Return to the Fishbowl (Day -11)

(Today Tim gives Bee a break from Blog duties and picks up the story)

After are a few days R & R at home we have returned to life in the Transplant Suite at the RCH, or ‘fishbowl’ as it’s less scarily referred to. Tomorrow, Max will begin his first round of chemotherapy and in 11 days time (hence Day -11), Max will receive his cord blood transplant. Bee and I are simultaneously terrified and emboldened; terrified by what Max’s little body is about to go through but emboldened by the courage and ease with which he has handled all his treatments so far. Hopefully he will kick chemo’s ass and sail on through to the transplant in tip top form.

Following the success of Max’s Hickman Line placement, we left the hospital on Sunday and returned home for a short reprieve from hospital living. Having had a taste of life in isolation, it was a good chance to psych ourselves up for Max’s extended stay. Hopefully it wasn’t too cruel on Max and that he isn’t expecting to be heading home again in a couple of days.

Max has got used to life with Mr Hose very quickly. That he now has a plastic tube sticking out of his chest hasn’t bothered him in the slightest. We’d heard all sorts of horror stories of kids (and adults for that matter) getting fed up with them and ripping them out, or of them becoming dislodged internally and causing all sorts of issues. No such problems for Max, luckily. Mr Hose has spent most of his time tucked away safely in a pocket sewn into Max’s singlet. Indeed, special props must be given to Bee and her awesome sewing skills for her tailored Mr Hose singlets, complete with satin lined pockets to accommodate in style and comfort your very own Hickman line.

We arrived back at the Hospital today (Thursday) and spent the afternoon settling back into life in room T2. We caught up with various doctors, nurses and our social worker to discuss Max’s upcoming treatment. Max’s dressing for his Hickman line was seen to and they decided to clean and re-dress it. Surgeons are usually averse to changing the dressing so soon after surgery as it can disrupt the healing of the wound. However on inspection, these concerns were overridden by the amount of caked on dry blood that was sitting under the dressing. To ensure that Max remained largely still during the redressing, we decided to chill Max out with some ‘Midazolam’ (appears to have the same affect as booze on adults) and some Dora the Explorer. And just on Dora, as annoying as that tubby little kid with the ill fitting t-shirt and bowl for a haircut is, she is proving to be quite the pacifier. With a dazed Max off in a world of talking backpacks and singing maps, the nurses were able to clean and change the dressing with little fuss. They also let slip that word has already got out amongst the nurses of Max’s fondness for brunettes; he is turning out to be an incorrigible flirt.

Max finished the day with some more Dora and the commencement of his daily ‘anti’ drug regime; antibiotics, anti viral drugs, anti fungal drugs, anti seizure drugs, mouth washes and nasal sprays. We are still to work out the best order in which to give them to him; do you start with the nicer tasting ones and work your way through to the disgusting ones, or vice versa, or do you mix it up? Any advice would be appreciated.