Day -6: A Little Bit Febrile

fe·brile /ˈfebrīl/

Adjective:
1. Having or showing the symptoms of a fever.
2. Having or showing a great deal of nervous excitement or energy.

I think we were all a bit febrile today.

After an awful night of sleep, when I didn't actually fall asleep until 2.30am, I was woken 3 times between 2.30am and 6am by the alarms on the various machines beeping incessantly and wanting the nurse's immediate attention. Our overnight nurse Chrissy seemed to take forever coming to our room each time an alarm went off and I pressed the buzzer, but in actual fact, she was there as quickly as she could be, and looked after Sean with the greatest of care.

Sean slept mostly through the night, only needing to be comforted a couple of times. By 6am, he was wide awake and needed cuddles, so I got out of bed and gave him cuddles and kisses. Jonathan arrived just after 7.30am, and looked like he'd had about as much sleep as I did.

The air was buzzing with excitement and trepidation as the medical team got everything ready to start the chemotherapy. It all started with the bulk of the transplant / oncology team paying us a visit during morning rounds. Professor Marshall led his team into the room and warmly greeted us. He well recalled meeting us on 9 January when Sean was diagnosed with SCID. Professor Marshall chatted with us briefly and commented on how well Sean looked and how much weight Sean had gained since he saw us last. As we did not have any questions, Professor Marshall and his team left the room to continue their rounds.

Dr Gray had organised for Sean to have an IVIg infusion prior to chemotherapy starting, and he had hoped the infusion would take place yesterday. Due to a mix up, the IVIg did not arrive until this morning, and our day nurse Emma had to hurry to get the IVIg infused before starting the chemotherapy. The first of the chemotherapy medications was due to be administered at 11am, but due to the delay in infusing the IVIg, everything was pushed back an hour.

Sean fell asleep during the infusion. He was still very much full of life this morning, wanting to play and explore the room, but after such an early morning, Sean happily napped while he got some new antibodies. Jonathan and I busied ourselves with our iPhones, and before long, it was time to start the chemotherapy.

The first of the drugs to go in was the alemtuzumab. Emma gowned up in protective gear, complete with a purple robe, eye goggles, a face mask, and purple gloves. She put the medication into a chamber and connected the line to Sean. The chamber itself got some protective gear too - Emma wrapped a shield around the chamber as the medication is light sensitive. To prevent Sean from feeling too unwell, he was given some Baby Panadol and a dose of Phenergan. We were warned that the Phenergan could slow Sean down and make him drowsy, and it took a couple of hours for that effect to kick in.

This was the point of no return. Like it or not, the chemotherapy had started.

The treosulfan was next, and Emma did the same thing - gowned up in purple attire, decanted the medication into another chamber, shrouded the chamber and hooked the line into another connector on Sean's body. Sean was a bit lethargic, and laid in his cot for a while, not wanting to get up or move about.

The third and last of the medications was the fludarabine, and this was pushed through like the others. Sean was still lethargic, and the heart rate monitor started beeping. Sean's heart rate was quite fast, fast enough for the alarm to be sounding, regularly, and his breathing was also a bit quicker and slightly more laboured. We thought it would settle down, so we didn't notify Emma immediately.

Turned out we should have called her straight away. Sean was febrile, and he needed to be seen by Dr Andy. Emma went off to find Dr Andy, and he and Laura came into the room together to check on Sean. They assured us that 96% of transplant patients who receive chemotherapy do become febrile and Dr Andy prescribed some more Baby Panadol and Phenergan. Within an hour, Sean's heart rate was back to normal and his temperature was within the normal range.

I had a meltdown just after Emma started the treosulfan. I sobbed and wondered if we had done the right thing by consenting to this treatment. I had signed on the dotted line that permitted the doctors and nurses to inject toxins into my son's body. Toxins that had the potential to kill him. All I could think of was "What have I done???"

Jonathan was quick to try and comfort me, telling me that we were doing the right thing, and that everything would be OK. I wish I had his confidence, or bravado.

Mum came by to bring us some food for dinner. After being upset with her on Saturday night about her and Dad continuing their holiday plans regardless of how much we needed them to be in Sydney, Mum and I messaged each other yesterday to try and clear the air. I still felt Mum didn't understand why I was so upset with her - I felt like she and Dad were abandoning us in our time of need. And even today, when she came by, she apologised because I think she felt she had to apologise.

In a time when I really want to be selfish and think about only what I need to help me get my son better, I had to stop and think about what the people around me needed. Perhaps the reason my parents chose to continue on with their holiday plans was because that was their way of dealing with this whole situation - run away and hope everything would have worked out by the time they came back, or they were and continue to be in denial about how sick Sean really is. Either way, they did not see how they could help by being in Sydney - my whole family had never been touchy-feely; it made my parents uncomfortable to have to physically comfort a crying daughter (Dad in particular had told me in so many words that he did not deal well with me crying in front of him), so I guess it was just as well they did continue their holiday plans. Mum said, in so many words, that the only way she felt she could help was by bringing us food.

Mum went on to say that she had read the blog entry from Saturday night and that she was sure Vinay had Sean's best interest at heart when Vinay gave me his opinion of who should and shouldn't be allowed in Sean's hospital room. I knew that, because Vinay always had our best interest at heart, but again, I had to concede that even if Grace and Vinay did cancel their holiday, they would be too busy to come to the hospital anyway, with Vinay running a busy pharmacy and Grace running around after 3 active kids.

In any case, here's the last thing I'll say about "Support Crew-gate". Jonathan and I were merely following our doctors' orders to supply them with the names of 4 people who we could count on to be our support crew. The doctors were very explicit with instructions that we needed to choose people who would be able to come into the room and provide us (all three of us) with comfort and support throughout the transplant journey, even if it was to give us a hug while we cried. We felt my parents would have been upset if we didn't include their names on the list, as would Grace, but in light of their holiday plans, we included our close friends Elissa and Penny on the list.

By 6pm, the first day of chemotherapy was done and dusted. Overall, Sean did amazingly well - he was a bit grizzly for a little while, but he was mainly high spirited and was still quite active and fun. We expect him to become more lethargic and less active as we continue the chemotherapy.

Throughout the day, Sean's appetite started to show signs of slowing down, but he was still happy to drink his formula. Again, we are expecting the appetite to slowly disappear, and when he does lose his appetite completely, there are steps and measures in place to ensure he still received his daily nutrition requirements.

The day's activities wore out our little man, who was asleep by 8.30pm. Part of the chemotherapy protocol was to change Sean's nappy every 2 hours. There were two reasons for this: to measure Sean's urine output to ensure his kidneys were working (Sean had been on a drip so he was getting plenty of fluids), and to ensure his bottom did not become irritated and develop a nappy rash (the chemotherapy drugs are secreted through urine, and it could become quite caustic on Sean's bottom). The 2-hourly nappy changes would have to be done until midnight, and then Chrissy the night nurse would change Sean's nappy at 4am.

One day down. 5 more to go. I really hope Sean sleeps through the nappy changes, or at least goes straight back to sleep if he is woken. I need some sleep tonight.