the end of treatment bell, that our lives would settle back into a similar style as before. Yes, I foresaw a few obstacles along the way, but nothing compared to reality.
After coming off treatment I noticed that Dylan didn’t seem happy. He was having really bad mood swings – one minute he’d be fine and then the next he would be angry, shouting, name calling, hitting out, all over trivial things, such as not liking what we were having for dinner or someone walking in front of him while watching TV.
This kind of behaviour got worse and more frequent and we felt we were constantly having to play referee between him and his brothers and we were walking on eggshells just to keep him calm.
Dylan became obsessed with food and shopping. He was fixated on what meals we were having and become angry if he didn’t want it. It was the same with shopping, especially on-line. He expected to get everything he wanted and if we said no he’d throw a tantrum.
There were other difficulties we were faced with such as Dylan becoming scared to go upstairs to the toilet alone and going to bed on his own. We had to get a baby monitor and put it beside his bed so he knew I could see him and he would repeatedly ask me questions to make sure I was watching over him.
I knew from all this behaviour that Dylan was suffering from anxiety and he was depressed.
We spoke to Dylan’s consultants and he has been referred to a clinical psychologist. I’m very happy that he’s now going to get the appropriate help he needs.
These children go through so much, the pain, hair loss, mouth sores, different disabilities and whatever that may bring, missing family, friends, school – they even face their own mortality – things an adult would find challenging yet we (or more to the point myself) expected things to get back to some sort of normality after treatment, but I now know that was wishful thinking.
I think a lot of people believe everything is ok after treatment because they don’t have cancer anymore, but this is so far from the truth for many.
As I end this update, I’m hopeful that although it’s not going to be easy, we have at least started to make some sort of progress.
Again I would like to thank the team at Children with Cancer UK as they’ve kept in touch and have helped our family even after treatment which we really do appreciate. It makes us feel that we haven’t been forgotten and they’re still beside us on this continuing journey.
How you can help
If you’ve been touched by Dylan’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.
This helps to support children with cancer so they can be with their families for longer.
Have you or a family member been affected by childhood cancer?
Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.
If you have a story that you would like to tell,.