Day 5: Learning to be a parent who’s child has cancer
Bedtime reading
Childhood Leukemia Treatment
As day 5 draws to an end I can barely believe it has only been 5 days, it already feels like an eternity. We’re starting to understand what childhood leukemia treatment looks like. And figure out our new normal.
Today has been a learning day, i’ve learnt how to remain patient when i’ve wanted to scream. I’ve learnt to bite my tongue and take a deep breath when i’ve wanted to shirk my responsibilities as a mother and take 5mins to myself. I’ve learnt more about the treatment path we are on, i’ve learnt from other parents that there will be light at the end of the dark tunnel. And most importantly i’ve learnt about how we’re going to have to look after Bilbo when we are at home, how and when to phone in and take him to hospital. And tomorrow I will share that learning with Rich so we can do this together.
How’s Bilbo?
He’s had an up and down day. After a very stressful evening, this morning was up and down. We’ve had more moments where he’s been agitated and stressed, the yucky medicine is taking its toll. Making choices about food is overwhelming him. He’s swinging between bossing us about and telling us what to do and wanting decisions made for him.
His partner in crime today…Uncle Gav, love his side look in the first pic.
Selfie time with Uncle Gav
Keeping up to date with current affairs, Uncle Gav read out the best bits.
We did walk to M&S which is the opposite side of the hospital, he didn’t complain and only had a very short carry from Uncle Gav, incredibly proud of his strength (and Bilbo 🙂 )
Highlight of the day Bilbo walking through the main reception and saying “this place looks like an airport” to which I replied “minus the aeroplanes” Uncle Gav decided to change that by making multiple paper aeroplanes that he’s enjoyed flying at my mums head.
He’s been taken off the fluid (hurrah – made walking SOOOO much easier) and they’ve stopped the antibiotics which have given him the upset tummy (DOUBLE HURRAH) he’s only needed to continue the steroids and he is currently having a blood transfusion (he’s asleep) which will finish around midnight.
Tomorrow he will have more platelets more of his meds to fight the cancer and general obs etc.
Giving Blood
Please give blood for Bilbo, this is his 3rd transfusion with his 4 platelet transfusion tomorrow morning.
SOOO many of our friends and family have told us they’ve booked to give blood. This is the best gift anyone can give right now and we are so incredibly grateful.
To put into context how important it is to give blood Bilbo has already had 3 units of blood. That is 3 people going to the blood bank and donating. These won’t be the last 3 he will need by any means.
He’s also going to be having his 4th transfusion of platelets in the morning. These are really important to Bilbo right now as they are what stop him from bruising under the skin and they stop him having nose bleeds. Platelet donation is incredibly valuable but not as easy to do. You can find out more here: Platelet Donation. It takes a bit longer but apparently you can get a sandwich which is an upgrade on the biscuit.
How are we?
Rich has stayed home with H today. He’s got some much needed TLC from his fav person in the world daddy. I’m feeling good and terrified in equal measure. Seeing Bilbo perk up and enjoy the craft room, a walk to the shops, playing and dancing with Nanny and Uncle Gav made me happy. We’ve got this we can make it work, we have the A TEAM behind us here at Oxford and through our friends and family. But terrified as i’ve listened to the instructions on how to care for Bilbo and how our journey will play out.
Multi-tasking extraordinaire – watching TV, playing with his new tablet and eating toast with chilled vibes.
What we know and what our lives look like for the foreseeable
- The hospital doesn’t want us to stay here long term, this makes perfect sense because as long as Bilbo isn’t fighting an infection or the treatment doesn’t go according to plan we can manage this at home, or locally in Milton Keynes. This was my first big learning, it is great news because Oxford is 50 miles from home and no one wants to stay in hospital longer than they need.
- However, we will need to come to Oxford as day patients for some of his treatment approx once a week at least. Next week this will include his hickman line, his lumbar puncture and the second dose of chemo.
- When Bilbo is at home we can try to live as normal life as possible. Yes he will be tired and yes there will be times where we need to avoid being out in very public areas like cinema’s (YEY!! For anyone who knows me well, you will understand my YEY! I hate cinemas with a passion so even more reason not to go) but on a serious note, Bilbo will have his immunity compromised so we need to keep him as germ free as possible. We’re all off for flu vaccinations and Harrison will have to have the chicken pox vaccine.
- When Bilbo is at home but gets a temperature we HAVE to go straight to hospital. Infections and being sick are a big deal to him now and so we have to keep a constant check on his temperature and act if it increases.
- Leukemia treatment for boys is 3 years but the first few months are the most intense.
- Bilbo will be able to go back to school once we’re past the first few months but there will be times when he won’t be able to do the normal things so we be playing the next 3 years by ear depending on the path cancer chooses for us.
- All the parents I spoke to today said the steroids are the worst part. They make the children hungry and cross. They can cause cravings and insatiable appetite along with anger, frustration and emotional outbursts.
- We need to be super organised from writing everything down to having day bags and overnight bags packed ready to go wherever we might need to be at the drop of a hat.
- The drugs have crappy side effects, today it was all about upset tummy’s but in the documents i’ve received today there is a whole section on constipation. Bilbo is on antisickness, some drugs will make him hungry some make him lose his appetite. Some drugs make him tired, getting blood helps with his energy levels. It is a balancing act.
- If you’re sick please don’t come and visit us. I’m struggling with this already because I’m rubbish at being direct but germs mean the difference between being able to fight this shit disease from the comfort of our home or in a hospital. So think before you visit and TAKE YOUR SHOES OFF! 🙂
Signing Off
So tonight as I sign off i’m optimistic. Bilbo has shown me just how fricking amazing he is, even in the suckiest of moments he’s showing strength beyond his years. We’re starting to understand the terminology, the treatment plan and who can help us with what. I’ve read so many words over the last few days that have helped me no end and at some point a will compile a list of the best things to say to a family with a cancer diagnosis.
I know that every day is going to be different we will have set backs and we will have break throughs but I know that our sleeves are rolled up and we’re ready to kick cancers ass! And whilst i’vve mentioned having the best team at the John Radcliffe in Oxford I truly mean it. They’ve made every step of this journey that little bit easier from our consultant, to the numerous nurses, the physio, the teachers, the play team and even the cleaner. The Kamran ward team are awesome!
When Irina was in hospital with preeclampsia for 10+ days, the hours and hours, day on day, seemed like an eternity, so I think I know what you mean. One day in crisis can be like four. Saying ‘as germ free a possible’ made me realise how terribly dangerous and frightening this journey is. Maybe Alex and Bilbo could talk via Skype and see each other and show toys from our front windows. Thanks again for the detailed update, Kim. P.S. I hate cinemas too! X
Wish I could give you a big hug. You got this!
What a trip! Fuck Cancer! Hugs, Love and most of all STRENGTH to ALL!!
I know you’re well into treatment at this point, but as someone who is a bit further down the road (our daughter was diagnosed April of last year), be aware that burnout is real and insidious. Our daughter is in her fourth month of maintenance (only a year an four months to go!) and while we are past the upheaval of the first six months and into a true new normal (in that there’s a monthly routine now, instead of things changing every few weeks or so), I have found it difficult to enjoy and truly appreciate the fact that we’re a good way down the road to recovery. I’m less busy now and have less to fear, since our daughter is responding well to treatment, but I find it hard to find much solace in that. I think it’s down to burnout. I didn’t do a very good job of taking care of myself during the initial six to eight month period and now I’m paying the price. So I would urge you and anyone reading this to try to figure out what you need for yourself (girl’s or boy’s night out from time to time, weekend getaway without the kids, some alone time every week, seeing a therapist–whatever) and doing that while you’re in the thick of it, instead of putting it off. You’ll be glad you did.
Thank you for taking the time to post and providing a view from the “other side” I think I’m realising this right now and it’s not to late to put some better guard rails in place for better self care. Glad to hear to your daughter is on the road to recovery.