So after getting through his first round of Chemotherapy at the end of January Alex was doing really well physically. We got home, got acclimatized to home life again and were pretty happy with the way things were travelling. Due for stem cell harvest on Monday the 4th of February we went in on the Sunday for a couple of routine blood tests and to get Alex comfy in his room for a night before the procedure. Unfortunately… about 15 minutes after we got there, his temperature started spiking uncontrollably. Hmm, he feels a bit warm I thought, as Alex settled down for an afternoon Nap. He woke up rather abruptly a short time later very upset, no apparent reason why! 36.6c, 38.6c to 39.6 only a few minutes later, the sense of urgency from the nurses told me that this was more than something to be concerned about: This is serious!
By the time they had accessed his infuser port a few minutes later his temperature had tipped over 40 and the decision had been made to start immediate IV antibiotics. A blood transfusion, 2 lots of platelets and close monitoring for the rest of the afternoon had me a tad wound up and very stressed, I’m convinced he was milking it a bit simply because I jumped up to his bedside anytime he moved. After a tense evening and dreadful nights sleep, more blood tests and hourly obs being taken by the nurses (yes all f**king night!) Alex had settled. He wasn’t happy, he had no energy at all but he was at least calm and sitting relatively happily listening to some Wiggles in his bed.
More blood tests…
It took 3 lots of blood tests and 2 days to confirm that his infuser port line was in fact infected with the bacteria that was making him ill. Oh shit, how do they fix this? Really simple; they just pump Hydrochloric acid into the line and let that sit for 10 minutes, draw it back out – rinse and repeat another time. What could go wrong? The other end of the line is at least a few millimeters clear of the aorta of his heart! What’s the other options? Another surgery to replace the port, with no guarantee that the new port won’t have bacteria in it already… GREAT!
24 hours further down the track, acid flush complete, 3 more doses each of 2 different antibiotics his temperature had settled into the mid – high 37 range which meant the doctors were a lot less concerned and “reasonably confident” (comforting to hear…) that the port line had been cleansed of the bacteria. That’s great news right? If the bacteria is gone and his temperature is down we’ll be heading home soon!
More blood tests…
Excellent, the latest blood tests and cultures are all looking good. Some of his levels, specifically the Neutrophils and white cell count were extremely low which meant he had to stay until they recovered to a level that the Oncology consultants were happy with. The initial indications were that this would probably take somewhere between 4 and 7 days from now, good-o a 6 – 9 day stay is on the cards so we should get comfy. My Mum and Dad are off the visitors list for a few days at least as they’ve been out with some friends who are sporting head colds, so we’re on phone contact only with them at the moment too.
Somewhat of a routine followed for the next 3 days. Breakfast, play, lunch, visitors & play, Dinner, Mamma and Jenny visiting then bed. Interspersed with the odd blood test, fluids, antibiotics and visits from various Doctors and nurses (not all of whom are actually involved with his care, they just love him because he’s so awesome!). After about 48 hours of the antibiotics he had been steadily and noticeably picking up by the day, at one stage hour by hour. I can tell when he’s feeling good because he wears me out but my goodness it was SO GOOD to see him leaping around like a mad thing after Sunday’s scare.
We’re going HOME!!
After 8 days in hospital, a hell of a scare and no stem cell harvest – we went home! Not the way I planned to spend a week, but right now the little man is the main priority that’s for sure. He’s got to be and I’ve told a number of people: There’s a long road ahead of us as a family, I’ll be walking every step of the way with Alex and when he needs it I’ll pick him up and carry him! We got home, had some rest and some play. We’ve had a couple of really good nights and a couple of really bad nights, but we’re getting there.
More blood tests…
A planned, routine trip to hospital this time! Valentines day, I had to take him back in for some appointments – The first was a routine follow up blood test to make sure that the nasty bacteria that was growing in his port line had not returned, the second a planned follow up with Ophthalmology checking if there’s any change with his vision: there was not. The plan was to take him into the Oncology clinic, access -> draw blood -> de access -> Ophthalmology -> back to clinic to check no issues -> home.
When we got back to the clinic to check everything was ok, one of the nurses came out with some numbing cream saying “Sorry, we have to access him again his Hemoglobin is really low. We need to do a blood transfusion ASAP”. Knowing this meant at least 3 hours in the clinic, I started making phone calls: Work – I’m not coming in today, Home – Here we go again and some messages to family to let them know what was going on. Despite being ultra pissed that he had to be accessed twice in a day, once that was done and the transfusion started Alex chilled out. Wiggles, Shaun the Sheep and his friend Chelsea (the play therapist at the clinic) helped this mood greatly. About 3:45 we got home in the afternoon, wow that was a long day given I really only planned to be out for 2 hours or so.
The good news is that the transfusion will put him in a really good position for at least a week with his levels, meaning that when we go back to hospital next Wednesday for round 2 of Chemo we should be good to go without delay. Unless something untoward happens in the meantime we’re hoping for a quiet weekend at home and an uneventful start to the week too. I’ve manage to get back to work and we’re restoring some semblance of normality to life where we can at the moment and it feels great.
That whirlwind is why my weekly blog posts haven’t happened for the last 2 weeks. Apologies for the delay but as you can now see I’ve been a bit tied up with just a couple of things on my mind.
Speaking of on my mind: Firstly I need to once again publicly thank my employers for their amazing “Look after your family” attitude, without their support this whole situation would be much more stressful than it already is and I can’t thank them enough for their support and care they’ve already shown. I’ve had phone calls from both of the directors staggered through the surgery, recovery and chemo checking in to see how everyone is coping. It’s more than I could ever ask of them and I’m eternally grateful for their approach to this.
The Little Heroes Foundation have continued to make regular contact with us and have been offering support to us as we need it. Please – If you’ve got a few dollars to spare, grab your credit card and donate a few dollars HERE
Finally, thanks again to anyone and everyone who has called, text messaged, facebook messaged (or wall posts), emailed, tweeted or in any other way contributed to ensuring that we’re coping as well as could be expected with this whole situation. Your love, positive energy and support is a great source of strength to us and we really appreciate it.