We headed into emergency on Sunday morning as Oscar had a temperature. I knew it was because he had finally caught the viral infection we have all had but didn't know if his bloods might have crashed or not. When we got there we were greeted by Josh, one of Oscar's favourite nurses, who was surprised to see Oscar so miserable. Even when he had mucositis he could manage to be social - but not today. Mr misery he was.
They put us in the isolation room where we had spent our first day almost 12 months ago waiting to be given the dreaded diagnosis. They then took us to the same treatment room as diagnosis day and, dejavu like, had trouble getting blood from his veins. It was Oscar's first time in hospital without his central line and we sure did miss it. The first attempt didn't seem to really go into the vein and the Dr kept moving it around inside his skin - which he did not like. So they swapped hands had another go and eventually we got there but then she spilt it all over us. I felt sorry for her as she was clearly nervous and overwhelmed.
Given that we are fast approaching the 1 year anniversary of Oscar's diagnosis it was hard not to feel like I was in some kind of weird time warp, given the similarities of experience. I remember on diagnosis day I had been bombarded with an entirely foreign language of medical terms and statistics and I was in such deep shock I couldn't even get close to understanding any of it. I also remember fixating on the one bit of information that seemed vaguely possible to digest - a nurse had said that we would be getting to know the hospital very well. I remember thinking over and over about how I didn't want to get to know this hell of a place well but trying to focus on it as a possibility in my otherwise hijacked-by-shock brain.
It was so interesting to shadow a portion of that day because we certainly do know the hospital very well and have become professionals at dealing with the procedures and inefficiencies that are part of this journey. We knew almost every nurse and doctor we encountered, as well as both of the orderlies. They all knew Oscar, not just by name, but by character and personality. When they lost the bloods that had been so painful to get and they came to tell me I wasn't surprised and I told them, "Don't worry, they will turn up. If not, we will just have to do the procedure again". When they found the bloods 2 hours later but had forgotten to order a chest x-ray (which meant a further 2 hours wait) we just shrugged and focused on creating the little bubble we have become so good at creating. This bubble involves Oscar setting up his DVD player where he wants it, me heading off to the freezer where I know I will always find a tub of ice cream for Oscar, Oscar eating his ice cream and sharing it with me, Oscar naming every object in the room including many medical instruments and me finding out which Oncologist is on duty (we were in luck - it was the Dr most likely to let us go back home if Oscar's bloods were ok) and some other simple things that make us comfortable.
We certainly have come a long way from that chaotic, terrifying, overwhelmingly shocked and anxious day almost a year ago. Its still not easy but we have so many great little tricks to help us through the moments that come our way, random and chaotic as they will always be.
After we finally had the x-ray we ran into a nurse in the corridor on our way back to emergency. She has looked after Oscar many times and stopped for a chat marvelling at how big he has gotten and how she had never seen him so miserable. Everyone agreed - he was not the Oscar we all know and love.
The good news was his chest was clear, his bloods were high and we were discharged on the proviso that we go straight back in the next morning for further assessment. Best outcome ever!
When we got home Auden asked Oscar, as he always does, "Did you have fun at hospital?" Normally the response is "Yes, Oscar saw Donna and Margaret" - it is said with great joy as he loves Dr Margaret and Donna from the clinic like they are family. This time though his response was just as honest and direct. He yelled, "NO, I didn't" and burst into tears. Bless him, it was such an awful time, especially with the bloods being so difficult.
It was a crazy busy day the next day. They swabbed his mucus to test for some of the scarier viruses and checked him over once again.
Thursday he is still scheduled to have his bone marrow. This is the one they like to do 12 months after diagnosis. We will have to wait and see how well he is as he is still a misery and they may not be able to do it. I'll let you know. They expect to see that he is still in remission. Again, I'll let you know when we know.
Take care everyone and thanks for checking in on us.
Tuesday, May 31, 2011
Tuesday, April 19, 2011
Oscar's doing ok thank you
Oscar's white cells have gone up yet again so the Dr's are increasing his chemo again. He is either really resistant to the chemo or hiding an infection of some sort they think. They have given us the ok to go on our holiday despite Oscar having a nasty head cold and have given us a referral for the hospital closest to Nelsons Bay in case he gets a temperature. They have notified the hospital about Oscar and his condition as well (boy, it sure has become complicated to get away for a few days!!)
The hospital was full on chaos in the lead up to Easter so it was very long day but, touch wood, we are hoping to get out of Sydney on Friday. We have all been sick this week so I am hoping we all start to get better so we can enjoy our long awaited escape from Sydney for a few days - and maybe even get a full nights sleep.
In the SMH on Saturday I read an article about how leading stem cell researchers from Australia and the US met up to kickstart some collaborative projects, sharing funding and taking applications for projects such as a biology program that would increase understanding of blood diseases and develop new treatments for them. In a perfect world the many cell samples Oscar has donated each time he had a bone marrow biopsy will be used by one of these scientists around the world to help some other sufferers of blood disease. And in a utopian world Oscar's pain and samples will somehow contribute to a cure. Stem cell research gives us hope that we might find such a cure.
Back in this moment of now, in this reality, we are grateful for each day and doing the best we can. We are also excited about getting away and breathing some new air for the first time since all this trauma and just reminding ourselves of the freedom and peace of the ocean.
Have a great Easter everyone.
The hospital was full on chaos in the lead up to Easter so it was very long day but, touch wood, we are hoping to get out of Sydney on Friday. We have all been sick this week so I am hoping we all start to get better so we can enjoy our long awaited escape from Sydney for a few days - and maybe even get a full nights sleep.
In the SMH on Saturday I read an article about how leading stem cell researchers from Australia and the US met up to kickstart some collaborative projects, sharing funding and taking applications for projects such as a biology program that would increase understanding of blood diseases and develop new treatments for them. In a perfect world the many cell samples Oscar has donated each time he had a bone marrow biopsy will be used by one of these scientists around the world to help some other sufferers of blood disease. And in a utopian world Oscar's pain and samples will somehow contribute to a cure. Stem cell research gives us hope that we might find such a cure.
Back in this moment of now, in this reality, we are grateful for each day and doing the best we can. We are also excited about getting away and breathing some new air for the first time since all this trauma and just reminding ourselves of the freedom and peace of the ocean.
Have a great Easter everyone.
Thursday, April 14, 2011
Blood results Friday 8th April
I haven't been able to update you as my computer has been playing up so sorry for the delay. We went to Clinic last Friday 8th April for our usual visit. Oscar is used to going into the room where they take bloods full of trust and excitement to see the nurses he knows and get a sticker as reward. He is incredibly shocked when they inflict pain by putting a needle in his arm. He looks very confused at them as he screams, like they have changed the rules on him, which they have. It only lasts for a split second, though, and then he stops mid-scream and says, "Oscar sticker". All is right with the world with a couple of stickers.
His blood results were confusing. We had doubled the dose of chemo since our last visit because his white cells had been too high. They aim to keep them at a certain level during maintenance treatment. This week they were even higher, despite the increase in chemo. I said to our Dr, "That's weird" and she said, "It is weird". This didn't make me feel any better. His white cells have never been this high since starting treatment. When he was diagnosed they were very high, the highest of any of the other kids I know who have leukemia so anything to do with high white cells scares the hell out of me.
Having said that, the Dr didn't freak out either. It was very hard to get any real read from her about what it meant but she said we will see how it is next time. So we wait......
You would think after 10 months of this waiting game that it would get easier but it doesn't. I remember one of the mum's who was 4 years ahead of us on the journey told me it never gets easier but you get better at dealing with how hard it is. You find distractions. So that is what I am trying to do - keep distracted, stay positive and I absolutely refuse to mention the 'r' word because I do not want to give it any power.
Waiting for bloods is a dance we will be doing every fortnight for the next two years and then every other month for five years after that. We aim to do it with a smile and a lot of gratitude in our hearts. That is not to say that we will always achieve this goal but it is important to remember that we are so, so, so lucky and we are reminded of that each time we visit clinic and see so many little kids going through such a hard time.
Take care and thanks for checking in on us. We know it is a long journey and we are grateful for your support.
His blood results were confusing. We had doubled the dose of chemo since our last visit because his white cells had been too high. They aim to keep them at a certain level during maintenance treatment. This week they were even higher, despite the increase in chemo. I said to our Dr, "That's weird" and she said, "It is weird". This didn't make me feel any better. His white cells have never been this high since starting treatment. When he was diagnosed they were very high, the highest of any of the other kids I know who have leukemia so anything to do with high white cells scares the hell out of me.
Having said that, the Dr didn't freak out either. It was very hard to get any real read from her about what it meant but she said we will see how it is next time. So we wait......
You would think after 10 months of this waiting game that it would get easier but it doesn't. I remember one of the mum's who was 4 years ahead of us on the journey told me it never gets easier but you get better at dealing with how hard it is. You find distractions. So that is what I am trying to do - keep distracted, stay positive and I absolutely refuse to mention the 'r' word because I do not want to give it any power.
Waiting for bloods is a dance we will be doing every fortnight for the next two years and then every other month for five years after that. We aim to do it with a smile and a lot of gratitude in our hearts. That is not to say that we will always achieve this goal but it is important to remember that we are so, so, so lucky and we are reminded of that each time we visit clinic and see so many little kids going through such a hard time.
Take care and thanks for checking in on us. We know it is a long journey and we are grateful for your support.
Sunday, March 20, 2011
The Journey of Oscar's Central Line
On the day the kind Dr in Emergency at Westmead’s Children’s Hospital told me that Oscar had Leukaemia I was alone and scared. When Pete arrived I had to try and tell him the diagnosis and could not say more than “He has L...”. Over and over I repeated this without being able to complete the word Leukaemia out load.
It was a very long day spent trying to get a needle into Oscar’s collapsing veins – the nurses literally spent hours of the day making attempts at this. They must have been short on beds and they finally transferred us to the Camperdown Ward at around 9pm. We had arrived in Emergency more than 12 hours earlier thinking Oscar had an ear infection. What a strange and dark 12 hours of being bombarded with information about a disease that could take Oscar’s life.
When we got to the ward a nurse walked into the room carrying a doll with a strange contraption in its chest. She explained that this was a central line and that Oscar would need one to make it easier for them to take blood and administer chemo and other drugs to him over the coming months of treatment. She also told us that the central line would get ripped out at some stage and that this was all part of the journey.
I remember clearly wishing that she would shut up. I could not take any more information in that day and I did not want to hear about the emergency procedures for ensuring my son did not bleed out when he one day pulled out a central line he didn’t even have yet. I also remember thinking very strongly – that is not going to happen to Oscar.
Within 12 more hours Oscar had a central line in his chest. I remember the early morning run to the theatre, kissing him as they put him off to sleep, the first of many anxious waits for his return and the shock of how sick he looked and this new strange contraption in his chest.
We have come a long, long way since that day and on Wednesday 16th March Oscar’s central line was removed! He never did pull it out and I never had to sit on his chest and apply pressure while waiting for an ambulance. We were super vigilant and careful and it served us well for almost 9 months. Well done Oscar for treating it with such respect.
Aside from the miraculous fact that it has been instrumental in saving Oscar’s life it has taught him lots of new words like, “blood”, “flush”, “push”, “central line”, “medicine”, “cold”, “all done”, “all clean now” and “change dressing”. He can say all these things very clearly and is not backward in bossing the nurses about how it works.
So on Wednesday when he came out of surgery and I pointed out to him that it was gone he looked down, spread his arms out wide and said, “Oscar’s central line all gone”, and then promptly burst into tears. On waking the next day he did the same thing. He had become very attached to his special central line and liked walking around the house after bath pushing his chest out, showing off and saying, “Oscar’s central line”, over and over.
It is very emotional.
For all of us.
Thank you central line. You served us well and we are grateful for such a nifty invention and all the pain it saved us along the way.
Luckily, whenever we say goodbye to one thing we are always saying hello to another and I’m sure Oscar will completely forget how much he loved his central line when he discovers that he can now go swimming and have the freedom to play with water whenever he wants.
So, goodbye central line and hello our new friend ‘freedom’.
It was a very long day spent trying to get a needle into Oscar’s collapsing veins – the nurses literally spent hours of the day making attempts at this. They must have been short on beds and they finally transferred us to the Camperdown Ward at around 9pm. We had arrived in Emergency more than 12 hours earlier thinking Oscar had an ear infection. What a strange and dark 12 hours of being bombarded with information about a disease that could take Oscar’s life.
When we got to the ward a nurse walked into the room carrying a doll with a strange contraption in its chest. She explained that this was a central line and that Oscar would need one to make it easier for them to take blood and administer chemo and other drugs to him over the coming months of treatment. She also told us that the central line would get ripped out at some stage and that this was all part of the journey.
I remember clearly wishing that she would shut up. I could not take any more information in that day and I did not want to hear about the emergency procedures for ensuring my son did not bleed out when he one day pulled out a central line he didn’t even have yet. I also remember thinking very strongly – that is not going to happen to Oscar.
Within 12 more hours Oscar had a central line in his chest. I remember the early morning run to the theatre, kissing him as they put him off to sleep, the first of many anxious waits for his return and the shock of how sick he looked and this new strange contraption in his chest.
We have come a long, long way since that day and on Wednesday 16th March Oscar’s central line was removed! He never did pull it out and I never had to sit on his chest and apply pressure while waiting for an ambulance. We were super vigilant and careful and it served us well for almost 9 months. Well done Oscar for treating it with such respect.
Aside from the miraculous fact that it has been instrumental in saving Oscar’s life it has taught him lots of new words like, “blood”, “flush”, “push”, “central line”, “medicine”, “cold”, “all done”, “all clean now” and “change dressing”. He can say all these things very clearly and is not backward in bossing the nurses about how it works.
So on Wednesday when he came out of surgery and I pointed out to him that it was gone he looked down, spread his arms out wide and said, “Oscar’s central line all gone”, and then promptly burst into tears. On waking the next day he did the same thing. He had become very attached to his special central line and liked walking around the house after bath pushing his chest out, showing off and saying, “Oscar’s central line”, over and over.
It is very emotional.
For all of us.
Thank you central line. You served us well and we are grateful for such a nifty invention and all the pain it saved us along the way.
Luckily, whenever we say goodbye to one thing we are always saying hello to another and I’m sure Oscar will completely forget how much he loved his central line when he discovers that he can now go swimming and have the freedom to play with water whenever he wants.
So, goodbye central line and hello our new friend ‘freedom’.
Thursday, March 10, 2011
Clinic Friday 11th March 2011
Today was one of those days in clinic that felt a bit like a war zone so I left there a bit shell shocked and very, very grateful that we didn't need to stay for a treatment. Oscar's blood results are dropping as expected but no adjustment to the medication levels yet. Probably in a few weeks time he will need a dosage change.
Oscar's central line has a blockage and possible split in the line. He is due to have it removed next Wednesday but if it starts leaking fluid in the next few days I'll have to take him in for an emergency removal. Here's hoping that doesn't happen. Can't wait, though, to get it removed, to be free of all the possible complications it can cause (although we will no doubt miss it each week when Oscar will have to have a needle instead). Swings and roundabouts.
That's all Oscar's news for now. Thanks again for checking in on us. :)
Oscar's central line has a blockage and possible split in the line. He is due to have it removed next Wednesday but if it starts leaking fluid in the next few days I'll have to take him in for an emergency removal. Here's hoping that doesn't happen. Can't wait, though, to get it removed, to be free of all the possible complications it can cause (although we will no doubt miss it each week when Oscar will have to have a needle instead). Swings and roundabouts.
That's all Oscar's news for now. Thanks again for checking in on us. :)
Thursday, March 3, 2011
Starting Maintenance Chemo
OK, we got the go ahead to start chemo tonight. Oscar will have a drug called Mercaptipurine every day for the next 18 months and, once a week, another drug called Methotrexate. Oscar toleratures the first drug well but you may remember Methotrexate is the drug that gave Oscar bad mucusitis, although, of course, this is a much lower dose.
There may be an adjustment period over the next couple of months, depending on how Oscar tolerates the drugs. We will be in clinic each week to check his bloods. In some cases the bloods can crash and there may be some hospital time involved but we are expecting Oscar to cope well with the medication and make the adjustment smoothly, as he tends to do. The Dr's aim, throughout maintenance, to keep his white blood cells between 2 and 3 and to ensure he doesn't become neutropenic (neutrophils need to be above 1) and adjust the dosage whenever there is variation from these goals.
Both drugs have to be given in the evening a minimum of 1 hour away from food and particularly dairy. For Oscar this means waking him an hour or so after he has gone to sleep, getting him to take the drug and then getting him back to sleep. Its always hard doing this, especially in the first week, but it will no doubt become a habit we all surrender to each day.
Oscar is also scheduled to have his central line removed on 16th March - this will be the most exciting thing to happen to him since diagnosis. To have his freedom back to swim and play with water as every toddler loves to do will be a joyous occasion.
As always, with each new phase of treatment the key is to surrender.
Sounds simple........... but then simple can be hard to find at times. Still, a good thing to aim for.
Surrender. Just be.
Have a great weekend.
There may be an adjustment period over the next couple of months, depending on how Oscar tolerates the drugs. We will be in clinic each week to check his bloods. In some cases the bloods can crash and there may be some hospital time involved but we are expecting Oscar to cope well with the medication and make the adjustment smoothly, as he tends to do. The Dr's aim, throughout maintenance, to keep his white blood cells between 2 and 3 and to ensure he doesn't become neutropenic (neutrophils need to be above 1) and adjust the dosage whenever there is variation from these goals.
Both drugs have to be given in the evening a minimum of 1 hour away from food and particularly dairy. For Oscar this means waking him an hour or so after he has gone to sleep, getting him to take the drug and then getting him back to sleep. Its always hard doing this, especially in the first week, but it will no doubt become a habit we all surrender to each day.
Oscar is also scheduled to have his central line removed on 16th March - this will be the most exciting thing to happen to him since diagnosis. To have his freedom back to swim and play with water as every toddler loves to do will be a joyous occasion.
As always, with each new phase of treatment the key is to surrender.
Sounds simple........... but then simple can be hard to find at times. Still, a good thing to aim for.
Surrender. Just be.
Have a great weekend.
Tuesday, March 1, 2011
Clinic Visit Friday 25th Feb 2011
Last Friday we visited clinic and Oscar's blood results showed that he is still neutropenic so he has not started maintenance chemo yet. Nothing to worry about, he is just fighting off a virus and it gives us another weeks reprieve on having to wake him at night to give him chemo. Once we start the chemo there will be an adjustment period, as with all new phases of treatment, and we may be required to go to clinic a little more frequently.
Even though we have been on hold now for almost a month it has been a very busy time. Auden has changed from preschool to a long daycare preschool so that we have more flexibility with hours, Pete has changed job site and is working longer hours 6 days a week, Oscar is busy recovering and we are trying to get him back on track with more 'normal' life and I am trying to get some basic things done for myself which haven't been done for years.
So this week I finally found a Dr nearby that I like (thanks Lisa and Debbie), and a much better physio who tells me that my ankle, which I injured on 3rd Jan, is a bad sprain and may take another couple of months to heal. He couldn't believe I had been walking around on it and it wasn't until he relieved some of the pain that I realised just how much pain I was in! (the mind is a very powerful thing!!!). Auden has had his second week in his new preschool and loves it (thanks again Lisa). Pete's been working and catching up with Iron Maiden friends and Oscar has been getting his head around having all the toys to himself without Auden.
All first little steps into the land of 'normal', with lots of wonderful rewards - like every time Oscar does some typical toddler play thing. It has been so many months of nothing but medication and procedures for him and any little bit of freedom he gets to enjoy just being and doing is a real miracle that melts my heart with gratitude.
So, my apologies for no updates lately but I have barely had the time and absolutely no ability to string two words together. Just processing, now that we are not consumed by treatment and trauma, merely processing for the first time.
We have also been devastated by news concerning my Aunt who has been diagnosed with a very similar disease to Leukemia and we are sending all our love to her entire family, who are very dear to my heart. I will respect her privacy and not use any names but I know that the great love and connection they have as a family will shine incredible strength around her.
One day at a time....thanks for checking in on us and keeping us in your thoughts and lots of love and light to all those people out there fighting the cancer fight. Remember - when everything else falls away you realise that the only thing that matters is LOVE. x
Even though we have been on hold now for almost a month it has been a very busy time. Auden has changed from preschool to a long daycare preschool so that we have more flexibility with hours, Pete has changed job site and is working longer hours 6 days a week, Oscar is busy recovering and we are trying to get him back on track with more 'normal' life and I am trying to get some basic things done for myself which haven't been done for years.
So this week I finally found a Dr nearby that I like (thanks Lisa and Debbie), and a much better physio who tells me that my ankle, which I injured on 3rd Jan, is a bad sprain and may take another couple of months to heal. He couldn't believe I had been walking around on it and it wasn't until he relieved some of the pain that I realised just how much pain I was in! (the mind is a very powerful thing!!!). Auden has had his second week in his new preschool and loves it (thanks again Lisa). Pete's been working and catching up with Iron Maiden friends and Oscar has been getting his head around having all the toys to himself without Auden.
All first little steps into the land of 'normal', with lots of wonderful rewards - like every time Oscar does some typical toddler play thing. It has been so many months of nothing but medication and procedures for him and any little bit of freedom he gets to enjoy just being and doing is a real miracle that melts my heart with gratitude.
So, my apologies for no updates lately but I have barely had the time and absolutely no ability to string two words together. Just processing, now that we are not consumed by treatment and trauma, merely processing for the first time.
We have also been devastated by news concerning my Aunt who has been diagnosed with a very similar disease to Leukemia and we are sending all our love to her entire family, who are very dear to my heart. I will respect her privacy and not use any names but I know that the great love and connection they have as a family will shine incredible strength around her.
One day at a time....thanks for checking in on us and keeping us in your thoughts and lots of love and light to all those people out there fighting the cancer fight. Remember - when everything else falls away you realise that the only thing that matters is LOVE. x
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