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
Wednesday 25 April 2012
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
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