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
Tuesday, March 1, 2011
Friday, February 18, 2011
Finished Intensive Phase of Treatment!!
Oscar has officially finished his intensive phase of treatement. All his blood results show a great recovery so far except his neutrophils are very low (this is due to the fact that he is fighting off a virus Auden picked up at pre-school). Oscar was supposed to start maintenance chemo today but as his neutrophils are low we are delaying it another week.
I will know more about maintenance chemo once we start but basically we will be giving Oscar chemo every day for the next 18 months. It will be in tablet form so we can simply dissolve it in water and not so simply get Oscar to swallow it each day. We will still be visiting clinic weekly to keep track of his blood results and ensure he is on the right dosage and so on.
So we are in a time of transition. Auden is getting used to Pre-School, Oscar is recovering from treatment and adjusting to Auden's absence 2 days a week, Pete has been transferred to a new work site in Zetland and is working longer hours and we are all collectively adjusting to the change from living in 'survival' mode and trying to discover some idea of what a more 'normal' life is like. They say once you finish the intensive treatment you get a chance to stop and really comprehend the situation - which is a good thing - but to go easy on yourself because a lot of emotions may come up. That's what they tell us. We'll let you know how it goes.
In the mean time I would just like to say that we are incredibly grateful for all the love and support you have all sent our way to help us through. We couldn't have done it without all of you and there just simply aren't words enough to say thank you.
And - big cheers for Oscar. We are so proud of him. He has led us all through this journey with his incredible resilience, fiercly strong will and the ability to find joy in every moment of now. We are also very proud of Auden for being so loving and understanding throughout this time - he is wise beyond his years and has made it easier for me than it could have been.
Children are very resilient, always in the moment, not yet socialised to narrow their minds in any way and vastly intelligent, all-knowing little beings. We adults can learn a lot from them.
More updates soon...
I will know more about maintenance chemo once we start but basically we will be giving Oscar chemo every day for the next 18 months. It will be in tablet form so we can simply dissolve it in water and not so simply get Oscar to swallow it each day. We will still be visiting clinic weekly to keep track of his blood results and ensure he is on the right dosage and so on.
So we are in a time of transition. Auden is getting used to Pre-School, Oscar is recovering from treatment and adjusting to Auden's absence 2 days a week, Pete has been transferred to a new work site in Zetland and is working longer hours and we are all collectively adjusting to the change from living in 'survival' mode and trying to discover some idea of what a more 'normal' life is like. They say once you finish the intensive treatment you get a chance to stop and really comprehend the situation - which is a good thing - but to go easy on yourself because a lot of emotions may come up. That's what they tell us. We'll let you know how it goes.
In the mean time I would just like to say that we are incredibly grateful for all the love and support you have all sent our way to help us through. We couldn't have done it without all of you and there just simply aren't words enough to say thank you.
And - big cheers for Oscar. We are so proud of him. He has led us all through this journey with his incredible resilience, fiercly strong will and the ability to find joy in every moment of now. We are also very proud of Auden for being so loving and understanding throughout this time - he is wise beyond his years and has made it easier for me than it could have been.
Children are very resilient, always in the moment, not yet socialised to narrow their minds in any way and vastly intelligent, all-knowing little beings. We adults can learn a lot from them.
More updates soon...
Saturday, February 5, 2011
Another hospital stay
Oscar was vomiting relentlessly on Thursday so I headed into Emergency with him at about 7pm. He then spiked a temperature so we were in for the minimum 48 hours while they tested his blood for cultures and gave him fluids and antibiotics. His haemoglobin had also dropped and he needed a blood transfusion. Definitely made the right call taking him in.
There were no beds so we ended up spending about 18 hours in emergency. There are no facilities there and we were just in an isolation room without a bed to sleep on. It wasn't too bad though - I climbed up into Oscar's cot and slept as best I could cramped in with my feet sticking out through the bars. There was an eight and a half hour wait time in emergency (which is rare) and a lot of cranky people. We were tucked away in our little room in the eye of the storm but somehow detached from it. We don't have to wait as they usher us into isolation ASAP so Oscar doesn't pick up any of the germs.
We eventually went up to Variety Ward at 1pm the next day. We had our own room, which was good, but we had Oscar's CD player stolen, which was bad. I had bought a special calming CD with positive affirmations and nice sounds for him which he loved and it went with the player. I know the cleaner took it, I know when she took it and how she took it and her and her friend have a good scheme there. It's a shame the hospital care so little to find out what they are up to. I did tell the cleaner I know she took it and she just shrugged, as if to say, "yeah, but there's nothing you can do about it." The nurses told me it happens a lot and to just let security know. Security said to report it to the police as there is nothing the hospital can do. How about some security measures around how many cleaners enter your room, accountability for where they are and what they do?
Arg, it makes you lose faith in humanity. Still, if someone is stealing from a sick kid they must be very desperate indeed. Maybe they need the calming CD more than we do.
We arrived home Sunday. Oscar had completed his blood transfusion and the cultures were negative and as he hadn't had any more temps wo we were allowed home. Yay! Back to clinic Tuesday when he may need some platelets. He has two more nights of intense chemo and the Dr's say his bloods will take a big hit again this week. They expect him to be more his full healthy self in about 3-4 weeks. Then we start maintanence for 18 months. More about that later.
Thanks to everyone who keeps checking in on us and keeping us in your thoughts.
There were no beds so we ended up spending about 18 hours in emergency. There are no facilities there and we were just in an isolation room without a bed to sleep on. It wasn't too bad though - I climbed up into Oscar's cot and slept as best I could cramped in with my feet sticking out through the bars. There was an eight and a half hour wait time in emergency (which is rare) and a lot of cranky people. We were tucked away in our little room in the eye of the storm but somehow detached from it. We don't have to wait as they usher us into isolation ASAP so Oscar doesn't pick up any of the germs.
We eventually went up to Variety Ward at 1pm the next day. We had our own room, which was good, but we had Oscar's CD player stolen, which was bad. I had bought a special calming CD with positive affirmations and nice sounds for him which he loved and it went with the player. I know the cleaner took it, I know when she took it and how she took it and her and her friend have a good scheme there. It's a shame the hospital care so little to find out what they are up to. I did tell the cleaner I know she took it and she just shrugged, as if to say, "yeah, but there's nothing you can do about it." The nurses told me it happens a lot and to just let security know. Security said to report it to the police as there is nothing the hospital can do. How about some security measures around how many cleaners enter your room, accountability for where they are and what they do?
Arg, it makes you lose faith in humanity. Still, if someone is stealing from a sick kid they must be very desperate indeed. Maybe they need the calming CD more than we do.
We arrived home Sunday. Oscar had completed his blood transfusion and the cultures were negative and as he hadn't had any more temps wo we were allowed home. Yay! Back to clinic Tuesday when he may need some platelets. He has two more nights of intense chemo and the Dr's say his bloods will take a big hit again this week. They expect him to be more his full healthy self in about 3-4 weeks. Then we start maintanence for 18 months. More about that later.
Thanks to everyone who keeps checking in on us and keeping us in your thoughts.
Wednesday, February 2, 2011
Update on clinic and brother love
Oscar had his lumber puncture today and he is in the middle of the last two weeks of intensive chemo treatment. He was listless and wouldn't drink his bottle tonight and had a temperature of 37.8 so I will be checking him two hourly tonight. The only time he has ever refused his bottle is when he had mucositis down his digestive tract - I am really hoping its not that again. Send him some healing thoughts, cross your fingers or whatever you can for him.
He was an absolute trooper in clinic today. When I took him into the treatment room to have his anesthetic the nurse said to him, "Hi Oscar, you want to come look at the fish". They have fish in a big fish tank there to distract the kids from whatever treatment they are about to endure. Oscar responded very clearly, "No thank you. I go home see brother." It made them laugh and the nurse said to the other people in the room, "No point trying to trick this one, he's smarter than all of us put together". She knows him well and always comments on how clever he is. Another nurse chimed in to say, "He is a phenomenal little boy. Always smiling no matter what terrible thing we do to him".
Yep, he sure is. Puts us all to shame and shows us how it should be done.
It was also interesting in clinic today as the Cure Our Kids representative, Sandy, was talking to the mums about a new booklet they have produced as a guide to family and friends on how they can help the parents and siblings of children with cancer. They have put this book together because almost all the mums have said that after diagnosis they are too shocked and confused to know what to say when people ask them how they can help and that this confusion continues through exhaustion and lack of sleep. One of the mum's who had finished the treatment cycles and was there for a check up said it is only now months later that she has been able to think of things people could have done to help. Every mum there admitted they had told people there was nothing they could do to help because they just couldn't think properly.
It's just impossible to describe how your brain functions and how simple, practical things are beyond you at many times throughout this process. I myself have had people openly ridicule me for not asking for more help, which only adds to the feeling of anguish that you are experiencing. How anyone can criticise you when you are in this situation is beyond comprehension to me but it is heartening to know that this is the same for other mums in my situation.
So if you are reading this and you have recently been diagnosed please ask about the booklet. It has great suggestions ranging from the obvious, like cooking, to mowing the lawn, doing the washing, taking some food into hospital as a treat and so on. It is always the little things that make the big difference.
Thanks to everyone who has been able to help in any way despite my inability to guide you in the right direction. Thanks to everyone who reads this blogs and keeps us in their thoughts. Again, it is these little things that make all the difference.
Finally, Auden had a special week this week as he started Pre-School. It is great for him to have some fun with friends and more normal activities to do. He loves it but is very, very tired and his only complaint is, "Why can't brother come to Pre School?"
Ah, brother love......
He was an absolute trooper in clinic today. When I took him into the treatment room to have his anesthetic the nurse said to him, "Hi Oscar, you want to come look at the fish". They have fish in a big fish tank there to distract the kids from whatever treatment they are about to endure. Oscar responded very clearly, "No thank you. I go home see brother." It made them laugh and the nurse said to the other people in the room, "No point trying to trick this one, he's smarter than all of us put together". She knows him well and always comments on how clever he is. Another nurse chimed in to say, "He is a phenomenal little boy. Always smiling no matter what terrible thing we do to him".
Yep, he sure is. Puts us all to shame and shows us how it should be done.
It was also interesting in clinic today as the Cure Our Kids representative, Sandy, was talking to the mums about a new booklet they have produced as a guide to family and friends on how they can help the parents and siblings of children with cancer. They have put this book together because almost all the mums have said that after diagnosis they are too shocked and confused to know what to say when people ask them how they can help and that this confusion continues through exhaustion and lack of sleep. One of the mum's who had finished the treatment cycles and was there for a check up said it is only now months later that she has been able to think of things people could have done to help. Every mum there admitted they had told people there was nothing they could do to help because they just couldn't think properly.
It's just impossible to describe how your brain functions and how simple, practical things are beyond you at many times throughout this process. I myself have had people openly ridicule me for not asking for more help, which only adds to the feeling of anguish that you are experiencing. How anyone can criticise you when you are in this situation is beyond comprehension to me but it is heartening to know that this is the same for other mums in my situation.
So if you are reading this and you have recently been diagnosed please ask about the booklet. It has great suggestions ranging from the obvious, like cooking, to mowing the lawn, doing the washing, taking some food into hospital as a treat and so on. It is always the little things that make the big difference.
Thanks to everyone who has been able to help in any way despite my inability to guide you in the right direction. Thanks to everyone who reads this blogs and keeps us in their thoughts. Again, it is these little things that make all the difference.
Finally, Auden had a special week this week as he started Pre-School. It is great for him to have some fun with friends and more normal activities to do. He loves it but is very, very tired and his only complaint is, "Why can't brother come to Pre School?"
Ah, brother love......
Monday, January 24, 2011
Home after 8 nights in hospital
We got home last night at 8.30pm after 8 nights in hospital. It had been one hell of a long day, having started at 6am with a nurse who felt compelled to go on and on about her back problem and how she shouldn't have to take blood from Oscar's line while he is sleeping because it hurts her back so much. She then insisted on changing his lines because they didn't have a hospital policy tap on them. I have never seen one of these taps in eight months so find it surprising that its a hospital policy (so do the other nursed on the ward). Still, I smiled and humored her. Oscar on the other hand did his best impersonation of a psychopath at her when she flipped him over on his back rather harshly and woke him too abruptly. He punched out and screamed and gave her a good piece of his mind and I silently cheered him on. I remind myself the key to this journey. Surrender.
I remind myself of this many, many times as our day went as follows:
The highlight of our day is a visit from Dad and Debbie, who get me fed, spoil Oscar and cheer him up so much he hasn't stopped talking about it.
The other highlight is getting home.
Yay!
A special thanks to Dad, Debbie, Mum and Robyn for all visiting during our stay. Oscar talks non-stop about your visits when we are in there and it really lights up his day. Thanks to Mum also for keeping Auden smiling. Also, thanks to Lisa for visiting me at home and Matilda for your play date with Auden, who keeps asking when he can see you again. Finally, thanks to all of you for any help you have provided in any form - meals, kind thoughts, encouraging chats, texts etc. It keeps us going and we are lucky to have you.
Two more weeks to go of this intensive treatment!!!! More about that later. Got to run...
I remind myself of this many, many times as our day went as follows:
- Oscar gets woken unnecessarily at 6am to have his lines changed despite the fact that they had kept him up til 11pm changing his lines just the night before. On this same night we had been abruptly removed from our room of the previous 7 nights because Oscar was deemed well enough to be in a share room in another ward. I tell myself again and again. Surrender.
- Oscar spent the morning screaming over and over from 6am "bottle" "food" "drink" as he was fasting in preparation for a lumber puncture. I responded to his desperate screams with highly ineffective distraction techniques and strategies. Surrender.
- 10am and blood results show neutrophils not high enough for procedure to go ahead so I ask if I can start feeding him. They say yes. Oscar cheers and gets super excited. 10 minutes later, as Oscar is just about to start his first mouthful of yoghurt the nurse returns to tell us there is a change of plans and "the team" (meaning a bunch of invisible Dr's we haven't seen all week) wish to go ahead despite the low neutrophils. I'm not sure what this means and want someone to explain.
- 11am Dr comes to explain its ok to go ahead as his neutrophils are on their way up and all other bloods good.
- 11.15am a miracle occurs and the porter arrives to take us to surgery. We will also be having a 1 hour drip of chemo followed by 6 hour drip of fluid and they are supposed to start that before surgery (preferably as close to 6am as possible) but they forgot to order the chemo. Surrender.
- Off to surgery and focus on the miracle of this early timing. Get to waiting room and the anesthetist wants to know why I don't have an accredited chemo nurse with me. No idea? Nurse who is with me runs away in direction of our ward. The Dr has a very long list of procedures to get through and can't wait any longer. We get wheeled into surgery and Dr finds out we don't have an accredited chemo nurse or an A1 (an essential piece of paper that tells Dr which chemo is going where and when). The Dr can't go ahead as is injecting said chemo into Oscar's spine during lumber puncture. Dr rings many different departments to chase A1 and nurse. Dr hangs up phone and says to me, " what is wrong with this place that I am chasing these things in the surgery room. I'm a Dr". I reply, "No idea but if you figure it out could you complain to the appropriate people" She replies, "I'd have to find them first". I smile. Surrender.
- Meanwhile Oscar is freaking out. He knows the procedure. He has had more than a total of 16 surgeries in the last 8 months and he knows what happens and in what order and he is usually calm and happy but he knows there is something out of order and he doesn't appreciate it. He lets us all know. This is disappointing for me because if he goes down distressed, he wakes distressed. If he goes down calm, he wakes calm. We both prefer calm.
- Eventually the Dr goes ahead without said A1 or accredited nurse but borrows someone from the next door theatre. I hold him as they give him the anesthetic, give him a kiss and say, "See you soon".
- I am starving so I go to the cafe to get a meal. On my way there I pass a frazzled nurse who is running with Oscar's A1 in hand. I direct her to surgery room 7 and smile some more.
- I always fast with Oscar because I can't possibly eat in front of him. All the mums do. I order my meal dizzy with hunger and anticipation. Wait. Wait some more. They realise they gave my order to someone else and are redoing it. My buzzer goes off and I have to be in recovery as Oscar is back. I leave, still hungry and rush off to Oscar. I find him distressed and still half out of it, a dead weight to hold and no muscle control of his neck but wants to be in my arms and screaming and rolling around like a jellyfish. I surrender.
- We go back to the ward and the nurse is on lunch and I just want the drip to go up so we can get out of here at a decent hour. That doesn't happen. We leave at 7.40pm. Surrender.
- Before this delayed departure a nurse visits to say she has been looking for Oscar's A1 for hours and couldn't arrange a nurse for Oscar's home care in the coming weeks until she found it. I tell her, "Last I saw it was in a nurses hands being run to surgery room 7" She hurries off muttering to herself. I laugh out loud.
The highlight of our day is a visit from Dad and Debbie, who get me fed, spoil Oscar and cheer him up so much he hasn't stopped talking about it.
The other highlight is getting home.
Yay!
A special thanks to Dad, Debbie, Mum and Robyn for all visiting during our stay. Oscar talks non-stop about your visits when we are in there and it really lights up his day. Thanks to Mum also for keeping Auden smiling. Also, thanks to Lisa for visiting me at home and Matilda for your play date with Auden, who keeps asking when he can see you again. Finally, thanks to all of you for any help you have provided in any form - meals, kind thoughts, encouraging chats, texts etc. It keeps us going and we are lucky to have you.
Two more weeks to go of this intensive treatment!!!! More about that later. Got to run...
Monday, January 17, 2011
Minimum 7 days in hospital
We have just been told that we will be in hospital a minimum of another 7 days to treat the central line infection with antibiotics. They need to get it right as the line goes to his heart. So this is what we have to do.
His bloods are all good to go ahead with treatment except his neutrophils, which have been depleted from fighting the infection. They have booked him to go ahead Monday provided the neutrophils have recovered. We will still be in hospital so it means treatment will be in the ward rather than clinic, which is very disappointing as the clinic always do the lumber puncture by age. In the ward you might wait, and have to starve Oscar, until 5pm.
It is what it is and we will manage. The main thing is that Oscar is in good hands. Please keep us in your thoughts. Take care. x
His bloods are all good to go ahead with treatment except his neutrophils, which have been depleted from fighting the infection. They have booked him to go ahead Monday provided the neutrophils have recovered. We will still be in hospital so it means treatment will be in the ward rather than clinic, which is very disappointing as the clinic always do the lumber puncture by age. In the ward you might wait, and have to starve Oscar, until 5pm.
It is what it is and we will manage. The main thing is that Oscar is in good hands. Please keep us in your thoughts. Take care. x
In hospital
We were admitted to hospital on Sunday night - Oscar had a fever of 38.6. He has been in a lot of pain with stomach cramps, diarrhoea, vomiting and fevers. Today they have told us that he has a culture growing in his central line. Basically, there is infection in the line. This isn't great because once it happens once it tends to recur. The delay in final treatment isn't ideal either. Still, his bloods are good so overall the treatment is working. I am angry at myself though, after being so extremely careful with the line, and I let myself be talked into allowing him to play with water on these hot days. Anyway, can't do anything about it now but help him get better.
I also ran into one of the little girls who was about three weeks ahead of us. I was excited to see her to congratulate her on completing her treatment when her mother told me she has relapsed. This is very distressing. The only alternative they have is to try an experimental treatment of a new drug from America and hope she can get through the next couple of months, if so, she will have a bone marrow transplant. I feel overwhelmed for her and her family - to be so close to finishing and to be thrown into another even more dangerous journey. For privacy reasons I won't tell you there names but I am thinking of them all the time.
We are on Variety Ward. They have one nurse for every four patients. Camperdown has one for every two. So we are being patient and going with the flow. There are many people on the ward much sicker than us. We are grateful that Oscar is doing so well.
I hope to be out of hospital before the weekend and will update you then. Keep us in your thoughts and take care.
I also ran into one of the little girls who was about three weeks ahead of us. I was excited to see her to congratulate her on completing her treatment when her mother told me she has relapsed. This is very distressing. The only alternative they have is to try an experimental treatment of a new drug from America and hope she can get through the next couple of months, if so, she will have a bone marrow transplant. I feel overwhelmed for her and her family - to be so close to finishing and to be thrown into another even more dangerous journey. For privacy reasons I won't tell you there names but I am thinking of them all the time.
We are on Variety Ward. They have one nurse for every four patients. Camperdown has one for every two. So we are being patient and going with the flow. There are many people on the ward much sicker than us. We are grateful that Oscar is doing so well.
I hope to be out of hospital before the weekend and will update you then. Keep us in your thoughts and take care.
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