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
Thursday 29 March 2012
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
Tuesday 27 March 2012
The big day... take two
Dear Jack
Another bone marrow aspiration today...
This time it would be done in the big operating theater. Last night you were still first on the list, scheduled for 8am. This morning Dr. Mimi told me a little girl had come in during the night who needed to be operated on first, so you would be second. You went in around 10.30am. This time they did a very quick job with the anaesthetics. You were asleep in a matter of seconds. You came out of theater after 20 minutes, which was a good sign. Just like after the first aspirate, I told you you could eat anything you liked afterwards. Goodness me, you ate like a horse again!
Back in the room I noticed they had only done one puncture instead of the double puncture the specialists had ordered. Again a good sign I thought; they must have been able to extract a good amount of bone marrow just from the one puncture.
We spent half the day in the Starlight Express Room where we did some crafting and you played on the Wii.
The doctors came to see us at 6.00pm and brought more surprises. It had been very difficult again to extract bone marrow. No leukemia cells were found but lots of scar tissue. Prof. Marshall said you do not have leukemia. He said one possibility was myelofibrosis, but that is extremely rare in children.
Mum
Another bone marrow aspiration today...
This time it would be done in the big operating theater. Last night you were still first on the list, scheduled for 8am. This morning Dr. Mimi told me a little girl had come in during the night who needed to be operated on first, so you would be second. You went in around 10.30am. This time they did a very quick job with the anaesthetics. You were asleep in a matter of seconds. You came out of theater after 20 minutes, which was a good sign. Just like after the first aspirate, I told you you could eat anything you liked afterwards. Goodness me, you ate like a horse again!
Back in the room I noticed they had only done one puncture instead of the double puncture the specialists had ordered. Again a good sign I thought; they must have been able to extract a good amount of bone marrow just from the one puncture.
We spent half the day in the Starlight Express Room where we did some crafting and you played on the Wii. 
The doctors came to see us at 6.00pm and brought more surprises. It had been very difficult again to extract bone marrow. No leukemia cells were found but lots of scar tissue. Prof. Marshall said you do not have leukemia. He said one possibility was myelofibrosis, but that is extremely rare in children.
Because we still don't have a diagnosis, he suggested to keep you in hospital until Thursday and take you off the antibiotic drip, then send you home and give you a daily dose of Gcsf, a hormone that boosts your white blood cells, to keep you safe at home.
Surprisingly, your blood levels had all gone up today. I'm secretely hoping you'll get better without any interference.
One of the play therapists gave you an iPad and you were so obesessed with the games that you hardly spoke to me all afternoon and evening. We made lots of cupcakes together in the afternoon, but when you were still playing games at 10.30pm, I really started to miss my boy.
One of the play therapists gave you an iPad and you were so obesessed with the games that you hardly spoke to me all afternoon and evening. We made lots of cupcakes together in the afternoon, but when you were still playing games at 10.30pm, I really started to miss my boy.
Love
Monday 26 March 2012
The big day...
Dear Jack
Today was supposed to be the big day. We were finally going to find out what's wrong whith you. We had to wait until 4pm to see the doctors, which caused a bit of stress around who was going to pick up Emily and Maya from childcare.
Finally Prof. Marshall, Dr. Mimi Lu and Fellow Karen Gomez came to see us. Dr. Marshall said the biopsy was again inconclusive. He said it only happened in less than 1% of patients that it was so hard to get a diagnosis. There were possibly some leukemia cells in your bone marrow but they weren't sure. They did find a lot of scar tissue, which is unusual. Prof. Marshall said that leukemia is still a probability, whilst aplastic anemia and an infection have now been ruled out. He said that you may have a very early stage of leukemia and therefore it's very hard to pick it up.
Another bone marrow aspiration will be done tomorrow and this time the most senior hematologist in the hospital will do it. If that bone marrow aspirate doesn't give us any answers, they will just have to let you go home and see what happens. A form of leukemia will probably eventually develop to a stage where they can pick it up and categorise it. How very frustrating!
Luckily, you don't seem to be overly faced by the prospect of another bone marrow aspiration tomorrow, despite the pain you had after the first one and the horrible experience of the anaesthetics.
Love
Mum.
Today was supposed to be the big day. We were finally going to find out what's wrong whith you. We had to wait until 4pm to see the doctors, which caused a bit of stress around who was going to pick up Emily and Maya from childcare.
Finally Prof. Marshall, Dr. Mimi Lu and Fellow Karen Gomez came to see us. Dr. Marshall said the biopsy was again inconclusive. He said it only happened in less than 1% of patients that it was so hard to get a diagnosis. There were possibly some leukemia cells in your bone marrow but they weren't sure. They did find a lot of scar tissue, which is unusual. Prof. Marshall said that leukemia is still a probability, whilst aplastic anemia and an infection have now been ruled out. He said that you may have a very early stage of leukemia and therefore it's very hard to pick it up.
Another bone marrow aspiration will be done tomorrow and this time the most senior hematologist in the hospital will do it. If that bone marrow aspirate doesn't give us any answers, they will just have to let you go home and see what happens. A form of leukemia will probably eventually develop to a stage where they can pick it up and categorise it. How very frustrating!
Luckily, you don't seem to be overly faced by the prospect of another bone marrow aspiration tomorrow, despite the pain you had after the first one and the horrible experience of the anaesthetics.
Love
Mum.
Sunday 25 March 2012
Waiting, waiting, waiting...
Dear Jack
We just have to wait and wait for the result of the biopsy. There's nothing else we can do.
Dad was with you yesterday morning and you went to the Starlight Express room together where you played computer games.
We both had a pretty good night.
Stay strong, SuperJack.
Mum
We just have to wait and wait for the result of the biopsy. There's nothing else we can do.
Dad was with you yesterday morning and you went to the Starlight Express room together where you played computer games.
I came back to the hospital in the afternoon. Kara came to visit and we had takeaway pizza in the evening.
This morning they told us you could have breaks from your antibiotic drip so we'll be able to go for little walks in the hospital and the fairy garden.
Unfortunately I started showing symptoms of a cold (which I got from Maya yesterday) so I was not allowed to stay with you. Dad took over from me this afternoon and I will stay at home with the girls until I'm better.
Stay strong, SuperJack.
Mum
Saturday 24 March 2012
Dad at the hospital, mum at home with the girls
Dear Jack
I was hoping to come to the hospital with the girls today but Maya has a cold so I can't bring her with me.
I wish I could be with you.
I've organised with Stirling's mum that they'll visit you this afternoon.
It seems like you're having a pretty good and non-eventful day. Dad tells me you requested a normal blood test instead of a finger prick this morning. You funny boy!
Tomorrow I'll be back at the hospital and I can't wait to give you a very big cuddle. I can't stand being away from you.
Lots of love
Mum
I was hoping to come to the hospital with the girls today but Maya has a cold so I can't bring her with me.
I wish I could be with you.
I've organised with Stirling's mum that they'll visit you this afternoon.
It seems like you're having a pretty good and non-eventful day. Dad tells me you requested a normal blood test instead of a finger prick this morning. You funny boy!
Tomorrow I'll be back at the hospital and I can't wait to give you a very big cuddle. I can't stand being away from you.
Lots of love
Mum
Thursday 22 March 2012
A day with plenty of entertainment
Dear Jack
I called aunty Ky to tell her the news. We haven't been in touch much lately but she is your godmother and a dear friend of mine. She arrived at the hospital about 15 minutes later. Shortly after that, Virginie arrived with a DVD player for you and several DVDs. I finally managed to take a shower and wash some clothes.
We got a visit from Giggle, a very funny puppet on a trike. A little while later, two magicians came into the room and performed several tricks. Then, a lady came in with an iPad and made a song and video clip with you.
Kylene and Virginie went home and the two of us sat on your bed for a long time. You were too sore to lie down but you looked very tired. I insisted you'd take Panadol and codeine again, which you eventually did. You were asleep within 10 minutes.
We both had a reasonable night. You cried out for me in the middle of the night so I came in bed with you and we slept together.
In the morning, you were very sore from the bone marrow punction and you could hardly move. You also had a temperature. They gave you Panadol, which didn't make much difference to the pain. I asked for something stronger. The nurse didn't want to give you anything so I told her to go check with a doctor. She came back with codeine, which made you feel a whole lot better. We even went for a walk around the ward together, wheeling your drip around with us.
You had another finger prick, which you didn't like at all.
We got a visit from Giggle, a very funny puppet on a trike. A little while later, two magicians came into the room and performed several tricks. Then, a lady came in with an iPad and made a song and video clip with you.
Kylene and Virginie went home and the two of us sat on your bed for a long time. You were too sore to lie down but you looked very tired. I insisted you'd take Panadol and codeine again, which you eventually did. You were asleep within 10 minutes.
Around 4pm dad arrived and about half an hour later I left to spend some time with Emily and Maya at home. As I got out of the car, I got a phone call from you. You were very distressed and cried because you wanted me there. You had woken up from your afternoon sleep and found dad in your room instead of me and that had really confused you. Shortly after the girls arrived home I got another distressed phone call from you. Next time, we'll have to make sure that the changeover happens when you're awake.
I wish I could be with you tonight but I think Emily and Maya need me now. I hope you'll have a very good night and won't be so sore anymore in the morning.
Big kiss and hug
Mum
Wednesday 21 March 2012
Hoping for answers
Dear Jack
I only slept about 15 minutes last night.
In the morning, you had another blood test, which was again very traumatic.
I called our neighbour Kate Maree. She came to the hospital a couple hours later and did a lot of drawing with you. By then, dad had gone home to pick up the girls.
You had a finger prick to see if your red blood cells were high enough to go ahead with the bone marrow aspiration. They weren't, so they told us you needed another blood transfusion.
Dad arrived with the girls. Kate Maree went home. After a little while, dad took the girls back home and you and I walked to another ward for the bone marrow aspiration. We got a visit from the Clown Doctors, who called you Doctor Smartie because they thought you were so smart.
You kept asking me if you were going to get any more needles and I reassured you that nothing bad was going to happen. I was wrong again. The fluid they ran through your cannula made your hand sting very badly and the gas they put on your face irritated your eyes. You were crying and I felt like I had failed you again. With tears in my eyes I left the operating theater. They told me it should take 20 minutes.
I quickly went downstairs to get some food. When I came back up, you were not in recovery yet. It took forever and I kept asking the nurses to go and check on you. When you finally came out of theater, after an hour, they told me they'd had to do two punctures because they couldn't get enough bone marrow out.
Dad joined us in the room where you were recovering. I went to the bathroom and ran into aunty Shelley. She joined you and dad while I went for a little walk. Because you'd had to fast since 5.30 this morning, I had promised you you could eat whatever you want after the procedure. Boy, did you eat! We joked about you not leaving any food in the cafetaria for the other patients.
Back in the room we had to wait several hours for the test results. You were the life of the party the whole afternoon. You were talking non-stop and it made me realise how flat you had been in the last few weeks. The second blood transfusion had suddenly brought our old Jack back.
Eventually, three doctors came into the room and took us into a conference room. They told us the tests were inconclusive because they had not been able to extract bone marrow - it was just blood. We'd have to wait until Monday to get the results of the biopsy. However, Prof. Marshall, the oncologist said he had ruled out an infection and the result was going to be some form of leukemia or another bone marrow malfunction which was just as life threatening. For me this wasn't really news, as I spent a bit of time online last night to check out the symptoms of leukemia and knew already that you weren't just having an infection. In fact, I was reassured by the doctor's explanation about the various treatments, which were all much shorter than I expected. I think for dad the news hit really hard. I went back into the room with you while dad went to have a chat with aunty Shelley.
Dad and I had a chat about the 'plan of action' from here on whilst aunty Shelly stayed with you.
In the evening, I finally called opa to tell him what was happening.
Dad went home to be with the girls. I stayed with you. You were full of life and didn't go to sleep until 10.30pm. What a wonderful kid you are!
Lots of love
Mum
I only slept about 15 minutes last night.
In the morning, you had another blood test, which was again very traumatic.
I called our neighbour Kate Maree. She came to the hospital a couple hours later and did a lot of drawing with you. By then, dad had gone home to pick up the girls.
You had a finger prick to see if your red blood cells were high enough to go ahead with the bone marrow aspiration. They weren't, so they told us you needed another blood transfusion.
Dad arrived with the girls. Kate Maree went home. After a little while, dad took the girls back home and you and I walked to another ward for the bone marrow aspiration. We got a visit from the Clown Doctors, who called you Doctor Smartie because they thought you were so smart.
You kept asking me if you were going to get any more needles and I reassured you that nothing bad was going to happen. I was wrong again. The fluid they ran through your cannula made your hand sting very badly and the gas they put on your face irritated your eyes. You were crying and I felt like I had failed you again. With tears in my eyes I left the operating theater. They told me it should take 20 minutes.
I quickly went downstairs to get some food. When I came back up, you were not in recovery yet. It took forever and I kept asking the nurses to go and check on you. When you finally came out of theater, after an hour, they told me they'd had to do two punctures because they couldn't get enough bone marrow out.
Dad joined us in the room where you were recovering. I went to the bathroom and ran into aunty Shelley. She joined you and dad while I went for a little walk. Because you'd had to fast since 5.30 this morning, I had promised you you could eat whatever you want after the procedure. Boy, did you eat! We joked about you not leaving any food in the cafetaria for the other patients.
Back in the room we had to wait several hours for the test results. You were the life of the party the whole afternoon. You were talking non-stop and it made me realise how flat you had been in the last few weeks. The second blood transfusion had suddenly brought our old Jack back.
Eventually, three doctors came into the room and took us into a conference room. They told us the tests were inconclusive because they had not been able to extract bone marrow - it was just blood. We'd have to wait until Monday to get the results of the biopsy. However, Prof. Marshall, the oncologist said he had ruled out an infection and the result was going to be some form of leukemia or another bone marrow malfunction which was just as life threatening. For me this wasn't really news, as I spent a bit of time online last night to check out the symptoms of leukemia and knew already that you weren't just having an infection. In fact, I was reassured by the doctor's explanation about the various treatments, which were all much shorter than I expected. I think for dad the news hit really hard. I went back into the room with you while dad went to have a chat with aunty Shelley.
Dad and I had a chat about the 'plan of action' from here on whilst aunty Shelly stayed with you.
In the evening, I finally called opa to tell him what was happening.
Dad went home to be with the girls. I stayed with you. You were full of life and didn't go to sleep until 10.30pm. What a wonderful kid you are!
Lots of love
Mum
Tuesday 20 March 2012
How it all started...
Dear Jack
A few months ago I was following a blog about a little Belgian girl, Marie, who was losing her battle with cancer. I remember trying to imagine what it must feel like to be the parent of a very sick child. I was wondering how you can possibly get on with your life after losing a child and where you get the energy from to get out of bed in the morning and be there for your other children.
Little did I know at that time that I would be wheeling you into the oncology ward of the Randwick Childrens Hospital in a wheel chair tonight.
You've been quite sick lately and we've taken you to the doctor's a number of times. On 14 February, you spent an entire day at Sutherland Hospital, then Randwick Hospital, because they thought you had appendicitis. In the end, you were diagnosed with a virus and discharged. However, you kept getting temperatures and headaches and you were feeling very weak. Over the last few days you couldn't even walk 50 meters without a little rest. You had also become very thin and pale. When I noticed this morning that your temperature was up again, I decided to take you to the doctor's again. Dr. Patterson sent us off for extensive blood tests and a chest X-ray. You begged me to have the blood test tomorrow because you were still traumatised by the one you had at Sutherland but I managed to convince you to have it today. We drove to Miranda and dad met us there a little while later. After the test, you and dad had something to eat at Westfield while I ran a few errands.
Only a couple of hours after we got home, Dr. Patterson called and said I had to take you to the hospital straight away because there was something seriously wrong with your blood counts. I called dad to explain, packed an overnight bag for both of us and drove to Randwick. In the car you made me promise there would be no more blood tests and needles. I reassured you that we had already done the test so you shouldn't worry. Dad picked up the girls from childcare and took them to nanny and baba.
We didn't have to wait long at triage and were soon taken into a room. They told us you'd need another blood test, which made me feel like I had betrayed you. You also needed an intravenous antibiotic because your white blood cells were so low you'd never be able to fight an infection. And you needed a blood transfusion because your red blood cells were extremely low. I had no idea what was going on but I wasn't overly worried. Until a person came into the room and introduced himself as a 'blood and cancer specialist'... Shortly after that, a social worker came to see me. At that stage, it really started to sink in that these people were seriously thinking about cancer. I called dad in distress. He was already on his way to the hospital. In the meantime, they did the other blood test and put you on a drip. The staff were all extremely nice and helpful.
Dad arrived and we had a chat in the parent room while you were watching a DVD. We then took turns in keeping you company whilst the other one went for a walk to digest the news.
The oncologist came back to expain things again to dad. He said there was a chance it was just an infection. But I thought he sounded quite concerned.
Around 7.30pm, we were taken to the oncology ward. I was crying whilst pushing your wheel chair but tried very hard to hide it for you.
My heart sank when they took us into a room with three other beds. I hadn't expected a shared room at all.
You fell asleep soon after you lay down on the bed and didn't even wake up when they gave you the blood transfusion. You were exhausted.
Dad and I cried all night. I called several friends because I didn't want to tell opa and oma yet but needed an outlet.
Tomorrow you'll have another blood test, you poor little boy, to see if your blood count has improved. If not, you'll have a bone marrow test that will give us confirmation either way.
I'm trying to be positive and convince myself that it could just be an infection., but I have visions in my head of several months in hospital, you going through chemo and the girls just having to fit in with all of this.
The more I think about it, the more I get the feeling that the hospital staff already know what we don't want to hear: the pathology centre rushing the tests off to Dr. Patterson, Dr. Patterson sending me to the hospital straight away, the triage nurse letting us in without delay, the little room we were taken to whilst all other kids were just lying behind a curtain, the oncologist, the social worker, the need for a bone marrow test and finally being taken to the oncology ward... I don't get the impression people here take the possibility of an infection seriously.
I wish I could take your place in that hospital bed.
Let's just hope we'll find out tomorrow that this was all false alarm.
Sweet dreams, my dear Jack. I can't promise no one is going to hurt you again with needles tomorrow, but I can promise you I will be by your side and be as strong as possible.
Love
Mum
A few months ago I was following a blog about a little Belgian girl, Marie, who was losing her battle with cancer. I remember trying to imagine what it must feel like to be the parent of a very sick child. I was wondering how you can possibly get on with your life after losing a child and where you get the energy from to get out of bed in the morning and be there for your other children.
Little did I know at that time that I would be wheeling you into the oncology ward of the Randwick Childrens Hospital in a wheel chair tonight.
You've been quite sick lately and we've taken you to the doctor's a number of times. On 14 February, you spent an entire day at Sutherland Hospital, then Randwick Hospital, because they thought you had appendicitis. In the end, you were diagnosed with a virus and discharged. However, you kept getting temperatures and headaches and you were feeling very weak. Over the last few days you couldn't even walk 50 meters without a little rest. You had also become very thin and pale. When I noticed this morning that your temperature was up again, I decided to take you to the doctor's again. Dr. Patterson sent us off for extensive blood tests and a chest X-ray. You begged me to have the blood test tomorrow because you were still traumatised by the one you had at Sutherland but I managed to convince you to have it today. We drove to Miranda and dad met us there a little while later. After the test, you and dad had something to eat at Westfield while I ran a few errands.
Only a couple of hours after we got home, Dr. Patterson called and said I had to take you to the hospital straight away because there was something seriously wrong with your blood counts. I called dad to explain, packed an overnight bag for both of us and drove to Randwick. In the car you made me promise there would be no more blood tests and needles. I reassured you that we had already done the test so you shouldn't worry. Dad picked up the girls from childcare and took them to nanny and baba.
We didn't have to wait long at triage and were soon taken into a room. They told us you'd need another blood test, which made me feel like I had betrayed you. You also needed an intravenous antibiotic because your white blood cells were so low you'd never be able to fight an infection. And you needed a blood transfusion because your red blood cells were extremely low. I had no idea what was going on but I wasn't overly worried. Until a person came into the room and introduced himself as a 'blood and cancer specialist'... Shortly after that, a social worker came to see me. At that stage, it really started to sink in that these people were seriously thinking about cancer. I called dad in distress. He was already on his way to the hospital. In the meantime, they did the other blood test and put you on a drip. The staff were all extremely nice and helpful.
Dad arrived and we had a chat in the parent room while you were watching a DVD. We then took turns in keeping you company whilst the other one went for a walk to digest the news.
The oncologist came back to expain things again to dad. He said there was a chance it was just an infection. But I thought he sounded quite concerned.
Around 7.30pm, we were taken to the oncology ward. I was crying whilst pushing your wheel chair but tried very hard to hide it for you.
My heart sank when they took us into a room with three other beds. I hadn't expected a shared room at all.
You fell asleep soon after you lay down on the bed and didn't even wake up when they gave you the blood transfusion. You were exhausted.
Dad and I cried all night. I called several friends because I didn't want to tell opa and oma yet but needed an outlet.
Tomorrow you'll have another blood test, you poor little boy, to see if your blood count has improved. If not, you'll have a bone marrow test that will give us confirmation either way.
I'm trying to be positive and convince myself that it could just be an infection., but I have visions in my head of several months in hospital, you going through chemo and the girls just having to fit in with all of this.
The more I think about it, the more I get the feeling that the hospital staff already know what we don't want to hear: the pathology centre rushing the tests off to Dr. Patterson, Dr. Patterson sending me to the hospital straight away, the triage nurse letting us in without delay, the little room we were taken to whilst all other kids were just lying behind a curtain, the oncologist, the social worker, the need for a bone marrow test and finally being taken to the oncology ward... I don't get the impression people here take the possibility of an infection seriously.
I wish I could take your place in that hospital bed.
Let's just hope we'll find out tomorrow that this was all false alarm.
Sweet dreams, my dear Jack. I can't promise no one is going to hurt you again with needles tomorrow, but I can promise you I will be by your side and be as strong as possible.
Love
Mum
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