Week 19, Day 130. We decided to get out of the house for a couple of hours but as it was a rainy day we thought we’d do something indoors. The Unicorn, the Dinosaur, Nanny and I went to The Studio Cinema, Coleford to see the latest film in the Toy Story franchise: Lightyear.
Lightyear is the prequel to Toy Story and tells the story of Buzz Lightyear and his Space Force Team. In the original Toy Story movie, Andy gets a Buzz Lightyear doll from his favourite movie, this is that movie! The children really enjoyed the film however the Dinosaur did get a little scared in places but it was nothing that a Mummy Cuddle couldn’t rectify.
Week 19, Day 131. Big day today! Not only is it Father’s Day it’s also Cancer Research Race for Life Day! The children and I decided that we would take part in a 3k Race for Life so off we went Cwmbran along with Millie-Bear, Daddy Dino, Nanny, Grandad & Uncle Beep. When we set off, the Dinosaur started in his ‘safari cubby’ (his wheelchair) and the Unicorn wanted to run. Before we had even made it to the 1k marker, the Dinosaur decided he wanted to run as well so he got out of his cubby and jogged along with his sister. We had to keep stopping for a rest and drink but all 4 of us (Millie-Bear came too) made it across the finish line in a very respectable 50 minutes.
Week 19, Day 132. Today was a tough day. When the Dinosaur woke up he was complaining of leg/ hip pain and point blank refused to walk. We were warned that this was a possibility after having vincristine and dexamethasone last week. He may also have overdone it a bit the previous day when we did our Cancer Research UK 3K Race for Life so it’s been a bit of a lazy day.
Week 19, Day 133. We had another quiet day at home because the Dinosaur was still having trouble walking. On the plus side though there was an article about us and the Leukaemia Diary that I’ve created in the local paper!
Week 19, Day 134. It was off to the hospital again today for more chemotherapy. This time it was vincristine and doxorubicin again so that meant that the Dinosaur would need to have his port accessed (have a wiggly). Normally he gets incredibly distraught by this and is inconsolable, It usually takes 4 people to do it, one nurse to actually carry out the procedure, one to hold his legs so nobody gets kicked, one to hold his arms and keep him still and one to try and distract him. This time the play therapist brought along a VR headset to try while they accessed. He did get upset beforehand and as they were doing it but nowhere near as distraught as he normally does. Once the wigglys were on, he instantly calmed down. It was such a huge improvement that the play team purchased another VR headset so that more children will have the opportunity of using it as a distraction.
Week 19, Day 135. Wow! What a day! The Dinosaur is due to start school in September and today he was able to go along for his very first taster session. He was only in for 2 hours and I remained on-site (but out of sight) the entire time so it may not seem like much but to us, it was a huge achievement. Today was the first time he has mixed with others his own age (barring a couple of meet-ups with his cousin) since January.
Treatment wise we are approaching maintenance which is the final but longest stage of treatment and will last until March 2024. Treatment in maintenance is far less intense than any of the other stages but will require oral chemotherapy daily, intrathecal chemotherapy (injection into the spinal fluid) every 12 weeks and IV chemotherapy every 4 weeks, as well as broad-spectrum antibiotics every weekend, anti-sickness medication, anti-acid medication to prevent stomach and mouth ulcers, pain relief for the days he can’t walk, tube, feed on the days he won’t eat… it’s certainly not going to be a walk in the park.
Add to that the fact that he remains immunosuppressed so is virtually guaranteed to need several hospital stays (for 48 hours at a time) for antibiotics over the remainder of treatment.
All in all, I’m thrilled that he could visit school and just be a ‘normal kid’ for a couple of hours. I’m thrilled that he enjoyed it so much that he didn’t want to leave. I’m thrilled with how fantastic the school and NHS staff have been and will continue to be to make this possible for him.
BUT I’m also terrified.
I’m terrified that he’ll pick up any number of bugs when he starts properly and that he will miss out on so much.
I’m terrified that he’ll have to go through additional medical trauma because he’ll need to have extra antibiotics. I’m terrified he’ll be unintentionally excluded from things like parties because he’s not allowed to go to soft play. I’m terrified he’ll be too tired to do full days at school or be too angry from steroids to make friends. Plus all the normal worries you have when your child starts school.
For my own sanity, we need to live day by day. Today has been a good day and I’ll take that.
Week 19, Day 136. Today we were lucky enough to have another good day and were able to attend the Unicorn’s school sports day in the afternoon. It’s the first sports day she’s had since 2019 when she was in year 1, she’s now in year 4 so it was wonderful to be able to go to school to watch and cheer her on.