The intensive treatment has started

Dear Jack

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

A busy week

Dear Jack

So much has happened over the last few days...

Our SuperJack's team participated in the Relay for Life last weekend and raised well over $5,500 for the Cancer Council. Our team 'baton' was the beautiful SuperJack cape Kylie made. It was a fantastic weekend and I was very sad that you weren't there. I walked the 'survivors and carers lap' with tears in my eyes. On Sunday morning, when the survivors did the 'Hi 5' reverse lap and I was giving dozens of cancer survivors a big Hi 5, I had visions of you walking that lap next year.

At the time of the event, you were in hospital for your first chemo, but I took you to the athletic track on Sunday afternoon to walk our own symbolic lap with your SuperJack cape on. I carried you on my shoulders because you were too tired to walk. I told you to have a good look around because next year you're going to be our team captain.

On Tuesday you had chemo again. This time they gave you asparaginase. You got an anaphylactic reaction to it and needed adrenaline to stabilise you. Pretty scary. We ended up staying at the hospital until 9.30pm (instead of 5pm) because they had to keep you under observation.

The problem is now that they can't give you that drug again and need to figure out an alternative. Karen told us they're discussing it with specialists in Europe. You may now need this drug in a different form and administered every two days instead of fortnightly. Many additional trips to Randwick...

Whilst I was in hospital with you, I texted a few friends to vent about our rough day. Sarah (Ella's mum) and Wayne (Ben's dad) jumped in their car at 9pm and drove over to our house to clean up the entire place, do the dishes, laundry, etc., so I could come home to a clean place. We are so lucky to have such good friends, Jack. I don't know what I would do without my friends at the moment.
In Belgium too we have lots of people who are trying to help. Some of my friends have even organised a party to raise money so I can afford to pay for help every once in a while. Since they live too far to come and help us, they thought it was the best alternative. How nice is that!

Big day on Wednesday, as oma finally arrived from Belgium! You were very excited about her coming.

On Thursday we had a clinic appointment to discuss the events of last Tuesday.

On Friday you had another bone marrow aspirate (the 5th one!) and lumbar puncture. You are so good with these things! You've completely stopped crying for your blood tests and you don't think anything of the surgery (you're entirely focussed on the after-surgery chips and pie :-) ). I still get teary each time you're being put to sleep in the operating theater.

After the surgery (and chips and pie) we went to the Starlight Express Room where you played Mario for more than an hour. You got a prize for being the fastest racer ever and couldn't believe your luck.

Today you went to Randwick with dad for another round of chemo. I spoke to you this afternoon and you seemed totally fine. Unfortunately, Emily and Maya are both sick so you can't come home today. You'll be staying with dad for the next couple of days.

You're doing extremely well, SuperJack, and I'm very proud of you.

Love you lots

Mammie

Finally a diagnosis

Dear Jack

It's been a while since I've updated my blog because things have been very hectic.

On Thursday the 26th you went back to school for the first time in six weeks. Unlike you ;-), your class mates were very excited. You made me promise to pick you up at recess. Just as I was ready to come and get you, I got a phone call from a fellow at the hospital who said you needed another bone marrow aspirate and a lumbar puncture on Friday. Another bone marrow aspirate! I couldn't believe it. The fellow couldn't tell me why so I requested a phone call from Prof. Marshall. That phone call came when I got out of the car to drop Maya's medicine off at childcare. The news came as a big surprise: they had a diagnosis. Your third bone marrow aspirate had shown leukemia cells and Prof. Marshall could tell me without any doubt that you have ALL, the most common form of leukemia in kids. I wasn't sure if I was supposed to be happy or sad. Over the last few weeks, we've gone from "an infection, leukemia or aplastic anemia" to "definitely not an infection and not aplastic anemia" to "definitely not leukemia" to "myelofibrosis" to "probably secondary myelofribrosis so what's the primary disease?" to "aplastic anemia or an aggressive type of leukemia so we'll start preparing for a bone marrow transplant" to "let's either put you on medication for aplastic anemia or do nothing and see what happens" to "we've got a clear diagnosis of acute lymphoblastic leukemia". What a rollercoaster!

Now that I know you'll be getting treatment soon, I've been trying to squeeze in as many nice activities as possible.

Last Friday we had to be at the hospital at 7am, so we stayed overnight at Stirling's house. That was very nice for both of us.
The blood test in the morning went quite well. At 8am we had an appointment with Prof. Marshall who went through the treatment plan. Then it was off to surgery. In recovery, you took the opportunity to have a 2-hour nap whilst a nurse and I were sitting beside you. When you finally woke up. you got your first dose of steroids. Hm, I was warned for 'mood swings' as a side effect. That was the understatement of the year. I left the hospital a few hours later (after the 'after-surgery chips and pie') with a little boy screaming through the hospital "I WANT AN iPAD NOW!". That went on the whole way home. Eventually, I promised you a $10 toy from K-mart, which you accepted (phew!). The 'quick dash' to K-mart took forever as there were not a whole lot of $10 toys you were interested in.

We got home around 5pm and dad brought the girls back. Your tantrums continued throughout the evening and by the end of the day I was almost in tears.

On Saturday three ladies from our neighbours' church came to help me out a bit. One of them made caleidoscopes with Emily and you, which you took to Lana and Wills engagement party at Como Pleasure Grounds. After we spent a couple of hours at the party, you demanded a swim at Sutherland pool, so I called Fiona and half an hour later we had made it from the playground to the pool. Anything to stop the tantrums!

On Sunday my friend Kara, who you and Emily adore, came over to play with you. She brought Daisy, which was very exciting. In the afternoon, dad picked you up to take you fishing for a couple of hours.

The following day you and I went to the movies and had sushi afterwards. All stuff I can't afford, but I'll worry about that later. In the afternoon, we had to pick up Emily from childcare because of... nits! Just what I needed!

On Tuesday we had another oncology appointment where they went through all the side effects of the medication. For the first time since all of this started, I got a bit distressed on the way home. This is serious stuff. And everyone talks about the great prognosis but few people seem to realise what you have to go through to get to that great result.

On Wednesday, just as I thought I'd be able to work a couple of hours, I had to drive to Randwick Hospital with Maya because she was showing signs of chicken pocks, which would be dangerous for you and all other kids at oncology, so she had to be checked (couldn't be done at Sutherland Hospital, sigh!). 

Today you had your central line implanted under general anaesthetics and got your first chemo. Dad is in hospital with you and I'm at home with he girls.

So many people called and texted me today to wish you well. You've got a whole lot of people thinking of you, my dear Jack. Even Mrs. Basford from Como West called today.

Tomorrow the girls and I will be going to the Relay for Life, the charity event I've been talking about for months. Our team of 21 is called SuperJack's team and has already raised $4,150 for the Cancer Council. We'll be selling cupcakes, biscuits, cards, muffins etc. to raise even more tomorrow. The team mascot is a SuperJack cape. I think it's going to be a lot of fun. I had really hoped you'd be able to come along for a few hours but I don't think that'll be possible. In any case, there will be 21 people thinking of you a hoping you'll get better soon.

Lots of love
Mum