3rd June 2019 – COPADM Pre Phase Week
Artie went under his general anaesthetic on 1st June and we of course established with the scans that there is a large amount of fluid in the pleural space underneath the lungs which is making it difficult for him to breathe (this is caused by the cancer). He has been coughing a lot and crying in pain about his tummy. It absolutely breaks my heart that he has been complaining of tummy pain and I’ve been putting it down to his dairy poisonings. It makes me really sad and makes me wonder how long and how much pain he was in. He has been in pain when going to the toilet and been really distressed. Its really upsetting to see how fast the cancer is making him sick too, as well as the chemotherapy. His tummy looks so big and swollen now, his belly button is really popped out, it’s really noticeable now.
We have had to keep his bed elevated when he is lying down or sleeping because he is struggling with breathing. He had been on an oxygen cannula for the last 24 hours but it wasn’t enough and he had to have a nebuliser to help his lungs. Trying to get a 3 year old to understand that he needs to keep this noisy mask on his tiny face wasn’t an easy task, he found it really scary and kept crying and pulling it off. It’s awful when you just need them to do something to help themselves but they won’t do it. Toddlers can be stubborn creatures at the best of time but when it’s something as important as this, we had to keep persisting, it only takes 15 mins, but 15 minutes is a long time for a toddler.
In the end Teddy lent a hand and he also had a mask on, so they did it together. He’s had to stay on an oxygen cannula in his nose overnight which causes him to have a disturbed night along with the coughing and wheezing, and of course the uncomfortable, swollen tummy.
By the night of 3rd June, a chest x ray showed that the fluid had reduced enough to take the oxygen cannula, that was such a relief and it made me wonder how the tumour was reducing. 50% reduction was such a lot, could that much really happen in a week? His tummy did seem less swollen although he was still uncomfortable and in pain and is very tired and exhausted.
He’s been having to take oral steroids this week, and it’s making his heart rate dip low a lot. He wears a heart and oxygen monitor at night and it kept waking me to alert that it had dipped. As a Mum, every tiny little thing makes you worry they are okay, but the nurses reassured me that the steroids did this, and they were keeping an eye on him throughout the night. I wasn’t getting much sleep though, I was exhausted. Most of the time I slept when Paul came up, and he would leave late at night once I’d had a good few hours sleep. I just couldn’t settle unless someone was watching my baby.
We also received our staging this week. Stage 3. It wasn’t the Stage 1 or 2 I wanted, but I already knew there was a swollen lymph in the chest so I knew that we could have only ever received a stage 3 or 4. I was so happy that it hadn’t spread to the bone marrow or CNS (spinal) fluid. I was so grateful. We were coming towards the end of the pre phase chemo so a scan was looming to see how much the tumour had reduced. Come on Artie, we can do this x