This is just cruel…

Delays keep happening!

Initially due to start on the 13th of March, round 3 of Chemo was delayed due to the infection mentioned in my last post. Basically the issue was that one of his chemo drugs and the antibiotic used to treat the infection react really badly with each other, so that put us off by 9 days to Friday the 22nds. Or, until we went in on the 22nd to find out that we were going to be delayed again, but only by 1 day this time to start on the 23rd.

This time the delay was due to the hearing damage that has been caused by one of the drugs that Alex is on, Cisplatin being the offender. Frankly, this is a complete shit of a drug! I can cause many side effects including

• Hearing damage
• Impairment of Kidney function
• Nausea
• Vomiting
• Constipation

and is necessary to combat the type of tumor that Alex has.

I can’t describe how cruel this feels, he’s 3: Has a brain tumour, which cut off his vision, going through Chemotherapy, which has damaged his hearing in the process? SERIOUSLY!?

There is every indication that the damage is permanent, yes it sucks!
On the bright side, it’s only the high register (4000hz and up) that has suffered damage. So, for those of you who are not inclined that way… it shouldn’t affect his day to day life as the damage is outside of the normal speech range of sound aise from “F” and “ch” sounds which as long as the person he is speaking to is not whispering, he should still hear as he is not “deaf” in that range rather has a hearing impairment which basically means he can’t hear low volumes in that sound range.

Good news in the delay!

Apart from annoyance at not getting started on round 3 of Alex’ chemo, we got some other news: Good news!
His blood levels, specifically:

• White Cells
• Neutrophils

and

• Platelets

were all really good, so good in fact that the Doctors at the hospital said it would be perfectly safe for us to take Alex out to an important family gathering at the Walkers Arms for Mum’s cousin’s 50th Birthday. So despite being there for it, I’ll take another quick opportunity to say Happy Birthday to Sue! We really hope you had a fantastic night and we really were thrilled to be able to make it on the night for a while. It was great to see the family and have a bit of a catch up.

While there’s a massive amount of positive energy, phone calls, messages of support and love coming in…
It still feels quite isolated with a child going through chemo, if his levels are low we can’t risk going out as we’ll end up with him sick and hospitalised again. It’s frustrating and it’s lonely at times but it’s only for a short time (grand scheme) and once this is finished and the dust has settled there’s going to be one hell of a celebration that its over!

Our Little Hero becomes an inspiration

Something that we weren’t able to talk about until the story came out in the Advertiser was the “Alex’ Playground” project that the Little Heroes Foundation launched after a discussion with Jo one afternoon. What was initially just a “did you know” type conversation with one of their staff fast became a snowball project that led to News Limited publishing articles online with Adelaide Now, in the Adelaide Advertiser also in the Sun Herald online.

While there’s still some details that we’re not 100% clear on, the short story is that from the conversation with Jo sprouted the idea of providing seriously ill kids with play equipment for their homes due to the extremely high risk of infection from other children at public playgrounds. With a heavily compromised immune system a chemotherapy patient simply needs to touch a piece of equipment that another child with a runny nose has touched recently to become ill, they don’t even need to come into physical contact with them. Alex’s play equipment that was his Christmas present has been a great source of play and happiness for him, and us since his initial surgery so it’s very exciting for us to know that our journey and some advice will benefit other families following us down this road.

While I don’t have a perfect scan of the Advertiser article I did manage to get a decent capture:

Take 3, Chemo round 3

Two false starts and we’re FINALLY off with round 3 of Chemo and I’m really pleased to say that it was quite uneventful and have very little to report from it. The little champ handled the treatment extremely well, got on with the important things in life (playing noisy games) and we went home pretty much bang on schedule!

As part of Alex’s chemo protocol, he has one of the drugs given on day 1, 8 and 15 so that meant that we had to head into hospital (only for an hour or so) on Easter weekend on the saturday morning. we had to head into the hospital for about an hour (in theory at least) for a quick treatment and some routine blood tests. The routine blood tests showed that Alex was Febrile Neutropenic again: Febrile Neutropenia which means that he has zero Neutrophils, Zero White Cells and in this case he had low Platelets and low Hemoglobin.

So he was lethargic due to his hemoglobin levels, bruised easily due to his low platelets and at extremely high risk of infection due to the neutrophils and white cell counts, in fact so high that both rounds of chemo prior to this when he’s been Neutropenic we have ended up in hospital for about a week with an infection. After his treatment we went home and had a bit of chill out time in the afternoon and settled him for bed in the evening. Sunday morning was pretty quiet and we had the pleasure of Jo’s folks company on Sunday afternoon, it wasn’t until bed time it all went pear shaped.

Honey, grab the thermometer!

As Jo was putting Alex to bed I hear her call out “Honey, grab the thermometer” so I did, and dialed through to the Michael Rice ward to talk to one of the nurses. A temperature of 38.5c while Neutropenic is a bad thing – simple as that! So we packed up and were hospital bound again, unplanned and in a tad of a hurry. Admission after hours is via emergency who had been notified to expect us and were somewhat prepared. The access procedure left a lot to be desired this time around (as it did the last time we went in via emergency) but unfortunately that’s par for the course, they don’t do it every day and don’t have the experience levels that the nursing staff on the chemo ward do so being brutally honest it was slow, clumsy and way harder than it needed to be. I don’t blame the nurse in question, I blame the system! But that’s a story for another day.

So here we are, day 4 in hospital with his third infection after 3 rounds of chemo. Currently no end in sight as his blood levels are yet to show any signs of recovery to normality. He’s still on 8 hourly antibiotics and fluids are being pumped into him at a fairly rapid rate to ensure his blood pressure remains at an acceptable level, with all that in mind he’s still (for the most part) happy and playing through the day with a few brief rest stops along the way. Not only is Alex my little hero, he’s a little trooper too.

I know I’ve put this in pretty much every post since Alex’ diagnosis but I really feel as though I need to reiterate, if you message Jo or I in some form and don’t get a reply please don’t be offended! We are reading all the messages that come in, it’s simply that we’re overwhelmed some days with the love and support we’re receiving. It means so much to us right now to have the abundance of support that we do and it’s our family, friends and various assorted other loved one’s and hangers on out there that are helping us to stay as strong as we are. So again I want to close this post by saying thank you!