1st March 2018
We spent the weekend before with Lee’s family in the Derbyshire Peak District. It was just what we all needed. Jack had fun with his cousins, we laughed, drank and ate well. I have to admit I found it hard to fully switch off. The empty feeling in the pit of your stomach remains regardless of how positive you are; how many distractions are around you or how big the smile you force on your face is. I think it’s important to note this as I’m concerned that I may come across as a bit robotic sometimes. If you’re reading this as a parent of a child or a family member of someone older who has just received a cancer diagnosis; it’s OK to feel all of the emotions, I’ve gone through them all. I just choose to focus on the positive ones. It’s my way of coping with the situation and the way that I found worked best last time around. I’d encourage you to be around people who are realistic but upbeat. Practical but empathetic. Who talk a good game and make adrenaline run through your veins like red hot lava, you will need these physiological responses to face what’s ahead. Ultimately it’s Jack who’s facing the biggest challenges, he’s the one who has to cope with the nausea, tiredness and he’s the one with all the questions that I simply cannot answer.
We got back from our trip and did all the unpacking/washing and enjoyed Sunday dinner with my parents and brother. Jack wanted to sleepover at Nanny’s and right now we are all about choosing our battles wisely so….
Awful night’s sleep thanks to chemo-eve nerves/teething/leaping baby so we were all up very early. The consultant had told us to come to clinic at about 11ish. I am a bugger for travelling and am always too early so we rocked up around 10am. We had already visited the day case ward at Alder Hey as Jack needed to get his ‘gripper needle’ removed. We were welcomed by one of the nurse practitioners and told to take a seat in the bays. They have a block of 4 ‘day case’ beds for the 0-12 year olds and an area with seats. The beds are for ‘the poorlies’ as one of the nurses described or those that are in all day for chemo infusions/other treatments. We got ourselves unpacked. When you go anywhere as a family of 4 (with a baby) the baggage required is ridiculous, we quickly took over half of the seated bay.
Jack’s consultant was the first to visit us, asked him how he felt and then asked us to sign a consent form for the administration of chemo and made sure we understood the side effects. Next we met Donna who is one of the oncology outreach nurses who was going to Jack’s school that afternoon to do a briefing with them and explain about his diagnosis, treatment and the big chicken pox/measles risk to him. A communication is sent to all parents to explain this and to ask they report all suspected cases so we as a family can make a decision on whether to keep Jack off or not. This is VITAL as chicken pox/measles can be FATAL to a child who is immuno-compromised. She talked us through the hospitals procedures for admissions.
When a child is on chemo there are a few different things they look for which may mean a hospital admission is needed; Neutropenia (low white blood cell count meaning high risk of infection), severe vomiting which can lead to dehydration (especially in Jack’s case as he also suffers from Diabetes Insipidus), bowel movements (too loose or too hard) are just a few. Luckily, Jack was pretty much side-effect free first time round.
We met an amazing Advanced Nurse Practitioner called Ian, we explained how Jack absolutely hates having the sticky dressings removed. Ian went and got a few different ones to try and told Jack he could use the least sticky. So simple but such a big weight of Jack’s shoulders when he already has so much to potentially worry him.
Next to visit was the ward pharmacist to check whether Jack is better with liquid or tablet forms and to give us everything we needed to take home. We could have done with an extra suitcase just for the medical stuff; 8 weeks’ worth of prednisolone (a steroid that will make him moody, put weight on and not be able to sleep) omeprazole to take before all the meds to protect his tummy, oramorph (in case he has any pains from the vincristine or cytarabine as you can’t give calpol or ibuprofen when on chemo) and 3 doses of cytarabine to take home. On top of that was a bag full of dressings, wipes, saline, heptarin, syringes and a sharps bin for the Macmillan nurses when they come to our house to administer the 3 doses at home.
After meeting the new team who will help us we were visited by Pip the ward play therapist, she told us that there is a chef on the ward and gave Jack a menu to choose something to eat. The menu is similar to an American diner and all cooked on the ward for the children. Jack was super impressed as he was only ever offered a round of toast and a glass of orange at Manchester.
After a quick bite to eat it was soon time to go in to the side room to have a gripper needle inserted and the first two ‘pushes’ of chemo administered. Jack had been sat with some ‘emla cream’ on the area covering his port a cath (I just googled to check that’s what its called and apparently it is also used for men who suffer from premature ejaculation, the marvels and versatility of modern medicine). He’s really anxious about needles, and the needle on the gripper is pretty thick, the emla cream completely numbs the area so he wouldn’t feel it but that didn’t stop him perforating the nurses ear drums as she popped it in. He will get used to it as he will have at least 8 gripper needles fitted/removed over the course of the next 24weeks.
And just like that, the new protocol had begun. One push of vincristine & one push of cytarabine. We could go home.
The journey home was pretty uneventful, we updated family, ate and all went to bed thinking ‘well that wasn’t too bad’.
I woke up at 3.30 on Tuesday morning. I had gone to bed at 9.30 exhausted and Ruby had slept from 10ish without waking for the first time in weeks. I instantly panic when I realise I have slept for longer than usual and popped my head over to check she was still there. Phew.
Jack had slept in the bed with me and for the last half hour had been whimpering a bit in his sleep, I stroked his head and he seemed to settle. Then ruby woke for a feed. She settled and I decided I should probably try and go asleep again myself. As soon as I started to settle Jack sat bolt upright ‘I’M GOING TO BE SICK’.
Here we go.
Over the course of the next few hours he was sick about half a dozen times, we were told to expect this as a side effect of the cytarabine and so we weren’t too panicked. When he threw his morning meds up it was time to head in to Alder Hey. The team were waiting for us and we were quickly booked in and Jack had IV fluids and anti-sickness meds set up. Within half an hour he was much better & had day 2 of the cytarabine while we were there. We were home by around 2ish and once again Mum had sorted the tea for us. Jack’s appetite has diminished a fair bit and so he went to bed on an empty tummy and slept for 12 hours (which has never happened in 7 years!).
The anti-sickness meds have worked wonders and he was STARVED when he woke up, 30 weetabix (minis!!) and 2 rounds of toast and then a day of ipad/playstation and we even managed to do some homework. We are keen that Jack stays as involved with his learning as possible, if he is feeling well he will go to school, the school (especially his two class teachers) have been very supportive and I’m in daily contact with them both. It’s important that he goes in when he can as it’s likely his appearance will change with the steroids (round face, weight gain) and also his mood may be effected. We don’t want his friends to be shocked by this and so the more they see him, the better.
We have started to see some more emotional responses from Jack, he’s getting frustrated, upset and annoyed. This could be through the steroids but obviously he has A LOT of stuff going on in his body and mind and so we are watching and listening to him carefully.
The Macmillan nurse came around 2ish to administer the 3rd day of cytarabine and also gave us a letter to send to RyanAir so we could cancel our flights. Unfortunately we aren’t able to fly while he’s on this part of the protocol. They were extremely good actually, despite all the bad press they get and confirmed a full refund within 10 days.
Uncle Keiran came to visit in the evening which really lifted his mood as they have very similar interests (despite the 18 year age difference haha!).
When I woke up this morning I realised I hadn’t showered since Tuesday morning nor left the house other than to go the hospital so I sorted myself out and had a couple of hours mooching round the shops. I found myself buying those masks that you see oriental people wearing when it’s dead smoggy in Hong Kong, the thought process was it might be handy if we go out to a really public place? My thoughts are flicking wildly all over the show at the moment!
The Macmillan team were due around 1.30 to do the final dose of cytarabine and to remove the gripper needle from his port as it’s no longer needed until the 19th March. I think I’ve mentioned before how much Jack dislikes having dressings and plasters removed. When the nurse arrived I gave her the heads up and she was so patient with him, letting him take his time to talk to her about why he didn’t like it, giving him chance to calm himself and eventually managed to get all done with minimal tears/screams! We have definitely started to see a bit of roid rage creeping in, I have been the target for a few fiery remarks and so has Lee. While we were trying to coax the dressing off him Lee piped up with ‘I’m not very good at taking off those plasters’ to which the nurse said ‘I’m sure you are good at other things, what other things is your Dad good at Jack?’…..’he’s really good at WINDING ME UP’ through gritted teeth came the reply! OOOOF. It probably wasn’t the best time for Lee to give up his e-cig.
The nurses are so well trained and have such a good manner with the kids, I don’t know how they do it though. My nerves would be shot!
So we have made it to the end of the first cycle of chemo, 7 more to go over the next 24 weeks. We are told that there may be some side effects that show their faces this weekend. We will deal with them if needed.
To end on an upbeat note we have been contacted by three separate people who are keen to do some fundraising for HistioUK which is the UK Based charity that leads of research and support for parents & patients with the various histiocytic diseases. I am always humbled by this as I know how much the charity needs donations and fundraisers to keep doing what they do and these sponsored events are usually a good laugh (maybe not something as big as a JOGLE though hey Sara?). We will be sharing more on that in the coming weeks.