12th June – During COPADM cycle 1
Meds this week: Cyclophosphamide, Rituximab, Prednisolone, Methotrexate, Folinic Acid, Doxorubicin, Paracetamol, Ondansetron, Vincristine.
Blood Transfusions: 1
We are a week into the first chemo cycle. He’s had the first COPADM pre phase which is intended to firstly shrink the bulk of the tumour (which it did, shrunk it by 50%). This week is where the real tough phase kicks in.
It’s been a sad week, watching my precious little boy get more and more sick, not from the cancer, but the chemotherapy. I know it means that its working but it doesn’t make it any easier to watch. I walked down the the beautiful chapel in the hospital and just sat there in the silence and peace, the incredibly painful thoughts consuming my brain. I prayed god could hear me and I prayed for Artie with everything I had. I prayed every day for him, but it was nice to feel the peace of the chapel this time.
There has been a LOT of crying this week, he’s been getting really distressed although hasn’t been able to express why or what is bothering him. All you want to do as a Mum is be able to make them feel better. The steroids are making him so angry. He’s been really aggressive, throwing things and kicking and screaming. It’s made a difficult week even harder. He’s also started to be sick, normally when the chemo starts (cyclophosphamide) so they are giving some anti sickness medication to try and combat this. He has also been really pale and tired. They check his blood each day and found that his Hb, Haemoglobin levels had dropped to 70 (Normal levels are about 110-130) so he needed to have his first blood transfusion. This is completely normal during a child’s cancer treatment I am told they can need many many blood or platelet transfusions. His pulse keeps dropping so the sats machine alarm keeps sounding through the night. I’ve noticed his eyes suddenly don’t close properly when he is asleep either, I can see his little eyes when he is asleep.
He has been so sad, just like someone had snuffed the happy Artie out and just left this sad little shell. He’s sick of the pain, the nose bleeds, the sick. He just doesn’t understand why he feels so sick, he’s 3, why would he. Then we had a little knock at the door and when we opened it, it was Spiderman! Artie was amazed! He came in and sat by Artie’s bed, and chatted to him. Artie held onto his hand for ages and looked at him intently while Spiderman chatted to him. After Spiderman left, I cried. You know visitors come to the hospital but you never quite understand how much their visit can mean to a child stuck in hospital. That little visit brought a flicker of my boy back, a smile, Something to made his day a bit brighter in-between the bloods and transfusions and chemo and all the horrible side effects it brings. I miss his happy little face so much.
Not only did Spiderman drop by, but the storm troopers also popped in too. Artie thought they were very funny to look at. Friends have rallied round this week sending things to keep Artie busy, toys and stickers, bubbles and glow sticks, as well as meals to keep Paul and I looked after. I don’t have any support from a large chunk of my family (I cut one family member off so the rest refuse to see me or Artie) so I felt so appreciative that we still had a lovely network of support in our friends. I needed it now more than ever.
The nurses and Drs are all telling me he is going to get very poorly in these next couple of weeks. I am just dreading it.