So we rocked up this morning, down on 3B, and received a rather inquisitive look, that was followed by a 'What are you guy's doing here?"
After having been admonished for going to the front admissions desk last time, we were told to go back to the front and they would admit us. We didn't see 3B again. We were up on the Surgical Day Procedure Unit, along with everyone else being admitted that morning it seemed. Fortunately, we were the first to be freed from the waiting area and were looked after by a lovely nurse. It's nice to know that the nursing staff are great throughout PMH and not just in 3B.
After distracting our little man, and him having a snooze, we were in pretty much on time. It was all over in about 40 minutes, and soon we were in the ward recovering. It didn't take long before we were on our way home. So nice to have a quick visit, though we were a little bit upset that we didn't tell them to do the surgery when we were next due in for chemo. Despite the fact that we have an amazing little boy, it can't be nice to have to fast after 5 days of steroids.
But you can't keep a good man down, and he's back in to the swing of things as if nothing ever happened. Amazing.
Wednesday, May 6, 2009
Tuesday, May 5, 2009
Bookworm
Sitting at my new table and chairs.
Flicking through one of dad's books. Oma bought it back in 1984!
Don't mind the jowls - it's the steroids. No, really.
Don't mind the jowls - it's the steroids. No, really.
We thought he was looking for pictures, but he likes to flick the pages, so the thicker the better. I wonder if we still have the 10cm thick dictionary in the family.
Monday, May 4, 2009
Booked Back In
Well, we just can't keep ourselves away from day trips to Hotel 3B. We got a message today to let us know that Oliver has been scheduled for removal of his port on Wednesday at 9.30. So that means more fasting and waiting. Hopefully, since it is early in the day, it will mean we get away quickly. Well the news certainly hasn't slowed down Oliver, and neither has the treatment this time around. He is testing out his legs more and more. Enjoy. We do.
Sunday, May 3, 2009
Hard To Keep Cute Down
We are halfway through this cycle. His steroids and mercaptopurine have gone up again, due to his weight going up another 500g. We have expected this to result in a grumpier little man, but he seems to be handling it OK, almost better in fact, though that is fairly subjective depending on the state of his parents.
He has been walking more and more, though still loves his trolley. He is fairly wobbly at the moment due to his steroids, but is still eager to give his legs a workout. Won't be long now. I thought I'd share a few pics and video's with you.
Here is Oliver in a few of his favourite places.
Of course his favourite place is on mummy's shoulder. Can't say I blame him.
Next would have to be his bookcase. Let him do his own thing and it won't be long before he is going through his books.
The path below the lemon tree is also a favourite. Normally he negotiates it with his trolley, which I can't imagine is easy.
Sorry, I don't know how to re-orient this. Any idea's? Oliver is studying up hard. Actually, for those who know, he's flicking through my Boardman Tasker Omnibus. That probably means something to someone. Not sure what he's looking for, but he's obviously exasperated about not finding it.
He has been walking more and more, though still loves his trolley. He is fairly wobbly at the moment due to his steroids, but is still eager to give his legs a workout. Won't be long now. I thought I'd share a few pics and video's with you.
Here is Oliver in a few of his favourite places.
Of course his favourite place is on mummy's shoulder. Can't say I blame him.
Next would have to be his bookcase. Let him do his own thing and it won't be long before he is going through his books.
The path below the lemon tree is also a favourite. Normally he negotiates it with his trolley, which I can't imagine is easy.Oliver has learnt to sneeze. We think this is the cutest thing ever! We are a bit biased.
Sorry, I don't know how to re-orient this. Any idea's? Oliver is studying up hard. Actually, for those who know, he's flicking through my Boardman Tasker Omnibus. That probably means something to someone. Not sure what he's looking for, but he's obviously exasperated about not finding it.
In a follow-up to the last random news break, I have enrolled in a Master of Nursing Science at UWA, to begin in July. I'm pretty excited. At the moment I'm obviously interested in paediatric oncology, but I suspect I'll end up heading towards emergency nursing. The course is general and 2 years fulltime, and overloaded, so who knows what will happen at the end.
Friday, May 1, 2009
Let's Try That Again
With Karli feeling under the weather, Oliver and I headed back in to the hotel again yesterday. The plan was to have an IV line put in under a GA. So after breaky at 6.30, Oliver was fasting, and fast asleep by the time I got home around 10. Once he woke up it was off to PMH to pass the time until we went into theatre.
We had hoped that would be at about 12.30 or 1pm. We got in at about 3pm. Given our son's love for food, I was amazed at how happily he played whilst fasting. Though I suspect he didn't sleep because he was too hungry.
He was done and in recovery by 3.30. Clever dad took in his milk and cheese sticks, all which were hastily devoured, with a refill of milk from the nurse's fridge in the recovery area. We were back on the ward by 4, still chowing down, and out the door by 5 in time to enjoy the peak hour traffic.
We were a little concerned about him having a GA, but since they only used gas, and only for a short time, Oliver was none the worse for wear once he woke up. So that should be the way of it for the rest of his treatments, with a heavier GA when they decide to remove his port. Only 3 more to go. I don't think anything else could possibly go awry.
We had hoped that would be at about 12.30 or 1pm. We got in at about 3pm. Given our son's love for food, I was amazed at how happily he played whilst fasting. Though I suspect he didn't sleep because he was too hungry.
He was done and in recovery by 3.30. Clever dad took in his milk and cheese sticks, all which were hastily devoured, with a refill of milk from the nurse's fridge in the recovery area. We were back on the ward by 4, still chowing down, and out the door by 5 in time to enjoy the peak hour traffic.
We were a little concerned about him having a GA, but since they only used gas, and only for a short time, Oliver was none the worse for wear once he woke up. So that should be the way of it for the rest of his treatments, with a heavier GA when they decide to remove his port. Only 3 more to go. I don't think anything else could possibly go awry.
Wednesday, April 29, 2009
Jinxed
It's official. Dad is hereby declared as being jinxed when taking Oliver to the hospital without mum.
In an effort to let Karli have some time off today, I offered to take Oliver in to the hospital by myself. We briefly joked about my being jinxed, since both times I have done this before Oliver has returned with a cast, and then had to have his port removed. "Ha, ha," we spoke in jest. "What else could go wrong?" In order to break the suspense, in short, Oliver's port isn't working - again!
We got to the hospital parking area and headed off to get a coffee and some breakfast. Oliver amused himself with his toys and some crackers while I briefly flicked through the paper as I ate a bacon and egg sandwich and drank my coffee. We then headed in to the hospital. From then it started to go downhill. First we upset Oliver by putting some EMLA on his port site. EMLA is a topical anaesthetic cream that is used to numb the port site so it doesn't hurt when kids are needled. They don't use it on kids younger than 12 months because they are so upset at being held down that the stab hardly registers. But Oliver had seemed to be responding to being run through, so it was decided to put some EMLA on. We had also avoided it because usually it is kept in place by a piece of tegaderm, which causes much grief when coming off. We tried a different strategy of using a non-stick dressing with an elastic 'garter' thingy. Needless to say, taking Oliver's shirt off in the hospital usually results in a fair degree of complaint and protestation. Upset already and it was only 8.45am.
next I asked about bloodwork. In recent times all bloodsd have been done on the ward so the kids don't need to go near the building site next to the pathology lab. Lucky I asked.
"Haven't you gone yet?" "
"No. I haven't been given the form."
So up to pathology to have the boy's finger gored and milked of it's precious fluid. Fortunately we were the only ones in the waiting room.
Back down to the ward for my 9am appointment. Weight and length were taken - 12.05kg and 76.5cm ~ 50th and 5th percentile respectively. Then a walk to get the boy to snooze while we waited for the doctor to see us. At 10.10 I had an idea that EMLA is only supposed to be on for 1 hour, so I headed in to let a nurse know how long it had been, and hoped to remind them that I was still waiting to see a doctor. It worked, they got on to a doctor within the next 30 minutes. Then it was off to get needled.
Oliver wasn't happy about being held down, but he didn't seem to feel the needle. EMLA works apparently. Well, we couldn't get the port to bleed back - strange I thought, although I wasn't 100% happy with the way it was inserted and dressed. It was decided to give fluids to get it flowing before trying again.
The next 2 hours weren't a whole lot of fun. Oliver was very upset. Not happy in my arms, not happy in his pram, not happy with food, not happy to play. Makes for a bit of a stressful time, especially when you are ina room with 6 or so other patients. Nobody likes a screaming baby.
After an hour and a half I decided I'd had enough and unplugged his drip from the wall and went for a walk to the kitchen to heat up his lunch. Of course, he fell asleep by the time I had finished, bless him.
So I sat on the cot and rocked his pram in the same day care room. Some poor little soul started screaming after waking up from a GA. Fortunately the boy slept through it. When he woke up he seemed happy enough, so he sat and played while I gave him his luke-warm dinner. the nurses soon returned to check on him and prepare him for his chemo. Apparently they were having trouble in the chemo room, thus the long wait. Well, the boys port still didn't bleed back, he was none too pleased, and it seemed to be swollen around his port site. In fact, I'm certain I could feel the striations in his muscles - not normal for one so young. So the needle came out and a dressing was put on to soak up the fluid that was leaking out, and we trotted up to get an x-ray to check it all out. What a difference having the needle out and letting fluid drain from the body rather than get pumped in makes. I had my little boy back. Happy, settled and cute as a button.
Back on the ward the x-ray was in and the plan was laid down. The port's catheter had flicked up and so wasn't draining down to Oliver's heart. In fact, it was going up to his little head, against the flow of blood, and into smaller blood vessels. I suspect that this meant that all that screaming was due to a bit of a head ache. It is also the reason why fluid began to leak out of his port site even while he had fluid running in - the result of a difference in pressures. The plan is for mum to take him back in tomorrow to have chemo under a GA, since that's the only way to get a canulla into him with comfort for all. And that's the way it will be done for the rest of his treatment. A GA every 3 weeks until the final one on 1st July. Once Dr Kikiros is tracked down, we will have a date for his port to be removed.
So, that's that. Thank goodness that things are getting easier towards the end of his treatment - not!
Now for some positive news. We saw Dr Angela today and Oliver was able to display his walking prowess. I'm so proud of what my little man has achieved in his short life. We also saw some of our friends today. Michelle, the young 12yo girl with the same cancer as Oliver was in for a checkup. She finished treatment in February, and had to have a lumbar puncture to test her cerebrospinal fluid today. She was a stage IV, so it was in her CSF when she started treatment. She looks great. Happy, no nasogastric tube, and her hair is coming back. It was so good to see her. I can't describe it, but you could see that she wasn't drained. During her treatment you could see a deep tiredness behind her young eye's, despite the beautiful smile on her face. Now there's a sparkle returning.
And the beautiful little Ava was in for a checkup. She also looks great. Smiling, growing, beautiful hair, and just so bright and bubbly. She turns 1 in 3 weeks, and we are looking forward to celebrating with her, although Oliver will be on treatment.
Unfortunately, I met another family with their first baby, a beautiful little 11 month old daughter. In a months time, around her first birthday, she will hopefully undergo a bone marrow transplant. They have a donor and it looks like it's full steam ahead. Thankfully, Oliver hasn't needed such treatment, but I know it isn't an easy path to tread. Please keep this family in your thoughts.
In random news, I have started to listen to John Denver. It makes for quite an ecclectic mix on my ipod - John Denver, Kanye West, and Nickelback. And I'm probably heading back to uni in July. An update to follow.
In an effort to let Karli have some time off today, I offered to take Oliver in to the hospital by myself. We briefly joked about my being jinxed, since both times I have done this before Oliver has returned with a cast, and then had to have his port removed. "Ha, ha," we spoke in jest. "What else could go wrong?" In order to break the suspense, in short, Oliver's port isn't working - again!
We got to the hospital parking area and headed off to get a coffee and some breakfast. Oliver amused himself with his toys and some crackers while I briefly flicked through the paper as I ate a bacon and egg sandwich and drank my coffee. We then headed in to the hospital. From then it started to go downhill. First we upset Oliver by putting some EMLA on his port site. EMLA is a topical anaesthetic cream that is used to numb the port site so it doesn't hurt when kids are needled. They don't use it on kids younger than 12 months because they are so upset at being held down that the stab hardly registers. But Oliver had seemed to be responding to being run through, so it was decided to put some EMLA on. We had also avoided it because usually it is kept in place by a piece of tegaderm, which causes much grief when coming off. We tried a different strategy of using a non-stick dressing with an elastic 'garter' thingy. Needless to say, taking Oliver's shirt off in the hospital usually results in a fair degree of complaint and protestation. Upset already and it was only 8.45am.
next I asked about bloodwork. In recent times all bloodsd have been done on the ward so the kids don't need to go near the building site next to the pathology lab. Lucky I asked.
"Haven't you gone yet?" "
"No. I haven't been given the form."
So up to pathology to have the boy's finger gored and milked of it's precious fluid. Fortunately we were the only ones in the waiting room.
Back down to the ward for my 9am appointment. Weight and length were taken - 12.05kg and 76.5cm ~ 50th and 5th percentile respectively. Then a walk to get the boy to snooze while we waited for the doctor to see us. At 10.10 I had an idea that EMLA is only supposed to be on for 1 hour, so I headed in to let a nurse know how long it had been, and hoped to remind them that I was still waiting to see a doctor. It worked, they got on to a doctor within the next 30 minutes. Then it was off to get needled.
Oliver wasn't happy about being held down, but he didn't seem to feel the needle. EMLA works apparently. Well, we couldn't get the port to bleed back - strange I thought, although I wasn't 100% happy with the way it was inserted and dressed. It was decided to give fluids to get it flowing before trying again.
The next 2 hours weren't a whole lot of fun. Oliver was very upset. Not happy in my arms, not happy in his pram, not happy with food, not happy to play. Makes for a bit of a stressful time, especially when you are ina room with 6 or so other patients. Nobody likes a screaming baby.
After an hour and a half I decided I'd had enough and unplugged his drip from the wall and went for a walk to the kitchen to heat up his lunch. Of course, he fell asleep by the time I had finished, bless him.
So I sat on the cot and rocked his pram in the same day care room. Some poor little soul started screaming after waking up from a GA. Fortunately the boy slept through it. When he woke up he seemed happy enough, so he sat and played while I gave him his luke-warm dinner. the nurses soon returned to check on him and prepare him for his chemo. Apparently they were having trouble in the chemo room, thus the long wait. Well, the boys port still didn't bleed back, he was none too pleased, and it seemed to be swollen around his port site. In fact, I'm certain I could feel the striations in his muscles - not normal for one so young. So the needle came out and a dressing was put on to soak up the fluid that was leaking out, and we trotted up to get an x-ray to check it all out. What a difference having the needle out and letting fluid drain from the body rather than get pumped in makes. I had my little boy back. Happy, settled and cute as a button.
Back on the ward the x-ray was in and the plan was laid down. The port's catheter had flicked up and so wasn't draining down to Oliver's heart. In fact, it was going up to his little head, against the flow of blood, and into smaller blood vessels. I suspect that this meant that all that screaming was due to a bit of a head ache. It is also the reason why fluid began to leak out of his port site even while he had fluid running in - the result of a difference in pressures. The plan is for mum to take him back in tomorrow to have chemo under a GA, since that's the only way to get a canulla into him with comfort for all. And that's the way it will be done for the rest of his treatment. A GA every 3 weeks until the final one on 1st July. Once Dr Kikiros is tracked down, we will have a date for his port to be removed.
So, that's that. Thank goodness that things are getting easier towards the end of his treatment - not!
Now for some positive news. We saw Dr Angela today and Oliver was able to display his walking prowess. I'm so proud of what my little man has achieved in his short life. We also saw some of our friends today. Michelle, the young 12yo girl with the same cancer as Oliver was in for a checkup. She finished treatment in February, and had to have a lumbar puncture to test her cerebrospinal fluid today. She was a stage IV, so it was in her CSF when she started treatment. She looks great. Happy, no nasogastric tube, and her hair is coming back. It was so good to see her. I can't describe it, but you could see that she wasn't drained. During her treatment you could see a deep tiredness behind her young eye's, despite the beautiful smile on her face. Now there's a sparkle returning.
And the beautiful little Ava was in for a checkup. She also looks great. Smiling, growing, beautiful hair, and just so bright and bubbly. She turns 1 in 3 weeks, and we are looking forward to celebrating with her, although Oliver will be on treatment.
Unfortunately, I met another family with their first baby, a beautiful little 11 month old daughter. In a months time, around her first birthday, she will hopefully undergo a bone marrow transplant. They have a donor and it looks like it's full steam ahead. Thankfully, Oliver hasn't needed such treatment, but I know it isn't an easy path to tread. Please keep this family in your thoughts.
In random news, I have started to listen to John Denver. It makes for quite an ecclectic mix on my ipod - John Denver, Kanye West, and Nickelback. And I'm probably heading back to uni in July. An update to follow.
Tuesday, April 28, 2009
That Time Again
We're back in tomorrow for the 4th last treatment - hopefully. I thought you might like to see this video. It's been a bit tough to get him to perform on demand, so I had to sneak this one.
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