Happy Mother’s Day ! I feel privileged to have a guest on my blog on this special day. I met Jo, Lee and Harry on the children’s cancer ward in 2016. Kirsty, my older daughter and Harry were both diagnosed with leukaemia within weeks of each other. They were both teenagers then. Melissa, my younger daughter and Sophie, Harry’s sister met during events organised by Clic Sargent, Cancer Charity, to support siblings of those being treated for cancer. Although our stories parrallel each others, our individual experiences were different.
Please sit back with the beverage of your choice and read about this inspirational family on Mother’s Day.
1.Tell us a bit about yourself and the family,
We are a family of four – Lee, myself, Harry (now 17 year old son) and Harry’s sister Sophie (now 14). I am a teacher of modern foreign languages and work in a high school in Doncaster and Lee is a heating engineer. Harry enjoys IT and is currently completing his studies at a college in Doncaster and is hoping to embark on an apprenticeship in IT in the near future. Sophie is a bubbly, outgoing girl and enjoys time with her friends (so has found lockdown difficult) she is in Year 10 and enjoys school.
2. Can you describe a family time that you have enjoyed most?
I think a family trip to Paris is perhaps the one we refer to with the fondest memories. We packed so much sightseeing into the week we were there that we needed a break on our return home!! I had carefully planned a busy itinerary for us as I had been to Paris several times as a student and as a teacher taking groups of schoolchildren, so I knew what I wanted everyone to see! It became a something of a standing joke whilst we were there – my lovely family referred to it as ‘Jo’s Bootcamp’! We were blessed with glorious sunny days and stayed in a lovely boutique hotel just off the Champs Elysées so we had a great central location.
3. How did you cope as a family when Harry got diagnosed with leukaemia?
Looking back, the time of diagnosis is all a bit of a blur. Obviously right at the very beginning the reaction was horror/disbelief and a gut-wrenching inability to comprehend the news which had been delivered – Lee, (who normally takes a back seat in the running of our household!!) was the steadying hand and seemed to handle things with calmness and reassurance whilst I struggled to speak to friends and family without crying. I always held it together in front of Harry though – we both did.
We both stayed with Harry in hospital for the first couple of days/nights and then Lee returned home to be with Sophie to try to keep her world as normal as possible. Grandparents also stepped in to try to keep things at home normal, whilst we spent so much time at the hospital. For the following couple of weeks we tag-teamed at the hospital during the day but I stayed most evenings with Harry. What made it much more difficult for us, was the distance to the hospital (a 74 mile round trip) It was such a turbulent time and I look back now and wonder how we came through it….
4. Harry always had a lovely smile everytime we saw him. What is Harry’s advice to other teenagers going through a similar journey?
It took Harry a considerable time to ponder this question and answer it. He struggled to come up with advice for others but he said that the most important factor for him, was maintaining contact with his friends.
This was something which caused me lots of upset at the time, because obviously his world had been turned upside-down and was practically unrecognisable from his former life – gone were the weekends of playing football for his local team, days out as an independent, adventure loving teenager, going to school, socialising with friends in the evening/at the weekend…..everything had changed. We had a very poorly boy and a house full of medicines. Our weeks were punctuated with frequent trips to SCH and our days/nights were totally unpredictable – monitoring his wellbeing 24/7 and being ready to jump in the car at any given time of day/night to get him to hospital should his temperature spike.
Harry had an Xbox at the time and would hook up with his friends online at weekends and evenings, and to be honest it was a godsend! I remember saying to him one day how worried I was that he had stopped seeing his friends due to his illness. He said ‘Mum, they’re still my friends, they’ll never stop being my friends – I just don’t see them every day, but I do speak to them every day’
He also said, in answer to this question, that he just tried to focus on the end point. 3.5 years is a long time in anyone’s life but at his age it was equivalent to a quarter of his life!
5. What advice would you give other families going through a similar journey to yours?
I’ve been asked this question lots of times by newly diagnosed families and my answers are always the same:
· Take one day at a time. That’s all you can do. With this type of illness and treatment regime it’s impossible to make ‘plans’ . We quickly learnt that it was futile to try to plan too far ahead, so things like holidays, social events, meeting up with family and friends had to be very fluid.
· Accept help from others when its offered – in whatever form. People are keen to do whatever they can to support you. You will need it.
· Try to stay positive (really hard at times)
· Try to look after yourself and each other too. Obviously your sick child is always going to be your number one priority, but try to make time for yourself too. A walk, a bath, a phonecall with a friend – small measures but ones which can help lift your mood and clear your mind
· Don’t be afraid to ask questions of your medical team
· Don’t google!! (I need to follow my own advice!) instead use trusted sources of online information, e.g Cancer research/Macmillan/Bloodwise/Leukaemia Care etc
6. Were there any support groups, books and people that helped you all cope?
1. The medical team at Sheffield Children’s Hospital, won’t ever be able to thank them enough
2. CLIC Sargent were absolutely amazing (I often say I don’t think I would’ve coped without the support from our CLIC social worker, Louise – and I feel so fortunate that our family had the privilege of her expertise)
3. Friends, family, colleagues and neighbours
4. PACT ( Parents Association of Children with Tumours and Leukaemia)– also offered tremendous practical support as we spent so much time at the hospital over the 3.5 years of Harry’s treatment.
5. Families of fellow patients on treatment who became friends and have remained friends even post treatment – an invaluable source of support. I saw a meme which said ‘Childhood Cancer – a world where strangers become friends and friends become strangers’ the message is sad but there’s a shred of truth there.
6. Facebook support groups ‘Children with ALL’ and ALL T-cell Leukaemia Support (Paediatric) – in domains such as these the newly learned vocabulary you’ve acquired and the experiences you are going through are understood and shared by so many . These groups can be a fantastic source of information/advice/solidarity
7. How did it feel when the end of treatment approached?
Very scary. At the start of treatment you focus on this endpoint and in your mind you envisage the parties and the celebrations, but at that stage you have absolutely no idea what you are going to live through before you reach that point. The reality (for us) was very different. Harry did not have a smooth ride through treatment – nothing was straightforward about his journey and there were lots of issues to deal and unexpected side effects which meant that we spent so much time at the hospital for the entire 3.5 years. The 4 walls of the hospital become a ‘security blanket’ and all the medics who work with you for such a long period of time, become almost extended family.
As the end of treatment got closer, I could feel my anxiety increasing. A return to disturbed sleeping patterns and a lack of clarity of thought as the ‘relapse’ demon would often dominate my mind. Harry’s treatment had changed the way we lived our lives. Through necessity not choice, we had become reliant on the hospital, the treatment and the array of daily medicines – and I started to panic insanely that as soon as this was abruptly removed from our lives then the leukaemia would inevitably return.
It has been a very slow return to any kind of stability post end of treatment and at times I still feel like I am living on a knife edge (I don’t believe Harry feels this way, which is great!) – but, sadly, as a parent the psychological trauma that you have endured damages you – forever.
8. What was the best things about 2020?
Apart from Harry ‘ringing the bell’ to signify the end of treatment – which was obviously the best thing to happen to us in a number of years – I have to say that 2020 was tough and unremarkable.
9 How has the pandemic affected you and the family?
The pandemic has made me sad and a little angry and resentful, not for myself but for the ongoing lost opportunities for my children. I think the timing for us, as a family was particularly tough. Harry had, in effect, been living a life of self-isolation for the previous 3.5 years and we had great plans for 2020. But I am also optimistic about we have gained and learned. We have definitely become even closer as a family unit than we were before, and we’ve shared experiences with each other/family/friends that we never would have, had it not been for a pandemic! I mean who would ever have believed that you would celebrate your 50th birthday, virtually via ZOOM – drinking prosecco with friends and family for 6 hours!!!!
10. What are your plans for 2021?
No grand plans – just time with friends and family – hopefully in person!!
11. What is your advice to teachers who are working so hard to keep kids educated and staying safe?
Hard for me to answer this one as I am a teacher. I think teachers up and down the country have worked tirelessly to provide the best possible support to our children throughout the pandemic. On a personal level I am proud of what I have achieved in terms of professional development – I have had to adapt and up skill overnight and know that I could not have done any more to support the learning of my students. I feel as though I have done 10 years worth of CPD in 12 months!! 😊
12. How do you think cancer impacts on siblings in the family?
Whoa – this is huge! Its impossible to estimate the impact that a cancer diagnosis has on siblings. I feel as though I will be finding out for years to come. Sophie will often refer to events from her childhood in terms of ‘before Harry got ill’. This speaks volumes to me as it implies almost that, pre-diagnosis was a different life – she’s right.
Whilst you do whatever you possibly can to minimise the impact – there are times when you can’t be there for the sibling because you are elsewhere with your sick child.
Hope you have a great day Jo. Thank you for sharing your thoughts and experiences with us. Your advice on taking one day at a time, and how you and the family celebrate every special moment is so vital for all of us going through difficulties in our lives, especially in the current pandemic.
Reading this sentence ‘ …sadly, as a parent the psychological trauma that you have endured damages you – forever.’ this has put my feelings into words for me.