14th June – During COPADM Cycle 1
Meds this week: Cyclophosphamide, Rituximab, Prednisolone (Steroids), Folinic Acid, Doxorubicin, Methotrexate, Paracetamol, Oramorph
Blood Transfusions: 1
Artie has had some nose bleeds this week but they think it is from where he has the NG feed tube in, as his platelets are currently ok. His lips are starting to look swollen already and he also keeps putting his fingers in his mouth. He is drooling a lot and starting to struggle to eat, spitting his food out. The nurses and drs have explained that a condition called mucositis is likely starting, they tell me he is going to get very poorly which is why the NG tube in his nose will be so essential in feeding him. Mucositis is caused by the chemotherapy. Because the mucosal cells replicate quickly and like cancer cells these are destroyed quickly by the chemo. It causes ulceration and soreness in the mouth, and it also goes right down to their stomach and through their tummy down to their bottom. It means they can’t absorb food or drink either if their stomach is affected. It sounds horrendous. They have started using the NG tube to aspirate from the tummy (pull back anything in the tummy) and have found that it is full of bile and very swamp looking, this is another sign that the Mucositis is setting in. I am struggling to get oral meds down him because his mouth is sore and he is in pain so they have put him onto a morphine pump and we have to do these special mouthwash gels into his mouth 3/4 times a day with these little sponges. He screams in pain and a nurse has to hold his arms while I do it because he fights it so much. It’s awful but necessary. You can see how much it helps afterwards so I just keep trying to look forward. They tell me he is going to start getting really really poorly this next week. I am absolutely dreading it, my poor baby.
I had to put him under general anaesthetic again this week. He is having chemo injected into his spinal fluid. This is a preventative measure rather than treatment, and there will be many more to come. It doesn’t make it any easier having him fall asleep in my arms though and leaving him behind. The last time he had general anaesthetic was for the initial biopsy, bone marrow tests, CNS (spinal fluid) tests and putting his Hickman line in so he was under for about 1.5 hours. This time, they gave me a little buzzer, like when you are waiting for a table in a restaurant but much less fun. I left the ward where they do his proceedures and had literally made it back to Artie’s room and the buzzer was sounding for me to go back. It hadn’t even been 10 minutes, I was in such a panic, why was I being called back already. I was crying and ran all the way back, texting Paul to say, something is wrong, I am running back. When I arrived, the lady took one look at me and said, everything is fine, don’t worry and they had just called me because he was waking up from the anaesthetic. What I hadn’t realised is how quick just having the intrathecal chemo would be, but I know for next time. He will need this procedure fairly regularly during his chemo so I will be prepared for how much shorter they are and hopefully less panic for us both.
He has spiked a temperature today. The problem with this is that is is now what they call neutropenic so this puts us into the febrile neutropenic box. What this basically means is he has no immune system and has spiked an infection. He has no immune system to fight it off so they must go onto a combination of antibiotics immediately to help his body to fight any infection. But overall, any infection, bacterial or fungal, or any line infection can be so dangerous for a neutropenic child, it can lead to complications like Neutropenic Sepsis which can be fatal. So even the common cold can be so dangerous for Artie now. So he is now on a combination of antibiotics. His heart rate has shot up and he is very hot and feverish so he is also receiving paracetamol. He seems so sad, spaced out, in pain, he is sleeping a lot and started to not even get up or sit up during the day.
I have noticed his hair has changed. The texture has gone like a frazzled flyaway texture, almost like burnt hair. I took extra time to look at his tiny long eyelashes today to etch them into my memory. I took a photo too. His hair is expected to start coming out soon. I just sat there running my fingers through his lovely thick hair. It’s just hair, I know that, but it doesn’t make it any less sad, and as they keep telling me, it’s just showing that the treatment is working.
I’ve been here with Artie for 2 weeks solid and after some taking convincing I agreed to take a train home to get a bit of a break. I don’t think I will be doing that for a while. My mind was so busy all the way, I ended up scrolling through photos on my phone of Artie from when he was a baby and it just feels so incredibly unfair. He was so wanted and he is so loved and my world, why does this have to be happening to him. It was absolutely awful walking into the quiet house, Artie’s toys strewn on the floor, his little bed unmade, the devastation of that morning that we left 2 weeks ago still evident. I ran a hot bath, and just lay in it and let the tears flow and the sobs come. My heart ached so much. It was too much right now, more than I could cope with.