Good morning, Jack!
A whole night without fevers and without a drip!! No IV fluids meant no multiple wees during the night (no sheet changes) and no beeping machine. No fevers meant no nurses coming in to check every hour and no beeping monitor on your toe. It meant... SLEEP for both of us! But will it also mean we're going home today??? Too bad the doctors only come around in the afternoon on the weekend so if we do get discharged, it will only be in the late afternoon. And the doctors who cover for other doctors on the weekend tend not to 'take any chances', so we'll still have to see...
Love
Mum
Sunday 17 June 2012
Saturday 16 June 2012
Sigh...
Sigh... we're still here, hey Jackyboy... Twelve days in isolation...
Oma has gone back to Belgium. We've hardly seen her while she was here. She was looking after the girls all by herself during the last week of her stay and even managed to make Maya sleep through the night.
In the meantime your temperature keeps going up and down like a yoyo. Prof. marshall says you're going to be here for a few more weeks. I've got the feeling though that you're out of the woods and we're going to be out of here by tomorrow afternoon. Let's see who'll be right, Prof or mum. In any case, if we manage to get out of here tomorrow, it won't be for long because the new round of Ara C injections starts on Monday and it's very likely that we'll find ourselves at Emergency with a fever on Monday night.
You're doing very well, buddy.
Mum
Oma has gone back to Belgium. We've hardly seen her while she was here. She was looking after the girls all by herself during the last week of her stay and even managed to make Maya sleep through the night.
In the meantime your temperature keeps going up and down like a yoyo. Prof. marshall says you're going to be here for a few more weeks. I've got the feeling though that you're out of the woods and we're going to be out of here by tomorrow afternoon. Let's see who'll be right, Prof or mum. In any case, if we manage to get out of here tomorrow, it won't be for long because the new round of Ara C injections starts on Monday and it's very likely that we'll find ourselves at Emergency with a fever on Monday night.
You're doing very well, buddy.
Mum
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| A present from the Como West staff: a 3DS |
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| Finally together again after two weeks! |
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| Peek-a-boo, Maya! |
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| Three little monkeys |
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| The smelly clown |
Friday 8 June 2012
In isolation
Hi Jackypants
Fifth day in hospital and you're getting extremely bored... You were moved into an isolation room because you've got the flu. The good thing about it is that we have a very large room (with bathroom!) to ourselves. The bad thing is that you can't leave your room to go to the Starlight Express Room.
We made a tyrannosaurus yesterday morning and I drew a big one on the whiteboard (following your very specific instructions). Then we played a few games on dad's iPad, watched some TV and just lay around. The Starlight Express Room gave us two boxes of Lego. This morning, Captain Starlight came to your room to show you some magic tricks. He made you a giant magic wand from balloons.
Because you didn't like your lunch yesterday, I ran to Coles to get you a frozen pizza and garlic bread. I tried to sneak into the kitchen of another ward as there is no oven on C3West. Hum, that didn't go according to plan... The oven started smoking so everyone got very worried about smoke alarms going off, which would have triggered a charge-out from the fire brigade and a $1,000 bill to the hospital. I spent 15 minutes in the kitchen - under the hovering eyes of several nurses - trying to cool the oven without making more smoke. So much for sneaking in...
Luckily, there was some action of a different kind in the afternoon: a surprise visit from Stirling and two video calls: first with Ben, Ella, Emily, Molly, William and Sarah, and then with James, Emily and Kate. That was a lot of fun!
Oma is at home with Emily and Maya. I hope the girls aren't giving her a hard time because both of them can be a hand full sometimes. It's a good thing oma has lots of energy and can juggle a million things.We don't know what we'd do without her.
SuperJack's Sidekicks, a group of mums from Como West, have been working very hard on a Facebook and MyCause page for you. They'll go live today, which is super exciting!
You're having a very big sleep at the moment. I bet you don't even know I went out to the shops to get you some dinosaur tattoos!
Big kiss
Mum
Fifth day in hospital and you're getting extremely bored... You were moved into an isolation room because you've got the flu. The good thing about it is that we have a very large room (with bathroom!) to ourselves. The bad thing is that you can't leave your room to go to the Starlight Express Room.
We made a tyrannosaurus yesterday morning and I drew a big one on the whiteboard (following your very specific instructions). Then we played a few games on dad's iPad, watched some TV and just lay around. The Starlight Express Room gave us two boxes of Lego. This morning, Captain Starlight came to your room to show you some magic tricks. He made you a giant magic wand from balloons.
Because you didn't like your lunch yesterday, I ran to Coles to get you a frozen pizza and garlic bread. I tried to sneak into the kitchen of another ward as there is no oven on C3West. Hum, that didn't go according to plan... The oven started smoking so everyone got very worried about smoke alarms going off, which would have triggered a charge-out from the fire brigade and a $1,000 bill to the hospital. I spent 15 minutes in the kitchen - under the hovering eyes of several nurses - trying to cool the oven without making more smoke. So much for sneaking in...
Luckily, there was some action of a different kind in the afternoon: a surprise visit from Stirling and two video calls: first with Ben, Ella, Emily, Molly, William and Sarah, and then with James, Emily and Kate. That was a lot of fun!
Oma is at home with Emily and Maya. I hope the girls aren't giving her a hard time because both of them can be a hand full sometimes. It's a good thing oma has lots of energy and can juggle a million things.We don't know what we'd do without her.
SuperJack's Sidekicks, a group of mums from Como West, have been working very hard on a Facebook and MyCause page for you. They'll go live today, which is super exciting!
You're having a very big sleep at the moment. I bet you don't even know I went out to the shops to get you some dinosaur tattoos!
Big kiss
Mum
Tuesday 5 June 2012
A surprise holiday
Dear Jack
A surprise holiday on C2West today... Just as we were ready to leave the hospital after a whole day of chemo (no further hospital bookings for the rest of the week, woohoo!), they took your temperature as part of the discharge procedure... and that's where the plans changed... Your temperature was 38C so you were immediately admitted to hospital for a 48-hour stay with intravenous antibiotics. And of course, this morning I took the overnight bag out of the car to put some bigger clothes in for you, so we're here without any clothes, toothbrushes, pyjamas... And to make matters worse, I forgot my wallet at home so I can't buy anything. The $60 Aunty Ky lend me this morning have gone mostly to medication so I've got about $10 left for the night. Thank goodness your appetite has gone down since you've stopped taking the steroids!
Even though your fever is a side effect from the chemo you got today and all patients develop a fever after getting this particular drug, they have to treat every rise in temperature as suspicious and give antibiotics as a precaution. They take blood cultures and watch them for 48 hours -- if there are no signs of infection, you can come off the antibiotics and go home. Very frustrating! This is the second time you've been put on antibiotics where the fever was clearly a side effect from medication, but they're adamant they can't take any chances.
You will be getting this same chemo 4 days per week for the next month, so I think we'd better prepare for a month in hospital.
It's all good though; earlier tonight, when we snuggled up against each other in the hospital bed and you had your arm wrapped around me, you said "Mum, this is one of the best nights of my life"! Well Jack, if that's true, it is for me too.
Love
Mum
A surprise holiday on C2West today... Just as we were ready to leave the hospital after a whole day of chemo (no further hospital bookings for the rest of the week, woohoo!), they took your temperature as part of the discharge procedure... and that's where the plans changed... Your temperature was 38C so you were immediately admitted to hospital for a 48-hour stay with intravenous antibiotics. And of course, this morning I took the overnight bag out of the car to put some bigger clothes in for you, so we're here without any clothes, toothbrushes, pyjamas... And to make matters worse, I forgot my wallet at home so I can't buy anything. The $60 Aunty Ky lend me this morning have gone mostly to medication so I've got about $10 left for the night. Thank goodness your appetite has gone down since you've stopped taking the steroids!
Even though your fever is a side effect from the chemo you got today and all patients develop a fever after getting this particular drug, they have to treat every rise in temperature as suspicious and give antibiotics as a precaution. They take blood cultures and watch them for 48 hours -- if there are no signs of infection, you can come off the antibiotics and go home. Very frustrating! This is the second time you've been put on antibiotics where the fever was clearly a side effect from medication, but they're adamant they can't take any chances.
You will be getting this same chemo 4 days per week for the next month, so I think we'd better prepare for a month in hospital.
It's all good though; earlier tonight, when we snuggled up against each other in the hospital bed and you had your arm wrapped around me, you said "Mum, this is one of the best nights of my life"! Well Jack, if that's true, it is for me too.
Love
Mum
Thursday 31 May 2012
The intensive treatment has started
Dear Jack
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.
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
Saturday 12 May 2012
A busy week
Dear Jack
So much has happened over the last few days...
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 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.
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.
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
MammieFriday 4 May 2012
Finally a diagnosis
Dear Jack
It's been a while since I've updated my blog because things have been very hectic.
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.
Lots of love
Mum
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.
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
Wednesday 25 April 2012
Another day in hospital
Dear SuperJack
Last Friday you had another blood transfusion which made you feel better again. Yesterday you went to hospital for another bone marrow aspirate. We stayed at Aunty Ky's house the night before because we had to be in hospital early for a blood test and appointment with Prof. Marshall.
You did pretty well at your blood test. We had time to walk up to the news agency in Randwick to pick up some footie cards as a reward for your braveness and arrived at oncology around 10am. Because you had woken up with a sniffly nose, they decided to keep you in isolation. That sounds a lot worse than it is because it means you get a private room :-). Unfortunately, it also meant that they had to put you last on the list for the bone marrow aspirate because they didn't want you to spread your germs in the operating room. (As if the airconditioning in the hospital wouldn't do that!) They also had to suck some mucus out of the back of your nose to analyse it and make sure you didn't have a bacterial infection. It looked very uncomfortable to me but you were again very brave.
Prof. Marshall came in (dad had also arrived for that meeting) and said he was baffled with your blood results, as your platelet count had gone up! Whilst last week he was talking about a bone marrow transplant and getting Maya and Emily tested to see if they were suitable donors, he now suggested we may just put you on the drugs for aplastic anemia, or maybe even do nothing and see what happens over the next few weeks! What an unexpected change! I now have a glimmer of hope that things are not that bad. The results of the bone marrow puncture will hopefully tell us more. In any case, you have the hematology and oncology team at the hospital very puzzled and intrigued!
Around 4.15pm you were finally wheeled into theatre. I stayed with you until you were asleep and then went to see Charlie and Maryanne who had just arrived to say hello. I also ran downstairs to get you the usual 'after-surgery chips and pie', because you hadn't eaten since 7am.
Unlike the first two times, you woke up crying and nauseous. Luckily, it didn't take long before you felt better and could eat your food, talk a bit to Charlie and look at all the presents he had brought for you. Around 6pm we all left the hospital. Peak hour traffic on the way home, damn! You fell asleep in the car so I transferred you to your bed in your clothes.
Luckily you woke up without much pain from the procedure. Dad picked you up at 9am.
Tomorrow, you'll be going back to school for the first time in almost 6 weeks. Very exciting! Unfortunately, the school policy doesn't allow teachers to take your temperature (whilst fevers can be so dangerous for you) so they'll just call us if they suspect a temperature. Grrrr, risk management gone out of control! (The other day I was told at Maya's childcare centre that they couldn't use the nappy rash cream I had put in her bag because it didn't have the pharmacy label with instructions on it. For God's sake, you just buy that cream at the supermarket!) I think I'm going to teach you to use and read a thermometer so you can check your temperature yourself whenever you don't feel well.
I'm very proud of you for being so brave yesterday. It was a long and difficult day but you did really well.
Let's hope your blood counts will keep improving and we'll soon have our healthy Jack back.
Love
Mum
Last Friday you had another blood transfusion which made you feel better again. Yesterday you went to hospital for another bone marrow aspirate. We stayed at Aunty Ky's house the night before because we had to be in hospital early for a blood test and appointment with Prof. Marshall.
You did pretty well at your blood test. We had time to walk up to the news agency in Randwick to pick up some footie cards as a reward for your braveness and arrived at oncology around 10am. Because you had woken up with a sniffly nose, they decided to keep you in isolation. That sounds a lot worse than it is because it means you get a private room :-). Unfortunately, it also meant that they had to put you last on the list for the bone marrow aspirate because they didn't want you to spread your germs in the operating room. (As if the airconditioning in the hospital wouldn't do that!) They also had to suck some mucus out of the back of your nose to analyse it and make sure you didn't have a bacterial infection. It looked very uncomfortable to me but you were again very brave.
Prof. Marshall came in (dad had also arrived for that meeting) and said he was baffled with your blood results, as your platelet count had gone up! Whilst last week he was talking about a bone marrow transplant and getting Maya and Emily tested to see if they were suitable donors, he now suggested we may just put you on the drugs for aplastic anemia, or maybe even do nothing and see what happens over the next few weeks! What an unexpected change! I now have a glimmer of hope that things are not that bad. The results of the bone marrow puncture will hopefully tell us more. In any case, you have the hematology and oncology team at the hospital very puzzled and intrigued!
Around 4.15pm you were finally wheeled into theatre. I stayed with you until you were asleep and then went to see Charlie and Maryanne who had just arrived to say hello. I also ran downstairs to get you the usual 'after-surgery chips and pie', because you hadn't eaten since 7am.
Unlike the first two times, you woke up crying and nauseous. Luckily, it didn't take long before you felt better and could eat your food, talk a bit to Charlie and look at all the presents he had brought for you. Around 6pm we all left the hospital. Peak hour traffic on the way home, damn! You fell asleep in the car so I transferred you to your bed in your clothes.
Luckily you woke up without much pain from the procedure. Dad picked you up at 9am.
Tomorrow, you'll be going back to school for the first time in almost 6 weeks. Very exciting! Unfortunately, the school policy doesn't allow teachers to take your temperature (whilst fevers can be so dangerous for you) so they'll just call us if they suspect a temperature. Grrrr, risk management gone out of control! (The other day I was told at Maya's childcare centre that they couldn't use the nappy rash cream I had put in her bag because it didn't have the pharmacy label with instructions on it. For God's sake, you just buy that cream at the supermarket!) I think I'm going to teach you to use and read a thermometer so you can check your temperature yourself whenever you don't feel well.
I'm very proud of you for being so brave yesterday. It was a long and difficult day but you did really well.
Let's hope your blood counts will keep improving and we'll soon have our healthy Jack back.
Love
Mum
Tuesday 17 April 2012
A merry-go-round
Dear Jack
Last week Prof. Marshall wasn't able to give us much news but I've noticed that some of your medical forms are now starting to mention 'myelofibrosis'. I was expecting him to say today that they've formally diagnosed you with this condition. But instead he said you don't really show the typical features of myelofibrosis and, if you do have it, he thinks it's more likely to be a secondary condition. This would mean there is an underlying disease. At this stage I don't really care what it is anymore, I just want someone to tell me: "Ok, we know what it is and this is how we're going to treat it".
They're now doing further tests for genetic mutations and chromosomal abnormalities. Prof. Marshall said it could take weeks or even months before they diagnose you and decide on a treatment plan.
Today, the story got a bit of a twist again. He now mentioned two possibilities he had ruled out a few weeks ago: aplastic anemia and a rare form of leukemia. It sounds a bit like we've gone the full circle.
You'll be having another blood transfusion this Friday and a bone marrow aspirate next Tuesday.
Tonight the girls and you were supposed to stay at dad's but nanny is sick so we decided you'd stay with me so you don't get contaminated.
We had the best night ever! First we played 'Connect 4', then we had our dinner in the living room (which you found very exciting as you're usually not allowed to eat there) and after dinner we showed each other our craziest dance moves and moved around on the floor pretending to be snorkeling. Then we unfolded the couch bed and installed ourselves in front of tv with our doonas. You called it our special movie night and kept saying "nice hey mum, just with the two of us". You certainly milked it for what it was worth: "Mum, since it's just the two of us, I think we can break a few rules and have some more treats." We didn't go to sleep until 10pm.
Now it's 3.00am and you've got a temperature so I have to decide whether or not to take you to the hospital. Jeez, I hate this. We've been told to take you to hospital without delay if your temperature is 38C or more. As soon as you arrive there, they will do a blood test and put you on an antibiotic drip for 48 hours in case you have an infection. But I know the temperature is just from the hormone injection you had this afternoon. You had it last time too and I was quite cranky that they kept you in hospital for two nights and put you on antibiotics. But they're adamant that any infection can be life-threatening for you so they don't want to take the risk. Hm, dilemma, dilemma... For now, I'm just going to do some household work and keep checking your temperature every half hour.
Lots of love
Mum
Last week Prof. Marshall wasn't able to give us much news but I've noticed that some of your medical forms are now starting to mention 'myelofibrosis'. I was expecting him to say today that they've formally diagnosed you with this condition. But instead he said you don't really show the typical features of myelofibrosis and, if you do have it, he thinks it's more likely to be a secondary condition. This would mean there is an underlying disease. At this stage I don't really care what it is anymore, I just want someone to tell me: "Ok, we know what it is and this is how we're going to treat it".
They're now doing further tests for genetic mutations and chromosomal abnormalities. Prof. Marshall said it could take weeks or even months before they diagnose you and decide on a treatment plan.
Today, the story got a bit of a twist again. He now mentioned two possibilities he had ruled out a few weeks ago: aplastic anemia and a rare form of leukemia. It sounds a bit like we've gone the full circle.
You'll be having another blood transfusion this Friday and a bone marrow aspirate next Tuesday.
Tonight the girls and you were supposed to stay at dad's but nanny is sick so we decided you'd stay with me so you don't get contaminated.
We had the best night ever! First we played 'Connect 4', then we had our dinner in the living room (which you found very exciting as you're usually not allowed to eat there) and after dinner we showed each other our craziest dance moves and moved around on the floor pretending to be snorkeling. Then we unfolded the couch bed and installed ourselves in front of tv with our doonas. You called it our special movie night and kept saying "nice hey mum, just with the two of us". You certainly milked it for what it was worth: "Mum, since it's just the two of us, I think we can break a few rules and have some more treats." We didn't go to sleep until 10pm.
Now it's 3.00am and you've got a temperature so I have to decide whether or not to take you to the hospital. Jeez, I hate this. We've been told to take you to hospital without delay if your temperature is 38C or more. As soon as you arrive there, they will do a blood test and put you on an antibiotic drip for 48 hours in case you have an infection. But I know the temperature is just from the hormone injection you had this afternoon. You had it last time too and I was quite cranky that they kept you in hospital for two nights and put you on antibiotics. But they're adamant that any infection can be life-threatening for you so they don't want to take the risk. Hm, dilemma, dilemma... For now, I'm just going to do some household work and keep checking your temperature every half hour.
Lots of love
Mum
Friday 6 April 2012
Back in hospital
Dear Jack
Yesterday afternoon your temperature went over 38 degrees so I took you back to the hospital. I was pretty sure they were going to send us home again but I just wanted to be on the safe side. We spent several hours at the Emergency Department playing games, reading books and building a train track. Unfortunately, they had to do a blood test, put you on an antibiotic drip and keep you overnight.
This time we were taken to a different ward and we had a private room. Fabulous! And probably a good thing too, because once we were in the room I realised I was going to be in the same clothes for at least two days and a night. In my rush to get you to the hospital, I had packed an overnight bag for you with clean clothes, pyjamas, a toothbrush, dvds, books, toys etc. but I hadn't packed a single thing for myself. I've made a mental note to myself to keep an overnight bag in the car from now on.
You had a pretty good night and slept until 10.00am! You then needed another blood test. Your blood tests, cannulas and flushes are becoming more dramatic each time and you beg me to not have them. I pull out all my tricks to distract you, reassure you, comfort you... but they don't seem to work. And before anyone can come near you, you list your requests: a magic patch left on your arm for at least an hour, the butterfly needle for blood tests, a hot pack for afterwards, your arm wrapped in a pillow cover to keep it warm when cold fluids go in, the drip machine set on the lowest speed, the antibiotic drip diluted with lots of water... Luckily, all doctors and nurses go along with it. They're really great.
After lunch we went to the Starlight Express Room, where we played on the Wii for several hours until you had to go back to the room to get your blood transfusion.
Aunty Ky came to visit with Haiden and Jesse. Then dad arrived to take over from me so I could go home, have a shower and be with the girls tonight. You'll have to stay for a second night because they want you on the antibiotics for 48 hours.
I'm sure you're feeling much better since you've had your blood transfusion and I hope you'll have a good night sleep.
Love
Mum
Yesterday afternoon your temperature went over 38 degrees so I took you back to the hospital. I was pretty sure they were going to send us home again but I just wanted to be on the safe side. We spent several hours at the Emergency Department playing games, reading books and building a train track. Unfortunately, they had to do a blood test, put you on an antibiotic drip and keep you overnight.
This time we were taken to a different ward and we had a private room. Fabulous! And probably a good thing too, because once we were in the room I realised I was going to be in the same clothes for at least two days and a night. In my rush to get you to the hospital, I had packed an overnight bag for you with clean clothes, pyjamas, a toothbrush, dvds, books, toys etc. but I hadn't packed a single thing for myself. I've made a mental note to myself to keep an overnight bag in the car from now on.
You had a pretty good night and slept until 10.00am! You then needed another blood test. Your blood tests, cannulas and flushes are becoming more dramatic each time and you beg me to not have them. I pull out all my tricks to distract you, reassure you, comfort you... but they don't seem to work. And before anyone can come near you, you list your requests: a magic patch left on your arm for at least an hour, the butterfly needle for blood tests, a hot pack for afterwards, your arm wrapped in a pillow cover to keep it warm when cold fluids go in, the drip machine set on the lowest speed, the antibiotic drip diluted with lots of water... Luckily, all doctors and nurses go along with it. They're really great.
After lunch we went to the Starlight Express Room, where we played on the Wii for several hours until you had to go back to the room to get your blood transfusion.
Aunty Ky came to visit with Haiden and Jesse. Then dad arrived to take over from me so I could go home, have a shower and be with the girls tonight. You'll have to stay for a second night because they want you on the antibiotics for 48 hours.
I'm sure you're feeling much better since you've had your blood transfusion and I hope you'll have a good night sleep.
Love
Mum
Wednesday 4 April 2012
Easter Hat Parade at Como West
Dear Jack
Today we went to the Easter Hat Parade at your school. Your class mates and Mrs Dale were very excited to see you.
Even though the specialists have said you can go back to school, your school principal doesn't want you to come back until someone from the hospital has come to see her to talk about your 'management plan'. Of course, this wouldn't be Australia if there wasn't a good overdose of risk mitigation.
In the evening, your temperature started going up so dad took you to the emergency department of Randwick. Luckily, they sent you home after a few hours. Your fever was probably just a side effect from the hormones they gave you yesterday.
Good night, SuperJack.
Mum
Today we went to the Easter Hat Parade at your school. Your class mates and Mrs Dale were very excited to see you.
Even though the specialists have said you can go back to school, your school principal doesn't want you to come back until someone from the hospital has come to see her to talk about your 'management plan'. Of course, this wouldn't be Australia if there wasn't a good overdose of risk mitigation.
In the evening, your temperature started going up so dad took you to the emergency department of Randwick. Luckily, they sent you home after a few hours. Your fever was probably just a side effect from the hormones they gave you yesterday.
Good night, SuperJack.
Mum
Tuesday 3 April 2012
An appointment with the oncologist
Dear Jack
Yesterday we went for another blood test at Sutherland Hospital (I think they will remember us for a while) and today we had our first oncology appointment in Randwick since you've been out of hospital.
Instead of a 1-hour appointment, it ended up being a whole day with another blood test, a chest and skull X-ray and your first Gcsf injection (to artificially boost your white blood cells).
Prof. Marshall told us he's found a research paper published by a team of specialists in Houston who have followed 19 children with myelofibrosis over 27 years. What he told us about it was very confusing, because the outcomes for the children went from one extreme to another. On the one hand I was pleased that there is some valuable information available, on the other hand I've become quite worried about your prognosis.
They're now doing further tests to make sure you have no underlying disease that causes secondary myelofibrosis and to exclude a range of other possible diagnoses. The professor said it could take weeks or even months, but I get the impression they're becoming more and more inclined to think you've got myelofibrosis.
Anyway, we'll just have to be patient.
Love
Mum
Yesterday we went for another blood test at Sutherland Hospital (I think they will remember us for a while) and today we had our first oncology appointment in Randwick since you've been out of hospital.
Instead of a 1-hour appointment, it ended up being a whole day with another blood test, a chest and skull X-ray and your first Gcsf injection (to artificially boost your white blood cells).
Prof. Marshall told us he's found a research paper published by a team of specialists in Houston who have followed 19 children with myelofibrosis over 27 years. What he told us about it was very confusing, because the outcomes for the children went from one extreme to another. On the one hand I was pleased that there is some valuable information available, on the other hand I've become quite worried about your prognosis.
They're now doing further tests to make sure you have no underlying disease that causes secondary myelofibrosis and to exclude a range of other possible diagnoses. The professor said it could take weeks or even months, but I get the impression they're becoming more and more inclined to think you've got myelofibrosis.
Anyway, we'll just have to be patient.
Love
Mum
Sunday 1 April 2012
Life seems almost normal again
Dear Jack
You came back from dad's house yesterday morning.
Lana came to see us and we made the most hilarious hat together for the Easter Hat Parade at your school. We went to Como Park for a play and a bbq and stopped over at Ben's house to say hello.
Mum
You came back from dad's house yesterday morning.
Lana came to see us and we made the most hilarious hat together for the Easter Hat Parade at your school. We went to Como Park for a play and a bbq and stopped over at Ben's house to say hello.
Today the three of you had a lot of fun in the little pool in our back yard. We went over to the neighbours' house for a quick swim in their pool. Then dad came to pick you up to take you to a park for a couple of hours.
We're all very glad to have you back, SuperJack.
Love
Thursday 29 March 2012
Home!
Dear Jack
Today you were discharged from the hospital. You went home with dad because Maya still has a cold and we don't want you to get it from her.
On the one hand, I'm glad you don't have to be at the hospital anymore, on the other hand it feels wrong to have a very sick child at home without any treatment.
Anyway, there's nothing we can do but wait for a diagnosis. I've started communicating with specialists in other countries and they're all very helpful.
I'm sure we'll find something very soon and we'll be able to make you better.
I wish you were home with me tonight.
Mum
Today you were discharged from the hospital. You went home with dad because Maya still has a cold and we don't want you to get it from her.
On the one hand, I'm glad you don't have to be at the hospital anymore, on the other hand it feels wrong to have a very sick child at home without any treatment.
Anyway, there's nothing we can do but wait for a diagnosis. I've started communicating with specialists in other countries and they're all very helpful.
I'm sure we'll find something very soon and we'll be able to make you better.
I wish you were home with me tonight.
Mum
Wednesday 28 March 2012
A non-eventful day
Dear Jack
I was very worried that you'd wake up in a lot of pain from the bone marrow aspirate, so I stayed half awake all night, ready to ask the nurses for pain relief immediately. Surprisingly though, you felt pretty good all day.
I was very worried that you'd wake up in a lot of pain from the bone marrow aspirate, so I stayed half awake all night, ready to ask the nurses for pain relief immediately. Surprisingly though, you felt pretty good all day.
Soon you remembered the annoying iPad, which drove me mad.
Your blood test this morning didn't go well at all. You screamed so much they had to take you to the treatment room. Eventually they managed to do the test and the nurse was so unbelievably quick I doubt you felt anything at all.
Back in the room we decorated easter eggs together and had a wonderful time. I really enjoyed sitting on the bed with you and showing off our colouring-in to each other.
We got a visit from two crazy Clown Doctors. You thought they were very funny.
Around lunch time, dad arrived. We also got a visit from Cindy and Thierry, who brought a lot of food for the girls and me, and two bottles of wine for me.
The ladies from the Starlight Express Room came to do face painting.
Unfortunately, your blood levels were down a lot today.
I went home shortly after lunch and dad stayed with you.
The ladies from the Starlight Express Room came to do face painting.
I went home shortly after lunch and dad stayed with you.
Love
Mum
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