Another busy fortnight has gone by...
There’s been some very good news: based on some additional tests and your initial responses to the treatment, you have now been confirmed as a standard-risk patient. Only 15% of kids with ALL are put in this category; the others go into the medium- or high-risk category. You can imagine how relieved we were with this news. 
The less positive news has been that the alternative for the intravenous chemo you’re allergic to is a series of seven very painful injections with that same drug but in a different form. These injections combined with the usual hospital visits mean we’re in Randwick almost every day now. The first time you had one of the injections, they had the resuscitation team and Intensive Care Unit on standby in case you had another allergic reaction. Luckily, that didn’t happen.
As a result of the steroids, you’ve put on a massive amount of weight; you went from 20 kg to 23 kg in the first week and are now weighing 25 kg. Your appetite is astounding. You want food every minute of the day and are very particular about what you want: chips and pie, fish and chips, prawn dumplings from a particular sushi place in Randwick, fried prawn cutlets from Jannali, spaghetti marinara, bouillabaisse... And it all has to come immediately or else... we get the world’s biggest tantrums . It’s driving me crazy! Last Tuesday you had a big bowl of spaghetti marinara, followed by four party pies and a sausage roll, and whilst you were eating that you asked me what you could have for dessert. After your dessert, you had two bags of chips and when you’d finished those, I had to text the neighbours to ask if anyone had any savoury snacks as the shops had closed by then. Within minutes, Donna and Paris were at the front door, and whilst we were picking up more crackers from Kate Maree, Linda dropped off several snacks. I find it difficult to give in to your constant demands for unhealthy food but the doctors and nurses say that I should just give you whatever you want. Apparently, some parents have to get up in the middle of the night to cook a big meal for their hungry child. I’m glad oma is here to back me up because people wouldn’t believe me if I told them what you eat in a day. J. If only they knew... But do you care? I don’t think so, because this morning you looked in the mirror and said: “Mum, I look really cute now, don’t I?”
You certainly have the ‘leukemia look’ now: a very round face with chubby cheeks and a very big tummy. I’ve noticed a few judgemental head shakes and eye rolls from people on the street when you’re shoving an unhealthy snack into your chubby face.
Otherwise, you’re doing really well. You’re not sick from the medication and you never complain about having to go to hospital. You’ve become very good with the needles and you’ve told me you actually like the ‘rocket fuel’ gas they use to put you to sleep for your bone marrow aspirates and lumbar punctures. I asked you this morning where that little boy had gone that used to scream for every needle. Your response: “He left the hospital and went out of town, mum. He was a whooz; he wasn’t the real SuperJack.”
The treatment is becoming very intense though and we’re starting to get pretty tired. Last Tuesday we wasted almost an entire day at the hospital because no one had noticed your low blood levels the day before and Prof. Marshall decided mid-morning that they were too low to go ahead with your bone marrow aspirate and lumbar puncture. Just what we needed... a trip to Randwick in peak hour traffic and three hours at the hospital for nothing. With the girls in childcare, I could have worked for the first time in two weeks! Yesterday we ended up at the Emergency Department at 2.00 am because your legs were so sore you couldn’t sleep (apparently a side effect of the chemo). We stayed at ED until 9am, when it was time for your usual clinic appointment and injection on C2 North. We left the hospital in the afternoon. Today we’re here again for a bone marrow aspirate and lumbar puncture, tomorrow there will be an entire day of chemo, Saturday an injection at Kareena and Sunday two injections at Randwick again. A pretty busy schedule for all of us...
There’s not a lot of down time, but we did manage to have a video call with your class last Tuesday. It was great to see all your class mates in front of the screen. They told you they’ve started a communication book to exchange stories and photos with you and they’re very excited to see the monkey that’s going to sit in your chair while you’re away.
Some of the mothers from your school have put their heads together to come up with a few ways to help us. They’re organising fundraisers and are setting up rosters to help with practical things such as meals and homework. They’re all wonderful people and we’re very lucky to know them.
Last week we came home from an exhausting day at the hospital to find the house absolutely spotless, food in the fridge, a large basket of fruit and veggies on the table, chocolate and champagne next to it... Kayla and her mum had paid us a surprise visit. Maybe it’s not a bad thing that half the Shire knows ‘the secret’ location of my spare keys ;).
You get lots of cards, emails and parcels from Belgium and interstate. It’s quite challenging to give the girls their share of attention amid all of this, particularly because I need to work a bit whenever I’m not at the hospital. Having oma here makes it a whole lot easier in the sense that she does all the house work for me (and a lot more) but the girls really want me around for some quality time.
Today is day 35 of your treatment. Five to seven more months to go before you get to the ‘maintenance’ stage. We’ve already started a list of things to do when you’re better; so far it includes a trip to Belgium, Yum Cha with the whole family, have lots of seafood at your birthday party, go fishing, go camping and get Leo (our rabbit) back from our neighbours.
Off to theatre now for another BMA and LP... Sleep tight, buddy.
Mum xxx
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