Surviving a child cancer diagnosis – the first two months
On Friday 29th December we marked 60 days of cancer. More specifically he was diagnosed with Acute lymphoblastic leukaemia (ALL) which is a type of blood cancer that starts from young white blood cells called lymphocytes in the bone marrow.
I think the list applies to most cancer diagnosis and I thought i’d pull it together as I wish i’d had something similar from day one. If it helps just one other person, then it was worth writing.
The first few weeks are challenging:
- You will be overwhelmed with the diagnosis.
- There will be so many different people to get to know on your cancer team, it is easy to lose track of who everyone is and their role.
- You will have people you need to tell, keep updated and share your news with.
- You may have other children who’s needs need to be met whether that is childcare, support.
- You will need to become somewhat of an expert on your child’s diagnosis and understand protocols, regimens and endless drugs.
What you need to know:
- It isn’t your fault
- There isn’t anything you could have done
- You will be in safe hands
- It is ok to ask for help
- Cry, scream, stamp your feet, punch a pillow and let your anger out
- The first few weeks are very much like a grieving process, you will follow the curve where you will go through a roller coaster of emotion
- Every journey is different – yours will be unique too
The internet is a gift in so many ways, we have information at our finger tips. We can find support, hey even this blog lives on the web. However it can also be a scary place especially when you get a cancer diagnosis. You can end up in a variety of cancer black holes.
We’ve all heard of fake news. Well there is a lot of misinformation online about cancer. If you want to research your child’s diagnosis speak with your consultant they will be able to recommend legitimate sources, papers you can read and sources you can rely on.
There are also a variety of websites we’ve found super helpful:
CLIC Sargent: fights tirelessly to stop cancer destroying young lives. From the day we met Sarah our social worker we’ve been in safe hands. She’s worked to advocate and support us navigating the diagnosis and the bumps in the road.
Children with Cancer UK: Our mission is to improve survival rates and the quality of survival in young cancer patients and to find ways to prevent cancer in the future.
Macmillan Cancer Support: From the moment you’re diagnosed, through your treatment and beyond, Macmillan Cancer are a source of support, giving you the energy and inspiration to help you feel more like yourself.
Bloodwise: UK’s leading blood cancer research charity. For us this website is full of really useful information about our diagnosis and the treatment path we are on.
Notebook and Pen
The first piece of advice I took was to get myself a notebook and a pen. In the early days I used it to keep track of the names of people talking to us.
I jotted down questions we had including questions from friends and family. I also noted things like how Bilbo was feeling and anything of interest so I could start to see patterns.
The paper is also helpful for writing lists for friends, family etc. whether it is stuff you need, or things you need them to do.
We got given a few with various info in from CLIC Sargent etc. Rich keeps a folder for all of our insurance paperwork. I keep one for all the latest information on Bilbo’s current treatment plan. And we keep one for paperwork we need to complete (there is endless paperwork)
Cleaning and Clean Up Kit
In the hospital it was relatively easy to clean up. But knowing that cancer can at times be a messy business I realised that I needed to be able to have the right stuff at home. You also need to be prepared to keep you home and your child germ free Immediately I bought:
- a couple of extra waterproof mattress covers
- pillow protectors
- disposable bed pads
- disposable gloves (you’ll need these for some of the chemo)
- industrial size hand sanitizer
- industrial size soap for all the bathrooms
I have all this stuff in a box under the bed so it is easily accessible. We also now buy antibacterial spray in bulk, cleaning wipes and milton sterilising tablets.
We have also been clear visitors need to wash and antibacterial their hands as well as remove their shoes when visiting.
Who and what?
Decide who and how you are going to communicate. This is a really tough decision to make. Who NEEDS to know what? You will have networks of people who will need to know different information.
We have two whatsapp groups one for immediate family – this is for detailed information about Bilbo’s condition, ins and outs about his hospital appointments. One for our extended friends and family, this is for more general updates about Bilbo and us as a family.
You will need to decide how to communicate with your own work. My advice here be as honest and open as your feel comfortable with. Cancer can be incredibly private for some families.
However you are going to need the support of your work place. Especially as the diagnosis and your journey will be unique to your family. You won’t know what roadbumps you will hit and therefore building trust early on is important. **Note still working on this as it is still early days for us**
You will need to talk to your child’s school/nursery setting. The school be part of the extended team helping you try and have some normality over time. When the time is right the school will also need to be prepared for your child’s return, leaving a child at school is challenging leaving a child with additional health needs is a whole new level of worry and stress.
Bilbo’s school have been nothing short of fabulous.
If your child has siblings you will also need to communicate with their school/nursery setting too. This helps with them understanding what your family is going through, cancer affects everyone.
For example H’s nursery have been understanding about our need to maybe drop off early or pick up later. They also keep us updated regularly with different sickness outbreaks for example chicken pox or hand, foot and mouth. And most importantly they understand and appreciate he may need extra cuddles.
You will be left emotionally, physically and mentally exhausted. It sounds cliched but you need a self care plan in place.
This is going to vary from person to person, family to family. For us a large part of self care is having clear roles and responsibilities. But it is also about making sure you know how you’re going to eat, sleep and de-stress.
Your normal routine will take a beating. If you’re a gym bunny first thing in the morning and you’re at the hospital a couple of times a week before 8am that isn’t going to work. You will need to find your “new normal”.
Roles and Responsibilities
I’m the control freak in our house and so it was obvious I would take the “Project Manager” role. I might moan about doing it all but I wouldn’t have it any other way and Rich knows that.
Cancer diagnosis has reverted us back to similar roles to when we had a newborn. I breastfed both my boys so during that time, I fed them and managed getting them into a routine. Rich took care of us.
What is really important is your define your roles early on. And this may include the roles of your support network too.
Why is this important? Cancer is bloody stressful. And as a family you are constantly at peak stress levels. What you don’t need to add into the mix is who’s taking the rubbish out, why hasn’t the dishwasher been on, what is for dinner and who’s cooking it?
Today for example we were back on the general anesthetic list in Oxford. On these days we leave at 6am but today we also had Harrison in tow. Bags are packed the night before with all the essentials. We both get up before the boys and make tea/coffee for the road, Rich gets the bags in the car and warms it up. I wake each of the boys put them in onsies and carry them out to Rich. Last minute check we have everything we need and off we go.
We work as a team, it is the only way. Cancer is going to test your relationship to the limit. We’re not perfect by any stretch, but my god i’m glad i’m doing this with Rich – he’s our rock.
Look after yourself
Making sure you eat is very important. I touched on this in a previous blog Ways You Can Support a Family Fighting Cancer.
But the quote “You can’t pour from an empty cup. Take care of yourself first” is spot on. If you let yourself get run down you’re going to be no use to anyone. Eat well, drink water (I feel terrible when i’m dehydrated) and get enough sleep.
Find your de-stresser – for me this blog is cathartic and helpful. I find writing it all down and pouring out my feelings is helping my own mental health. It is also serving the purpose of updating everyone. And when I look back I’m still in awe of what Bilbo has been through and how he’s dealt with it.
Find your niche and try to make time for it above all else (the washing can wait!)
Wall of Love
Very early on we realised that to fight this we need to throw as much love, support and positivity at Cancer as we could. The Wall of Love was born! We’ve over taken a wall and filled it with the cards and messages from our global community.
You don’t have to have a wall, but a visual representation of the support is helpful for us. Especially as Bilbo is so young and can’t read all the social media posts, texts and well wishes online.
A really good bag for EVERY hospital visit
It needs to be BIG and able to carry EVERYTHING you might possibly need for a day in the hospital. We were lucky enough to be given a bag from CLIC Sargent. This bag has so much space and loads of pockets.
And make sure your bag has these essentials:
Chargers: we have a couple of different devices that need charging. iPhone, tablet and iPad. We have a plug that can have three different leads charging at once. We also invested in extra long iphone chargers. Plugs are often not very close to where you might need or want to charge your device.
Diary: i’m pretty digital but sometimes I need to write things down. I find the diary I have handy as I can write lists in it. It has a bit where I can pop receipts, an emergency tenner for a coffee/lunch and a pen holder.
Medicine bag: Rich treated me to this for Christmas and it now houses all the medical bits we need for Bilbo. Right now it has anti-sickness medicine, spare caps for his wiggle, a thermometer, a spare dressing, and a spare bung for the wiggle. I add weekend antibiotics when I need it too.
Devices: we always pack Bilbo’s Kindle fire, it has been a life saver. He’s started to enjoy playing some of the educational apps and we don’t have to worry about him getting into things he shouldn’t. It is also super bloody hard to get YouTube on it so that means he’s not rotting his brain on that all day when he’s in hospital. The added bonus is that the tablet works without wifi so also perfect for the car journey to and from Oxford.
Other essentials we carry:
- Lip Balm – hospitals can be dry
- Refillable Water Bottles
- An emergency activity book for Bilbo
- Flush-able wipes
- Antibacterial hand sanitiser
- Hand moisturiser
- Travel mugs – our hospital has a strict all hot drinks need a lid policy so we use them in the hospital as well as on the journey.
We learnt the hard way that you should carry sick bowls everywhere. Bilbo wasn’t sick in the first few weeks. But as we moved into consolidation he started to be sick A LOT!
The cardboard ones from the hospital are perfect just ask for a few and then put them in every car and take one with you.
I would also recommend a small bag with other essentials: change of clothes, wipes and nappy bags. We don’t leave the house now without this bag – we learned this the hard way.
An overnight bag
Since our first stay in hospital we have an overnight bag packed at all times. In the bag we have the following:
- PJ’s for Bilbo and I
- x2 changes of clothes
- for Bilbo I pack extra underwear and vests. It can get hot in hospital so he’s sometimes just wanted to wear a vest. We’ve also needed spare underwear on more than one occasion.
- a couple of carrier bags – these can be used for multiple purposes.
- nappy bags – trust me they will come in handy.
- nappy cream – chemo has some horrible and uncomfortable side effects, we used sudocream until I mentioned it to the doctor and they gave us manuka honey to use instead.
- waterproof light shoes – I pack my rubber birkenstocks and for Bilbo he has his crocs. You can shower in them and they wash/wipe easily. Again trust me on this one!
- Pillowcase – we have a dinosaur one which makes the hospital feel a little less sterile and a little more familiar.
- Toiletry bags – I pack one for me and one for Bilbo. Essential items to include for you:
- Dry Shampoo
- Tooth Brush
- Shampoo/Conditioner/Shower Gel
- Hairbrush and hair bands
- Microfibre towels, they dry quickly and are easy to wash
- For Bilbo I include a miniature baby shower gel, it is gentle and can be used for multiple purposes. When Bilbo was in hospital for the first few days he didn’t want to shower and I could use it for a bed bath.
Learning to Parent a Child with Cancer
This is by far the hardest bit. The diagnosis is going to rock you but then you have to support someone else. You have to put the brave face on, the fake smile – it is hard work and exhausting.
Everyone will tell you steroids are the worst – they are! They change your child physically. Their behaviour will alter, food becomes life. Your food bill will increase. They will have all the cravings, they will want to eat random food you never knew they liked, you will buy food because they’re obsessed with it and then they suddenly won’t want it anymore. It is intense BUT it will eventually be over! Remember this at the hardest moment…probably when you’re child is nil by mouth waiting for your turn on the list.
You will have to think of inventive ways to get your child to not be scared of the third needle that week, the canular, the sleepy medicine, ALL the medicine. You will need to have patience when they are starving all the time and then understanding when they don’t want to eat anything for days.
Your role is not just mother or father, you are now teacher, chief entertainment officer, councelor, their comforter and their punching bag.
And you are going to feel like your heart has been ripped out and shattered into a thousand pieces every time you have to hold them, wipe their tears and relay their fears.
Some other things to consider:
- Buy a lot of antibacterial gel. Keep it in your car, your handbag, as you enter your house, in your bathroom. At work – when you return a lot of people will want to hug you or if you’re a man shake your hand. You don’t want other people’s germs anywhere near you or your child.
- Be as organised as possible, cancer is unpredictable so having your bag packed, Christmas presents wrapped early and having things you need organised and easily accessible will help a lot.
- If you’re relying on friends and family to help with siblings get them familiar with your routine. H appreciates a routine when everything else is up in the air and strange.
- Finally be kind to yourself. This is going to be hard work and you’re going to run on empty A LOT! So give yourself a break you’re not going to be able to do everything, be everywhere, write every thank you message personally. People will understand!
- Join a support group. CLIC Sargent will be able to recommend local groups. There are also ALL Leukaemia groups on Facebook and through cancer websites.
If you’re parent in our club please add your own tips in the comments.
If you’re a parent only just getting to grips with a diagnosis. I’m sending you a virtual hug. I won’t lie this journey won’t be easy but you’ve got this!