Crack up for Childhood Cancer

IMG_4160Over five years ago I received the news that my eldest child had leukaemia. It didn’t come as an enormous shock to me, he had clearly been unwell for a while. I didn’t feel hysterical, shocked or even tearful as you might expect. I felt relieved. Relieved that there was a reason why my son couldn’t climb the stairs, why he was falling more frequently, why his joints had been troubling him and why he looked so ill and grey. I was relieved that his diagnosis of Acute Lymphoblastic Leukaemia (ALL) meant that he could be treated with a highly refined and successful protocol. In many ways I think we have been lucky. He has been off any treatment for over two years now. The risk of relapse is very low indeed and he is a normal, healthy boy. You can read more about our experiences here.

Five years ago, things were very different. Although the treatment for his form of ALL is all delivered on an outpatient basis, he spent most of December in hospital because of how ill it made him. He was anaemic and required blood transfusions, he had infections and at times he was in a lot of pain. Whenever he was admitted to hospital, one of the things that got us through was laughter. Despite his young age (he was only three) he could ‘get’ certain jokes. We tried our best to find simple gags to keep him (and us) laughing. One of my best friends, whose brother had died of leukaemia ten years earlier (he was much older and had a lot more complications due to his other health issues) got her Mum to collect the jokes from Christmas crackers for us. It was a great idea and now I want to resurrect it.

Last week I got the news that a little boy we have known since his birth has a tumour that is likely to need some fairly aggressive chemotherapy in the New Year. It is fair to say that I was more shocked and horrified by this news than I was about my own son’s cancer. His parents have a lot to think about at the moment because his cancer is rarer and requires more specialised treatment. At times like this it is natural to want to help but really, there is only so much you can do. I will certainly be making some one-pot home cooked meals to give them because I know how much I appreciated such things when my boy was sick. I will keep my appointments to give blood because I know how important transfusions are in cancer treatment. But what I want to do most of all is find something to make this little boy smile when times are tough.

I had a brain wave on Wednesday. It was Christmas dinner day at my children’s school and all the children get a cracker. I quickly rustled up a cracker shaped container and enlisted the help of the Deputy Head to collect all the jokes. The staff and children did a brilliant job of donating their jokes – we collected well over 100. Of course, lots of them are the same joke repeated but it feels good to know that everyone played their part.

So, I want your help. Send me your cracker jokes, send me your ‘Doctor, Doctor’ jokes, send me any jokes that will make an eight year old laugh and I will pass them on. You can leave them in the comments here. If you are local I will collect the actual jokes from the crackers from you. If you are not local but want to send me the jokes from inside your crackers, mention it in your comment and I will let you know how to post them.

I really hope that you can help me out this Christmas because it is going to be a difficult New Year for my friends. Anything that can help them through this will be much appreciated.

P.S. I’d rather keep this off Facebook/Twitter etc. at the moment because I want it to be a surprise.

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Autumn in the Park

We took advantage of the clear skies today to enjoy a trip to the park. We used to come to this park a lot but for some reason I don’t think we’ve been since Babykins was born. Visiting today reminded me of how different things were when Son Number One was last here. He was still on his leukaemia treatment then. I felt that I had to keep my eye on him all the time because he was so apt to trip and stumble. Neither of us was particularly confident about his climbing, running or jumping. What a joy it is now to see him tackle the zip-wire with ease, to scale the heights of the climbing frames and to generally run around without a care in the world.

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Blackpool

We spent the second week of the school holidays in Blackpool. Look, there was sunshine!

These photos were taken on our very first afternoon in town. The Middle Miss soon spied the Big Wheel on the Central Pier and begged to be allowed a ride. I wasn’t that keen, but I climbed aboard with the rest of the family. I think Babykins was a little bit scared by the experience, he certainly held tight to his Dad (and his hat).

It does look like an awfully long way down….

It is quite some time since I have been to Blackpool. In fact I think it was probably around 1995. The Husband (merely The Boyfriend at that time) and I had a day out at the Pleasure Beach. Somewhere, we have one of those cheesy roller-coaster action photos to prove it. Truthfully, I was a bit nervous about a family holiday there. However, if you are not bothered by or can ignore the tackier side of the British Seaside, Blackpool certainly has something for everyone.

For example, if you are a lover of modern art, I give you this view of the Prom, walking north from the Central Pier. The North Pier can be seen in the distance, though we never made it that far. The large black bendy things are some sort of ‘installation’. I haven’t been able to find out much more than that. I will leave it to your imagination what the majority of the locals said about them when I enquired. Personally I quite liked them. They bend and move in the breeze. I’d be interested to see them on a very windy day. Our host said he had seen them with only about 8ft of clearance from the ground!

If the traditional, bucket and spade approach appeals to you then Blackpool can certainly supply the sea, the sand and the donkeys. You have to be prepared to retreat from the beach though because when the tide comes in, there is no sand at all.

The donkeys were a big hit, in fact the children went for a ride three times. They were very cute. The fleecy blankets under their saddle caught the children’s eye. For example, they would have described the nearest two in the picture as being disguised as a ladybird and a tiger respectively. They also took a very keen interest in their names, which were on their nosebands. Babykins thought the whole experience was fantastic. He grinned from ear to ear as they plodded down the beach and back.

My children are also hooked on the ‘money games’ as they like to call the arcades. They must have spent £5 each on 2p slot machines but it gave them a lot of pleasure. The Middle Miss even managed to extract a couple of dubious prizes. I know it’s a crazy way to loose money but hey-ho, it was a small price to pay for two or three hours of entertainment. We made them spend their own pocket money on that, so that they knew where the limit was. I was, however, also persuaded to part with the best part of £25 for some rides on the roundabouts, helter-skelter and dodgems. Surprisingly, the Middle Miss is quite a daredevil when it comes to these rides.

They all enjoyed this little ride and must have been round in at least four different vehicles each. The Middle Miss did a sterling job of looking after Babykins until he got enough confidence to ride alone.

This water shooting game was another family favourite.

Of course, Blackpool can offer all the important and traditional culinary experiences associated with the British seaside. Son Number One was astounded at the number of fish and chip shops. He would have been happy to test every establishment.

I really wanted to go into the convenience store in this picture to see if it had a vicious till. If you are familiar with the work of Ronnie Barker (think Open All Hours) you will understand what I mean. A bit further along this street was a shop where you could go and watch rock being made. It looked like a busy family business. I couldn’t help but laugh at the words inside the rock that was being produced while we were there: SKEGNESS.

There are all sorts of expensive attractions in the vicinity of the Central Pier in Blackpool: Madame Tussauds, The Tower and The Sea Life Centre. We only visited the latter. I thought Madame Tussauds would be lost of the children because they wouldn’t know who half the people were.

Compared to some other aquariums, the Blackpool Sea Life Centre is quite pleasant. All the usual creatures are on display, in pretty much the usual way but it somehow seemed smarter than the last one we visited (I won’t name names but it was in Yorkshire). Maybe it was just the fact that we were pretty much the first visitors of the day, so it wasn’t crowded, and, on the basis of past experience had decided to leave the pushchair behind.

If wildlife is your thing, Blackpool also has a pretty good zoo. The enclosures are reasonably animal friendly and there is certainly a wide selection of species. For me, the most impressive were the Gorillas. They live on an island so there is relatively little in the way of bars separating you and them. There is plenty of distance, of course, but they still catch the eye as they go about their business. The sight of the male silverback moving around is very impressive. Here are some of our other pictures.

You may be wondering why we ended up in Blackpool, considering I mentioned near the start that I wasn’t sure about it as a destination. The truth is that it was a deal too good to refuse. Because of Son Number One’s connection with the RVI and CLIC Sargent we were offered a holiday at Donna’s Dream House. The house was set up by the Curtis family in memory of their daughter, who died in her early 20’s of a rare form of melanoma. As holiday destinations go, it’s a one off! How many places have you stayed with that are decorated with old Blackpool illuminations? Can you spot us in this photo? We are camouflaged.

This is the play room. There are so many toys there is hardly room to play with them.

The back yard has it’s share of Blackpool paraphernalia.

These fish are a fitting decoration for outside the hot tub room. Oh yes, this place has a lovely hot tub. The children LOVED it. We enjoyed it but it was a far cry from the old ‘BC’ days when one of our neighbours had one. There was no chance of having a quiet glass of red wine this time.

Another big hit was the home cinema. There was an enormous screen, proper flip-down seats, surround sound and even free popcorn. What more could you want.

Thanks to the generosity of the people who support Donna’s Dream House, the holiday was free. Previously we have benefitted from static caravan holidays with CLIC Sargent. When Son Number One was on active treatment they were a great benefit. Children undergoing leukaemia treatment can develop serious infections at the drop of a hat and have to be hospitalised. This makes it impossible to consider booking a holiday, there is little chance you could get insurance. This year, almost a year since he finished his chemo, he was really quite well. I felt a bit of a fake really. I just told myself that it was treat for the children that we might struggle to afford otherwise. Both Son Number One and The Middle Miss have had to put up with a lot because of leukaemia. Thankfully, it’s an issue that is mostly in the past. I think this will be the last holiday of this type that we will have. Though I’ll miss the opportunity to go on holiday for free, (who wouldn’t) going out and putting down a deposit on a break will be another milestone in our family journey up and away from childhood cancer.

Surviving Another Milestone

This is the final week that I will be participating in the ‘Do Something Yummy’ Blog link up to raise awareness for CLIC Sargent, the charity that supports children and young people with cancer. If you want to know more about their “Yummy Mummy” week, please click here. If you want to read more blog posts on this theme, click here

Son number one had surgery this week. Three years and seven months since it was put in place and five months since his chemotherapy finished, he finally had his portacath removed. If you’ve never heard of or seen a portacath, they are quite hard to visualise. Essentially, they are a device that allows strong drugs to be administered, without a canula or a Hickman line being in place. I won’t go into how they work, in case you are squeamish. If you want to know, click here.

The whole thing is just under the skin. In Son number one’s case, just below his left collar bone as you can see above. Our consultant kindly let us have the X-ray image you can see below. It has served him well but I’m sure he’ll be glad it’s gone. It must have been uncomfortable if he ever took a knock to it. Getting rid of it is another milestone on the road to normality.

This week has been a reminder of what it is like to have sick child at home. The operation has left him feeling uncomfortable and sore. The dressings are pulling on his skin, making him sit and stand in a really strange and awkward looking position. His left arm is pretty much out of action. He spent the day after the op moving between a chair, the sofa and his bed, mostly watching TV of some sort. It was mighty tricky keeping Babykins from climbing up onto him.

When he was first sick, I had a period of feeling quite stressed. I don’t think I really understood my feelings at the time but I have re-visited them this week. I know now that having a sick child at home can make you feel very trapped. You can’t go anywhere or do anything. You feel torn between wanting to nurse the sick child and entertain the healthy one. Although you are  extremely grateful for all the help you get from family and friends, all you really want is your own version of normality to return; to be able to cope with looking after your family and running your home on your own.

By the end of this week, I was ready to run away and have some time alone. It’s amazing what an hour and a half of silent hooking can do for you. I think the psychedelic colour scheme of my little bird reflects my state of mind when I was making it. I am now back to making sensible, normal, yellow chicks.

I am thankful that this period of recovery is a minor blip. I’m sure that in another week he will be running around again, full of vim and vigour. Hopefully I will be too.

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.