It was only fitting that Orla commenced her Chemotherapy on St. Valentines Day, our love for her is the primary motivation to put her through this.
The chemo in the context of Orla’s treatment is termed conditioning. The chemotherapy is the agents used to condition or prepare her body to accept the transplant. The day started off well but it didn’t stay that way unfortunately and the best part was the fact that we don’t have to live it again. The surgeons made a visit to check she hadn’t done anymore acrobats with her lines, which she hasn’t. Funnily enough they are still scratching their heads about what happened with the first Hickman’s but the BMT staff aren’t surprised, they reckon things such as it are common. To be honest though, the BMT aren’t fussed by much, they seem to have a solution for every problem which is comforting but it’s hard to completely let go and trust 100%.
Orla sat happily playing in the bed watching TV etc while the first chemo agent, Fludarabine, was administered intravenously through her Hickmans line. This can cause nausea so she was given a medication to help with this and it was given over 1hour. The next agent is called Busulfan and was administered more slowly over 3 hours. The staff had to take blood samples to measure the levels of Busulfan in her blood 1,2 and 4 hours after the dose was completed so the lab could work out if her dose is correct. It has actually been increased for the next dose tomorrow, which is quite common. Throughout the Busulfan infusion, Orla appeared to be dribbling a bit which we thought was initially nausea, possibly a small bit of vomit. She became increasingly tired looking, however she had been awake since 4 am, as had I too! She was becoming irritable which we assumed was over tiredness and since she has never been the best sleeper we put it down to that. Around lunch time her temperature became high again…..For some reason, she either has a bug somewhere, another virus or the effects of last weeks reoccurring, and the other issues became more apparent as the night went on. She did perk up after some paracetamol which she couldn’t have till after the dosing bloods had been taken. An antibiotic was also started after blood cultures, urine and faecal samples were taken. In the evening, around 6 pm, we gave her a bath and following this she crashed asleep in the bed but then became unresponsive and the nurse had to call a “met call”. I unfortunately know that this essentially means….get medical help quick . It was at this point, I had to leave the room, the tiredness and the stress of the day had all caught up with me. Ed was here and a little more fresh than I! She came round to find about 10 people standing around her bed which she of course wasn’t impressed by at all!! So the problem was not the expected chemo but the anticonvulsant medication she was having to prevent fitting that can be caused by the Busulfan and not helped by the high temperature. She has today been changed onto another type of anticonvulsant and is less drowsy although still pretty groggy.
The other issue has been her breathing caused by the anticonvulsant decreasing her muscle tone, so her breathing is a little shallower than normal and she can’t cough as well to get rid of secretions. She is hence now requiring a small bit of oxygen when she sleeps. This morning the anti convulsant was changed, her temperature has settled as the day has gone on and they are keeping a strict eye on her breathing and closely watching her fluid balance, making sure what goes in comes out. The intricacies of doses and drug interactions are part of the rollercoaster ride we are now on, nonetheless it was a big day mixed with the emotions of commencing conditioning.
A funny story however amongst all the drama last night…..Ed told the night medical and nursing staff that Orla had refused her bottle and this is very out of character, only to discover the next morning that he had been trying to feed Orla the peptide mix intended for her nasogastric feeds. Essentially, this would have been like giving someone soy milk if they are used to cow’s milk, so no wonder she refused to drink it!! When the nurse did offer her cow’s milk, Ed assuming she didn’t like the hospital formula, she of course knocked it back. The dietician discovered it this morning, in his defence they are kept in the same bottles!!
Overall, today has been a better day and Orla although needing a small amount of oxygen, is breathing better. She has slept quite a bit which she needed. The intensive care doctors have seen her as a follow up to the metcall and have no concerns and the BMT team of course don’t seem too fussed!! No, they do take things seriously but they have seen all this before, it is us who hasn’t.