How do you cope when a child is diagnosed with cancer?

I was trawling through blogland last week and I found an invitation to help promote CLICSargent, the charity that supports families dealing with childhood cancer. You can read the piece that prompted me to get involved by clicking here.

It didn’t take much to persuade me because I have personal experience of CLICSargent and the work that they do.

My son was diagnosed with Acute Lymphoblastic Leukaemia, the most common form of childhood cancer, on the 17th of July 2008. You don’t forget the date your child is diagnosed. It goes into your consciousness, along with birthdays and other anniversaries. It is the start of a different phase of your life.

Everyone thinks that diagnosis is a terrible shock, something that you must have to spend ages coming to terms with. It wasn’t like that for me. I felt that diagnosis was a relief. I knew there was something amiss with Son Number One, I’d taken him to the doctors with a few different complaints and I was starting to feel that I needed some answers. In hindsight, he must have been feeling ropey for quite a while, poor child.

Falling asleep in his dinner was one of many signs that Son Number One was not on top form

The only time that I felt emotionally out of control was the first time I walked the length of the children’s oncology (cancer) ward. There were some very sick looking children there, several of them were hooked up to drips, most had lost their hair. It’s an image I can still conjure up. I realised that my son would soon look the same. He was going to be a cancer patient.

I remember speaking to my Mum just after that. “He’s going to loose his hair” I wailed down the phone. “That’s ok”, she said, “It’ll grow back”. She was probably more devastated than me at the time but her common sense shook me out of my emotional state.

About three months after diagnosis when the first intensification drugs started to kick in and make him really sick

We spent about a week in hospital after the initial diagnosis. The Husband and I shared a single bed for a few nights until I was able to get a bed in Crawford House, a ‘home from home’ run by The Sick Children’s Trust on the RVI site.

Despite what it means to us, I still love the old RVI building

We were very lucky that there were Grandparents on hand to hold the fort at home. The Middle Miss was 11 months old and we probably hadn’t spent a night away from her at that point. Not only did our parents look after her, they cooked for us (parents aren’t provided with food on the children’s wards in the Newcastle RVI) and visited us. That sounds like anything a normal family would do but it involved a round trip of 70 miles and negotiating the traffic of an unfamiliar city.

Children’s cancer is rare, so the units that treat it are often far from the home of the patient. That was one of the shocks to me; I had assumed his treatment would be in our local hospital. I am still thankful that I wasn’t living in West Cumbria. Children living there also travel to Newcastle for treatment. Their trip is 95 miles in one direction.

CLIC Sargent know all this. That is why they aim to visit all newly diagnosed families as soon as possible. We were visited by one of their staff during our first stay in hospital. She immediately offered us a grant of £200 to help towards travelling expenses. We spent that very quickly. Our fees for the hospital car park were about £35 for that first week! We were allocated to a CLIC Sargent social worker who helped us to apply for any benefits we were entitled to. She also listened to our questions and worries about how we would cope with Son Number One’s treatment.

This is what five weeks on high dose steroids will do to you

Finally, we were told that CLIC Sargent provide holidays for families in our situation. At the time we just thought “That’s nice, there are some perks to your child having cancer!” Later we realised that you can’t really risk booking any other kind of holiday because your child could be admitted to hospital at the drop of a hat. I suspect most travel insurance is unlikely to cover that kind of eventuality. For some families, the holidays that CLIC Sargent provide are about more than this practical solution to an expensive problem. For some families, these holidays are a way of creating lasting, precious memories.

Happy days on the beach, not long after diagnosis, courtesy of CLIC Sargent

So, how have we coped as a family? There’s no doubt that having extended family nearby has been a complete blessing. We have been able to drop everything and take Son Number One to Newcastle whenever we have needed to. Occasionally Grandma has been the one resident in hospital with him. Even Grandma who lives further away in Cumbria tried to come and visit each time Son Number One was admitted. Grandparents can be so invaluable. One of the other mothers we met on the ward told us that her parents had temporarily moved closer to them in order to help out.

The Husband’s employer was extremely understanding. He was given five weeks compassionate leave at the time of initial diagnosis, provided with the means to work from home and had the terms of his ‘flexi-time’ made even more flexible. They even treated Son Number One’s numerous clinic appointments as if they were the Husbands, allowing him time off for them, no questions asked.

The single rooms in the old RVI ward. The TV’s were at a rubbish angle!

I have often felt very guilty at the amount of time the Husband has had to take off work. I really wanted to be the one in hospital with Son Number One. Experience showed us that this was something I frequently did not cope with. This upset me a great deal. I felt that as a stay-at-home mum I was really letting the side down by not being the one doing the hospital visits. However, when I did go I regularly developed a massive migraine and often came home sicker than the boy. Well, vomiting more anyway. I was tempted, occasionally, to snaffle a bit of his anti-sickness medication.

The Middle Miss has grown up knowing nothing other than having a big brother who got a lot of our time and attention. She is fairly adaptable and seems to cope when she has to stay behind while Son Number One gets whisked off to hospital. In the early days when he was very sick, she tried to cheer him up in her babyish way (she was only just a year old) by bringing him toys. Whenever he was tucked up on the sofa she would want to get up with him. Unluckily for her, he was having none of it! I sometimes wonder how their relationship has been affected by his illness. He was really sick just at the time when they should have been forming a strong bond by playing together. I suppose time will tell.

Our friends promised to help us if they could, and when we’ve needed to lean on them they haven’t let us down. One of my lovely friends happened to visit us one day when I was in the throes of one of my migraine attacks. Despite having two children of her own at home, she stayed with us and made sure we were ok. Another friend, who lived closer to Newcastle than us, brought Son Number One porridge sachets one cold winter night when the city centre supermarkets were shut and it was all he wanted to eat. Local friends and neighbours have babysat for the Middle Miss without hesitation. One dear friend used to drop by unexpectedly with delicious, home made casseroles for our freezer. I feel like an Oscar recipient now (sniffles) “I’d like to thank anyone I’ve missed out – I love you all”.

When things were at their most difficult, I asked for some help from Rainbow Trust. Our CLICSargent social worker referred us and it was one of the best things we did. Once a week one of Rainbow Trust’s support workers would come to visit. She was a big hit with both the children from the start. She took Middle Miss out to local soft play areas so that I could completely focus on Son Number One’s needs. When he was feeling better she took them both and gave me a few hours alone. There was one occasion when she came and the Husband was at home too. I felt quite guilty that we had taken her time up  unnecessarily but she said we should just enjoy having someone else around caring for the children and relax. If you ever get the chance to support Rainbow Trust, please do. They look after families with seriously sick children, whatever the illness.

On September 15th last year we celebrated Son Number One taking his last dose chemotherapy. That’s another date etched into my memory. We celebrated by taking him and his friends for a ‘Happy Meal’. Who was I to argue with such simple request when he’s put up with so much.

In a couple of weeks Son Number One should have his portacath (the device that sits under his skin and allows powerful drugs to be delivered, literally, to the heart of his circulatory system) accessed for the last time. This is a pretty uncomfortable procedure that he has learnt to tolerate over the last three and a half years. When he wakes up it will have been removed and another stage in recovery will begin. He has already changed so much since the chemo stopped. He has slimmed down, increased his energy levels and developed a massive appetite.

He will always have a few scars from his treatment, mainly physical I think. Hopefully, the pain and discomfort will soon be a fading memory. We will always wonder about the possibility of a relapse. It is very unlikely, but it could happen. Some families don’t get to the recovery stage. I’ve known two mothers who’ve lost their children to cancer. I can’t imagine how they coped.

If you would like to support CLIC Sargent by hosting a Yummy Mummy event, please go to the website here. If you use social media like Facebook and Twitter (er, I have no idea how twitter works so forgive me if I’m talking rubbish) you could support the cause by simply sharing a link to this blog post. The more people who know about CLIC Sargent, the better. Thanks for reading this far.

Advertisements

6 thoughts on “How do you cope when a child is diagnosed with cancer?

  1. Thank you so much for sharing and giving our posts a sense of reality by way of the support CLIC Sargent.
    I spent only a week at Sheffield Childrens Hospital and was in awe of how strong the parents to who this is part of the regular routine were able to show their little ones.
    I am so glad your little one is on the mend. x

  2. Thank you for sharing. It’s heartbreaking, but in a way it’s comforting to hear the ins and outs of it all so that it’s not such an unknown scary thing.
    Now I understand so much more what CLIC do, I’m really pleased I’ve been involved in Nickie’s blogging prompts.

    With your daughter and son, it’s never too late to help their relationship. When things have settled down and you have a little more time, maybe do some special things with them. Ask them how they feel about each other and if they say that they don’t feel loved, explain why it might be.

    Sending you a lifetime of health for you and your family xxx

    • Thanks for commenting. You know, on the subject of information, I always wanted more from the consultant involved in my son’s care. For me knowledge is not scary, it’s preparation, power if you like. I think he must have dealt with a lot of parents who freaked out with too much information.
      My eldest two are just a funny pair. Son number one is a one-off character to say the least. He was actually very caring with her yesterday when she had a sickness bug. I think he actually had some empathy with that! He knows what it is to need a bowl quickly.

  3. This story has touched my heart so much , thankgod your little boy is doing well & thankgod for wonderful family , friends & charitys that help so much. Lots of love to you all x

  4. It’s brilliant to see the pictures of your boy looking so happy and healthy – thankyou so much for sharing such a personal journey and helping us understand why events like Yummy Mummy Week are so important.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s