Week 7, Cycle 3, Day 49. 10th April 2018
‘Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved’, Helen Keller.
I spend hours and hours every day online, I’m sure my family think I am addicted to social media and I suppose I am. I’m not filling in quizzes to discover which type of potatoe I’m most like though. I am normally reading posts in support groups for parents like us. I have read every blog and post written in the last 5 years about this protocol he is on. I have mentally prepared myself for the ‘worst case’ scenarios of side effects and so the build up to Cycle 3 inevitably had me drenched in angst. I knew it was likely he would have a rough time.
Cycle 1 & 2 were pretty smooth but during the second cycle we started to see some mild side effects from the chemo; painful legs, more tired and so on. Reluctantly, it was the first time we had to administer Morphine. If you’re like me the word ‘morphine’ conjurs images of really sick people, of dieing people. It also reminds me of a really harrowing film I watched in the 90s about a young girl who is left to look after her alcoholic father and younger brothers after her mother dies of a brain tumor. It’s a really sad story and that is the first thing to come to mind for me. I didn’t want to give my baby that drug. I spoke to the girls in clinic several times before I actually had the courage to give it to him. They reassured me that the dosage for someone of Jack’s size and for the purpose it was prescribed was really mild, it was purely to alleviate the pain he was feeling and should be used like calpol for the duration of his treatment. Kids on chemo cant take calpol or ibuprofen unless in special circumstances, this is because the calpol can mask an infection and the ‘brufen can make them neutropenic.
Knowing that he was likely to start feeling shit we really tried to make the most of his time the week before. He had a sleepover with his grandparents in Manchester, played crazy golf with Daddy and even joined in at his cousins party at a local trampoline park. He was just like a normal kid, I found myself staring at him and thinking ‘how can this even be real?’ he looks like all the other kids, he acts like them too but still I knew that it was only a matter of days before he would be knocked off his feet.
In the background of all this going on I continue to have people getting in touch to tell me about how ‘their friend’ has cured their cancer with alternative therapies. I am truly happy that these people have found a solution to their specific health issues and we have adopted some of the methods as a supplement to the medical protocol we have chosen to follow for Jack. As a parent you wonder if you’re doing right by your child in almost every decision you make that effects them. Imagine having to make a decision knowing that your child is going to end up hospitalized as a result of it. The parental guilt is off the scale for oncology parents and while I am open to hearing about other peoples stories and successes I would encourage those sharing them to be mindful of the inner turmoil the parent is going through. Ask them do they want to hear about your friend rather than shoving it in their face. Think about what YOU would do if it were YOUR child in the situation. Would you start with the unknown or be more inclined to trust the years of evidence based scientific research?
Still, I have questioned whether we have made the right decision for Jack. He started cycle 3 on Monday. All went to plan and we were in and out of day case within 2 hours. We had a normal afternoon and he had a decent nights sleep. When he woke up on the Tuesday morning he came in to my bed and said he felt off. He didn’t want to get up and have his cuppa with the rest of us and after I coaxed him out of bed it became apparent he was feeling nauseous. Within minutes of taking his anti-sickness meds he started to vomit. I knew we would be going back to the hospital just by looking at him. Standard procedure is to call the ward to ask for advice first. They said to see how he went and they could prescribe a different anti-sickness over the phone, within half an hour he had vomited another couple of times.
At the moment we’re having some decorating done at our house so we had packed ourselves and both kids to my Mum & Dad’s who are away at the moment. No sooner had we arrived there with all the paraphernalia required for a family of 4, we were in the car en route to Alder Hey. We had to pull in just before we entered the Wallasey tunnel for jack to be sick in to an old washing up bowl. Trying to stop him from getting upset and clear sick up at the side of a windswept and rainy tunnel approach whilst also keeping his little sister asleep was an interesting challenge.
As we got closer to the hospital I could tell he was starting to spike a temperature. I had my own Phillips thermometer to hand and it confirmed a 38.8 temp. In chemo terms, that’s an admission to hospital while they do blood cultures to check there’s nothing sinister inside his blood. When we found out about the relapse I packed myself and him an overnight bag. They have been in the boot of Lee’s car the whole time so that was one less thing to stress about. As we arrived on the ward they put him in a bed and ordered some IV antisickness, antibiotics and paracetamol (yes, I did say he wasn’t allowed it but they only give in special and controlled circumstances when infection has been out ruled). He settled on the bed and then instantly got a cob on with his sister who was happily playing/screeching at the side of his bed. It was agreed that she was best out of the way so Lee set off to Manchester to drop her off.
Over the course of the rest of the day things went continuously down hill. His temp went from 38.8….. to…. 40.1 …..to ….41.4 Degrees Celsius (REALLY BLOODY HOT!!). He continued to be sick as the anti-sickness drugs wore off and started developing a rash all over his face as well as some swelling around the eyes. They decided to give him an extra anti-sickness drug which caused drowsiness so from 1pm until 5ish we watched him in a very deep sleep burning up like we’d never witnessed. They decided he needed to be admitted to the inpatient ward and we were moved to our own room.
The facilities at Alder Hey are really world class, we got a room overlooking the park and helipad, en suite and a little couch that turns in to a bed (the most uncomfortable bed in the frigging world mind you). At this point his temp had shot up to 41.4 and he was delirious. Neither of us have ever seen him that unwell before, even in 12 months of treatment last time round he was never that poorly. The feeling of helpless consumes you and you wish with every bone in your body that it was you lay there hooked up to various drips and tripping your head off. At one point he started talking about celery, then Manchester United, then Maccies and Monopoly; all in the same sentence. We laughed but it was a nervous laugh because you start to genuinely wonder if he will come round and be normal again. We’re really lucky that a few of our family work at Alder Hey on different wards and so a visit from my cousin Danielle gave him a real lift. He wasn’t with it when she first arrived but sat up eating coco-pops soon after she left which was a winner.
At 11pm Lee left us for the day and I set myself up on the luxury superking sized torture device, I mean couch-bed, for the night. I managed to go asleep around 12 and then woke at 2 while the nurse was changing his drips over. He slept soundly throughout the night.
When the doctors came on their rounds we discussed the reaction and they advised that they wanted to push on with the third dose of Cytarabine but would add a antihistamine to the mix with the hope this would counter the reaction. I’ve been chatting to other parents about reactions and was advised by one to ask for hydrocortisone too as this is now given as standard in their hospital for all patients on cytarabine. As Jack is still on a low dose of prednisolone this wasn’t an option but something to consider for round 4 and beyond.
The good thing about this happening so early in to the protocol is that they can do something to fix it for the rest of the cycles. Ive got to look for the positive in the situation and see it as a lesson for us on how we need to manage things going forward. He’s really picked up as today has gone on to the point they have withdrawn all fluids and IV meds, they want to monitor his reaction and then give the last dose of chemo for this round in clinic tomorrow and then gets a break to recover for a few weeks.
When you are living these life challenges you just get stuck in and deal with it, when you observe someone else doing it you think ‘how the hell are they managing, I couldn’t do that’ but you can. When you have no other options but to be gritty you just are.
I spoke to my Grandma yesterday and she said ‘thank god you’re his Mum’ but no, its thank god she is my Grandma. I have learnt how to deal with life’s challenges from her and will continue to focus on ‘if she can overcome what she has been through in her lifetime and still live a happy life at almost 90 years old then so can I’.
She tells me that her dream when we were all kids was to see me and her other grandchildren grow up and have our own children, and she is doing that and grateful every day for this simple blessing. So despite this shit stick we’re carrying I’ll continue to remember that every day is a bloody blessing, you absolutely need to cease the day and be eternally grateful that you are here to experience it for all its beauty and all its challenges. Take the risks, go on the holidays, buy the shoes, attend the raves, have the babies, apply for the jobs, do the fundraising, ask that boy on a date (Marina Muirhead, I am looking at YOU) and enjoy as much of your time as possible with your friends and family.
‘Dream as if you’ll live forever, live as if you’ll die today’ James Dean.