I’ve been sharing some of our Acute Lymphoblastic Leukaemia journey since the Dinosaur was diagnosed in February 2022 (read more here). I thought it would be helpful to start sharing a little more of the day-to-day as this is a long treatment process. For us, the end of treatment will be in March 2024 provided that we have no chemo holds due to infections or low blood counts. We are now at week 17 which is the final week of the consolidation 2 phase of treatment on the ALLTogether-1 Standard Risk Protocol.
Week 17, day 118. Today we are off to Bristol Royal Hospital for Children for a routine echo to make sure that there is no damage being done to his heart. Some of the chemotherapy medications can cause the heart to become enlarged so he has had an echo already and this is just a follow-up. The good thing about this appointment is that he will not need to have any pokeys (injections, port access or blood draws) so he’s not too bothered about this appointment. It’s also quite a fun appointment because there is a multisensory machine that children can play with when they have their echo.
Week 17, day 119. Today is Nutricia delivery day. A couple of weeks ago we spoke with the dietician in Bristol and the Dinosaur had a nasogastric (NG) tube fitted as his appetite had been off for some weeks, his weight had dropped below his starting weight and taking oral medication was becoming more and more challenging. His dietary plan is for us to offer and encourage food first but he can be tube fed if required. So far we’ve been about 50/50, some days he will eat well and other days he won’t so on the days when he won’t eat or he won’t eat much then we give him a liquid feed through his NG tube. This and the medications being administered through the tube as well means that we require an awful lot of supplies such as syringes in varying sizes, giving sets (the tubing that goes from the feed bottle, through the pump and into the NG tube), liquid feed and PH strips so that we can test the acidity of his stomach acid to ensure the tube is still in the correct place every single time we use it.
We are also having a visit from the Gloucester dietician and the community NG nurse as the Dinosaur’s care is predominantly carried out in Gloucestershire. They will just be talking us through everything to make sure we understand how to use the NG tube, how we can order more supplies, who we need to contact if we have any worries or concerns and what to do if it becomes blocked or comes out.
The other exciting delivery that came today was a Hug in a Blanket. Hug In A Blanket provide personalised blankets (made from knitted/crocheted 6″ squares) to babies and young persons living in the UK who are aged 0-18 and have long-term, life-limiting, terminal, physical or mental health conditions. As you can see, he absolutely loves it!
Week 17, day 120. We had planned on having a fairly quiet day but unfortunately, the Dinosaur’s NG tube become blocked by some of his medication. This meant that we needed to see if the NG community team were able to come out and replace the tube for him, if they were not able to come then we would have had to take him to the hospital to have it replaced. Luckily they were able to get to us in the afternoon to replace it even though there was a cycle race going on in the area and there were lots of road closures.
I also took the opportunity to carry out some life admin for him; I phoned the GP to see if they had received his prescription request for barrier cream, adhesive remover wipes and hydrocolloid dressings. They had but it hadn’t been issued so I ordered these for him and arranged for the prescription to be sent to the pharmacy when it is ready; next, I called DWP to chase up the DLA application because it had been 11 weeks since they received it and we still hadn’t heard. Thankfully the decision was made a couple of days earlier and was successful; next up was to chat with a reporter about the Leukaemia Diary that I have written and hopefully she will be writing an article about it in the next few days; while I was on hold with DWP, I text the play therapist to arrange some activities for the Dinosaur for next week when he is in hospital for a lumbar puncture, intrathecal, intramuscular and intravenous chemotherapy. I had planned on filling in an application to Make a Wish but I didn’t get a chance to do that in the end so that’s a task for another day. Nobody warns you that when your child is diagnosed with cancer, there is a vast amount of admin to carry out on a weekly basis. This is one of the main reasons I created the diary, to help keep on top of all this admin.
Week 17, day 121. As part of the treatment for leukaemia, the Dinosaur needs to have a blood count every week to keep an eye on his haemoglobin, white blood cells, platelets and neutrophil levels. This is so that they can keep an eye on how the chemotherapy is affecting him, know whether he needs another blood transfusion and know how well controlled the leukaemia is. Sometimes we have to go to the hospital for this but most weeks a Clinical Nurse Specialist (CNS) comes to our house to carry out a finger prick blood test for this. This week we had nurse Kelly come and do it at home. She also dropped off some extra medication syringes for us and some different medicine to replace the one that blocked his NG tube earlier in the week.
We also received a starting school pack for the Dinosaur today which is both scary and exciting! I can’t believe he’s old enough for school and I’m more worried about him than I would have been had he not been ill. The pack included information about some introduction sessions for the children which will be coming up in the next couple of weeks. As these will be before he gets to maintenance (the final and longest stage of treatment and the point at which he would be allowed to return to preschool) I have asked his medical team if he can go to these. If he can then the other issue I have is that the training that has been arranged for the school staff who will be looking after him takes place after the first 2 introduction sessions. Once I get the go-ahead from his consultant then I will contact the school to see how he can safely participate in these sessions, hopefully, they will allow me to remain onsite so that I can be present should anything untoward happen such as a temperature spike or his NG becomes loose.
Week 17, day 122. Today was a relatively quiet day for us with no appointments or anything out of the ordinary. In the afternoon I attend a virtual meeting with some parents from the children’s oncology and haematology ward at our shared care hospital as well as the Lead CNS, the Matron and the Ward Sister. The aim of these meetings is to improve the lives of the families who find themselves there. We have been working on small improvements like cutlery & crockery, a freezer and some meals or snacks available in the parent’s kitchen as well as bigger things like psychological support for families during treatment and beyond. Currently, psychological support for families affected by childhood cancer does not exist in Gloucestershire but this is not for want of trying.
After school we popped over to Cribbs Causeway to look for Father’s Day presents for Daddy Dino, Grandad with the Beard (my Dad) and Grandad Rog (Daddy Dinos Dad). We had a lovely couple of hours wandering around the shops and doing a ‘normal’ activity. I will never take things like this for granted again as simple activities like popping into the shops are fraught with anxiety (what if people stare or are rude, what if he picks up an infection, what if his tube gets caught on something, what if he’s sick, what if we can’t find a disabled parking space, what if the disabled toilets are out of order, what if the lifts aren’t working…) and military level planning (have I got all the things I need if he needs a feed because he doesn’t want food; PH strips, a syringe for aspirating, the pump, the stand, a giving set, the feed, a clip for the giving set tubes, a syringe for the flush, spare tape, scissors, adhesive remover wipes, warm water, a cup to draw the warm water from, his feed backpack, spare clothes, wipes, thermometer…).
Week 17, day 123. This morning we went to the North Somerset Showground to watch the Dinosaur’s uncle and his friend take part in a 5k inflatable obstacle race to raise money for Macmillan. It was a fantastic morning and great to see so many people out and raising money for so many amazing causes and there were a fair few fancy dress costumes to spot as well.
The Dinosaur had a little bit of trouble with his NG tube all morning, when I tried to do his morning medications, I couldn’t aspirate it (pull some fluid out to test the PH level to make sure it is still in the stomach) and there was a small loop by his nose where it had come partially out. Whenever I tried to push it back in, it popped straight back out again. While we were at the race, the Unicorn & the Dinosaur were playing and the small loop got caught and became a much larger loop. Luckily this time I was able to push it back in and retape it in place. This time when I tested it I could aspirate it easily so we managed to avoid another emergency hospital trip for a replacement.
In the afternoon we popped back to Cribbs Causeway so that I could head to Currys to test drive some vacuum cleaners. The ones I already have just were not up to the task of getting up Millie’s fur. In the end, I went for a Shark XL Anti Hair Wrap Upright Pet Vacuum and as you can see below, it is unbelievable! This was just one push with the vacuum and the previous vacuum of the room had been done 2 days prior (Millie is blowing her coat which is why there’s so much fur).
Week 17, day 124. A day for being ‘lazy’ and doing all those little jobs to prepare for the week. Sunday usually consists of laundry, bathing the children, finishing homework, getting things ready for school and meal planning for the week ahead, Today has been no different and there’s lots of preparation to do for next week as the Dinosaur will be starting the next phase of treatment tomorrow which is Delayed Intensification (DI). In the coming week he will have a general anaesthetic on Tuesday so that he can have intrathecal methotrexate (chemotherapy into the spinal fluid), he will be starting dexamethasone again for a week (I can’t wait for the hanger and the ‘roid rage – said no chemo Mum ever!) and on Wednesday he will be having vincristine (chemotherapy as a drip through his port) and doxorubicin (another chemotherapy as a one hour drip through his port). The doxorubicin is not always given as the current trial means that some of the standard risk patients are given it and some aren’t. the Dinosaur has been randomised into the group that will receive it. Doxorubicin is part of the standard treatment for standard-risk children so even if he wasn’t doing the trial he would still be having it. This may also be the drug that finally makes his hair fall out, up until this point he’s been extremely lucky and only had a little bit of thinning near the beginning. Week 17 feels a little bit like the calm before the storm, especially as next week is a steroid week.
Week 17 Review
All in all, it’s been a fairly good week, there have been a few challenges with the NG tube but it’s still early days so I’m sure we’ll be able to iron those out as we get used to it. Week 17 has been kind to us compared to some of the weeks we’ve had so I’m ending the week feeling positive.