Here we are again, still waiting.

Here we go again

Into clinic and readying ourselves mentally for another round of chemotherapy (and the aftermath) that we need to get Alex through. Not what anyone ever wants to be doing on a Thursday afternoon, but there we were. Into clinic, they accessed his port and did the usual blood tests then transferred him to the ward for the night. The great news was that while he was accessed he wasn’t “plugged in” to the drip machine so he was pretty free to roam around the room as he wanted which pleased him no end.

In the lead up to Alex’ MRI on Friday morning I had a very sad conversation with one of the other parents who bluntly stated to me that she hopes our results are better than theirs as they were told that their gorgeous little girl had (if they operate again) 12 months. It was this conversation that brought home to me in the most shocking way, that despite enduring this long and rough road we’re on… There’s still no promise of a positive result. Our heart goes out to the family.

Friday morning rolled around and we were escorted down to radiology ready for the MRI, the good news in preparation for this was that Alex takes anesthetic very well; the bad news he’s not very good at coming out of them! The anesthetics consultant asked me about this and offered to give Alex a sedative to help him come out of the sleep in a more peaceful manner, thankfully it worked quite well. When he was brought back to the ward he was awake but very quiet and calm.

Almost immediately after his return the nurses on the Michael Rice ward started hydration to make sure he was ready for chemo that afternoon. The next 48 hours really went as expected; he had his chemo, he lost his appetite and slept a fair bit. Thankfully Sunday was a rest day for him, basically meaning he was on maintenance fluids and really didn’t need much attention from the nursing or medical staff at all.

Monday rolled around and the plan was:

  • 9 am – start 2 hours of pre hydration
  • 11 am – stem cell rescue (return of the harvested cells from pervious round of chemo)
  • 11:30 am – start 4 hours of post hydration
  • De-access, GCSF injection and home ASAP once this is finished

and it went very well, after the harvest and hydration we were out of the hospital just after 4:40 so it really did go quite well. The weirdest thing for me out of the stem cell rescue was the smell that came from Alex’s breath for about 2 days afterwards, it was like creamed corn… very strange, not unpleasant but not something I would choose to smell.

Home… I remember this place!

We were even home in time for dinner, which was really nice to have a home cooked meal straight off the stove rather than cooked, boxed, transported and reheated. Off to work the next couple of days for me, normal life and then Thursday was a lovely public holiday. Both the kids slept in till nearly 8:30 which was amazing, truly amazing. Unfortunately the little man was suffering some nausea and vomiting from this round more so than the last one’s. Completely random and with no warning too, but we were managing it as best we could. Not eating and not drinking much was catching up with him though.

I’m not quite sure how but I managed to get both my family and my sisters family invited to Mum and Dad’s place for dinner, not complaining at all that’s for sure. It was a nice night and good to relax a bit, but there in lies the danger. When you’ve been going and going, stressed and tired for a while and are unfortunate enough to be a migraine sufferer guess what?

Owww my head!

That was an absolute cracker of a migraine, I haven’t had one like that for a while. It laid me up for the best part of the full day on Friday when I was supposed to be taking Alex into clinic for follow up and routine blood tests to ensure he’s not neutropenic again. When I emerged from my slumber, the good news was that Jo had taken Alex to clinic and Jo’s Mum and Dad had come to look after Jenny and she wasn’t just roaming the house unattended chewing on power cables…

The bad news was that Alex had been admitted to the ward again, the dehydration caused by his vomiting was concerning the doctors. Add to that, the RSV virus that he’s been suffering for about 10 days has a nasty cough that’s not helping the situation caused by post nasal drip. Finally they’re concerned that he’s not eating yet (nearly a week since he last ate anything) and has had very little to drink, and what he did drink probably half of it came back out. I was still suffering a bit from the migraine so I accepted my fate for the next few nights and went back to bed for another couple of hours.

Finally managing to emerge late afternoon, I found myself needing to get my day underway at 4 pm and quickly so I showered, shaved, packed a few things up and took off for the hospital. Once I caught up with Jo in the ward I found Alex fast asleep on Jo and still not in the room that was to be our permanent home for the next few days at least. Our usual suite…

Once we settled in for the night Alex had his fluids set up, settled in for the night we had ANOTHER unwelcome surprise, his temperature spiked. So… In came the night cover doctor, our usual night doctor. A lovely girl named Cat who was happy to see us again but sad to see Alex in such a state again. The antibiotics that were prescribed had the wonderful effect of giving the poor little man the runs which, as anyone knows; doesn’t help with the dehydration that he was already suffering.

Nearly 2 days of unpredictable and way too frequent accidents, very little sleep in small blocks (reminding me of the early days of Alex as a baby when we had trouble getting him to sleep) we got some relief from the issues by getting the doctors to change the antibiotics which hopefully will reduce the gastrointestinal issues as well as putting Alex on a Fentanyl drip to keep him relaxed and pain free.

So after 3 days with very little sleep, a lot of stress for me, distress for Alex and just overall a lot of hard work (both mentally and physically) things are looking a lot more stable now. The final frustrations that we’re facing right now is Jenny is now crook with the same virus that Alex is on the tail end of and despite the fact that we’re 10 days on from the actual MRI, we’ve not seen the results yet.

We know he’s in the best place for him to be right now, we know he will get better and get over this but it’s really hard to deal with seeing Alex so flat, run down and frankly he’s miserable. The pain relief seems to be doing a great job for him, he’s been a lot more relaxed today than the previous 36 hours which is great news.

Through all of this, the support we’ve had from our family and friends has been unwavering. I really want to thank both Jo’s and my Mum for the help that has been there in looking after Alex for large chunks of time so that both I and Jo can get out of the hospital and get some things done (like go to work!). I want to again, thank my employers for their understanding and allowing me the amount of flexibility they have in dealing with this nightmare. I also want to thank all of our family and friends that continue to SMS, email and message us on the internet (Facebook, MSN etc) with messages of love and support – you guys are helping us stay strong.

Thank you all so much, right now you mean the world to us!