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Wednesday, July 28, 2010

Oscar's in Remission

Oscar is in remission!

What does this mean? Well, from a medical point of view, it means at this point in time there are no blast (leukemic) cells in his bone marrow. This is generally what they need to see at this stage in his treatment. It also means he stays on the standard treatment protocol. This is a huge relief for us as we are glad for Oscar that he will not have to have any more aggressive treatments than the ones he is currently enduring. It's hard to imagine something more aggressive than what he is currently going through so we feel very grateful. Also, the long term side effects are less severe, so all in all, its good news for Oscar.

So now we are focusing on keeping Oscar in remission and doing everything we can to keep him out of hospital, healthy, happy and living a relatively normal life. His temperature has settled and we feel confident that he is coping today with the new chemo treatment. He really is amazing and resilient and keeps fighting back and we are very proud of him.

Being at home isn't just about convenience - he is happier here and when he is happy he is healing. Since we came home he has continually improved so we are doing all we can to keep him here.

Whatever the statistics, the medical science and the comparative analysis the doctors wish to throw our way we know that Oscar has the fight in him to get through this. It is nice to know that he is staying on the least invasive treatment and in this moment of "now" we feel incredible gratitude for this.

There are many young children going through similar procedures and treatments for cancer and wishing for some positive news so we send them and their parents all our thoughts and feel deeply blessed that today is a good day for Oscar.

We also thank you again for your thoughts and prayers - people power works and Oscar is lucky that so many people are sending him positive vibes. Keep sending them his way please - he is a good receiver.

Tuesday, July 27, 2010

No real results yet. The Doctor's know enough to deem it suitable to go ahead with the next phase of treatment but don't know enough yet to explain Oscar's prognosis, risk category and long term effects of whatever treatment protocol will be applicable to him. Maybe tomorrow I will hear more.

We have had two very long very traumatic days in hospital. The lumber puncture and bone marrow biopsy required anesthetic again and the whole starving your child and waiting for the Doctor's to take him into surgery. Arrived at hospital 7.30am, in surgery 10.45am. One child had to be sedated as she was banging her head on the floor screaming for food. I wish they had of been kind enough to sedate the mother, and all us other mothers while they were at it! I am very grateful to Oscar for handling it so well.

He's had a new chemo today which requires a 6 hour drip of fluid to protect the kidneys from the dangerous side effects. It can cause fevers and flu like symtoms. His temperature started to rise but stopped at 37.6. If it reaches 38 tonight we will be back in hospital for a week as they cannot guarantee its a reaction to the chemo. Fingers and toes crossed.

The new phase of treatment is overwhelming and as he is still transitioning from some of the medications from the induction phase we are having to wake him at night to give him his oral chemo. This is the first chemo we have had to administer ourselves and its not the most comforting of experiences. If we are still home in the morning the nurse will be coming to visit.

Next week we are in hospital Monday for another lumber puncture and another anesthetic. Tuesday in hospital for chemo and, all going well, the nurse will be out each other day of the week.

Oscar hasn't stopped crying for the last three hours on and off and appears to be in discomfort with this new medication. I have just been patting him for the last couple hours. Pete is now having a go. We may have to just take him in to hospital. If so, we will try to update you when we can.

As always, we are grateful for all your support and while we are overwhelmed beyond imagination right in this moment of "now", I know that all these side effects, traumatic procedures and nightmarish waiting periods are just temperory. Tomorrow is another day and the next "now" is bound to be full of promise.

Thank you for taking this difficult journey with us.

Friday, July 23, 2010

Oscar has a big day coming up on Monday

Today we went to clinic for the last chemo of the induction phase of treatment. This means no more horrible needle in the muscle - Oscar says hooray! The chemo in the next phase of treatment is all given to him through his central line, which is painless and simple. Also, we are slowly phasing out the steroid which has caused him so many discomforts and his high blood pressure. So we are grateful to be moving onto the next phase of treatment.

Today the Doctor advised that the bone marrow lumber puncture on Monday is the crucial one. He expects and needs to see less than 5% blasts (leukemic cells) in the bone marrow. Please keep us in your thoughts and prayers for this result or better for Oscar. The Dr thinks he should have results as soon as Tuesday.

We will be at the hospital at 7.30am Monday and provided there are no emergencies that morning Oscar should have his anesthetic not too long after we arrive. Depending on his blood work the Dr's might also start his new chemo regime on Monday.

The next phase of therapy requires one full day in at the hospital at the beginning and the end of the month long treatment. This is because one of the drugs they are giving him requires a 6 hour drip of fluids to help his body cope. Then, the next three days of each week a nurse will come out to our home to administer the rest of the chemo treatment. The Doctor is spending more time with us on Monday or Tuesday to explain this more fully - so I'll let you know of any updates.

Keep us in your thoughts and prayers and we will tell you as soon as we know what the outcome is. We have a good feeling its going to be good news.

Wednesday, July 21, 2010

Children Learn What They Live

As we slowly wean Oscar off the steroid drug he is becoming active. For the first time in 6 weeks today we saw Oscar crawling around, rolling off the lounge and crash landing on his brother. I can’t explain what a magic moment this was. The two of them playing together and laughing after weeks of not being able to connect the way they usually do. Auden was delighted and kept saying, “Mummy, baby happy”, pronouncing it loudly and proudly (a wonderful improvement from, “Mummy, baby crying, baby sick”). They giggled and it was like Oscar had never been sick.

They both seemed so grateful to have each other to interact with again. Auden was very caring and loving, asking Oscar if he was ok and patting his head when they tumbled and crashed into one another. Oscar just laughed and didn’t show a hint of pain, consumed so much by the joy of brother love. They ended the day with their first bath together since Oscar got sick all those weeks ago and it was like a true coming home for all of us as a family.

We are very proud of our little boys. Seeing Oscar today moving and trying to use his aching bones reminded us of his incredible resilience. From very early on in his life I have always said that whatever he came here to do there was nothing that would stop him. Our paediatrician nicknamed him, ‘the can do kid’, because that is his nature. We have every faith in him as a little person with great tenacity to do all he can to fight the disease he has been inflicted with. Every day we see his strong spirit in the way he copes with the medical procedures and other nasty things on this journey to health - and still he laughs, he smiles, he shines. And today it was so precious to see him 'doing' again.

We are also very proud of Auden and his ability to care and love and show empathy in his own unique and clever ways. It hasn’t been an easy time for him and he has been very confused as to why baby won’t play with him, why mummy and daddy have been away so much and why Oscar has been crying all times of the day and night. He has handled it beautifully.

We are very grateful to be so blessed.

Here is a quote from one of the text books the Doctor's gave us to guide us through the journey. You probably already know it but it is a favourite of mine:

Children Learn What They Live
If a child lives with criticism, he learns to condemn.
If a child lives with hostility, he learns to fight.
If a child lives with ridicule, he learns to be shy.
If a child lives with shame, he learns to feel guilty.
If a child lives with tolerance, he learns to be patient.
If a child lives with encouragement, he learns confidence.
If a child lives with praise, he learns to appreciate.
If a child lives with fairness, he learns justice.
If a child lives with security, he learns to have faith.
If a child lives with approval, he learns to like himself.
If a child lives with acceptance and friendship,
He learns to find love in the world.
- Dorothy Law Nolte

Monday, July 19, 2010

Doctor's Report

The Dr today confirmed that the last bone marrow biopsy showed a dramatic reduction in blasts (leukemic cells - immature blood cells which rapidly divide and crowd out the healthy cells) in Oscar's marrow. This is what they expected to see. So we are on track and heading in the right direction. The big important bone marrow biopsy will be on Monday - this is the one they are waiting on before they can give us a clearer prognosis.

So please keep the prayers and positive vibes coming our way as we get closer to Monday and the following weeks of waiting for the results.

Also, the fact that Oscar hasn't lost his hair doesn't mean the chemo is not working - about 5% of people don't loose their hair. He may still do so though.

Blood results:
Hb: 114 (almost in normal range of 120-160)
WCC: 2.0 (below normal range of 5-10, but chemo kills white cells so this is to be expected)
Neut: 0.2 (still neutropenic)
Plts: 244 (within the normal range of 150-300)

We are grateful for every kind word, prayer and thought that you have for the greater good of Oscar and his journey to health.

Sunday, July 18, 2010

Oscar's Update

No results from the biopsy yet, but as some very wise and kind people have said, it just gives more time for the positive vibes to build up for Oscar. So keep thinking those positive thoughts and saying those prayers for Oscar to go into remission as early as possible, as this is the greatest indicator of a good prognosis.

This week we are in at the clinic again on Tuesday and Friday (for another biopsy). Clinic days are endless waiting and are hard on Oscar because he doesn't get his day sleep and he gets nasty needles. The good thing about Clinic, though, is that we get to meet lots of other people in similar situations and hear their stories. This is a great opportunity to hear more about the journey as Dr's really don't tell you much unless its absolutely necessary. Families can give you the practical tips that you really need to adjust to your new 'normal' (never liked that word anyway). It also reminds you how grateful you are because there are a lot of people in worse situations than your own. We wish each and every one of them good luck on their journey's to health.

Oscar's weekend was interupted by a quick trip to the hospital, after we were chatting to our new neighbour, who told us her daughter had chicken pox. Any exposure to chicken pox requires a Varicella Zoster Immune Globulin injection. Even though we hadn't been exposed to the child, just talking to the mother was deemed by the Dr to be sufficient to warrant a needle. Poor Oscar, just being neighborly did him no favours. His bottom is so bruised from the chemo injections they had to put it in his little thigh. He kept saying "car, Daddy, brother, home" - can't say I blame him. We were all glad we didn't have to stay in there.

We will keep you updated after our clinic visits and we hope you all have a good week. Send us all your positive vibes please. :)

Monday, July 12, 2010

No Biopsy Results

OK, a quick update. No biopsy results as our Dr is away this week and they were short staffed and it was all a bit of a rush and confusion in there today. I have put in a request for someone to go through them with me on Friday but it may not be until next week when our Dr returns.

Thanks for all the positive thoughts and prayers and please keep them up for us.

Oscar will have yet another biopsy next Friday so they may wait to go through everything together then.

His blood results were good today, except for his neutrophil count which fell to 0.1. Any neutrophil count below 1.0 is considred neutropenia. So he is as low as he can go before they have to put him in hospital to isolate him from infection. Blood pressure was up again and they will be concerned to check that on Friday and if its not better may need to look at another hospital stay or an adjustment of the drugs. He starts to taper off the steroid medication next Tuesday so then the blood pressure issue should resolve.

For those who are interested the rest of his blood results, here they are:
Haemoglobin: 117 (normal range is 120-160 - but don't need transfusion until it drops below 70)
White Cell Count: 1.5 (normal range 5-10 during chemo treatment this is expected to drop)
Platelets:118 (normal 150-300 but no transfusion until they drop below 20)

Thanks again and lots of love to you and all your families.

Sunday, July 11, 2010

Your Help Please

I believe that the thoughts and words we choose to focus on or put energy into have a powerful effect on our lives. Studies have proven that collective meditation, prayer, positive thoughts or affirmations can make a real difference in the circumstances of our lives. The more specific you are with your thoughts, words, prayers, and desires - the more you are likely to manifest the specific outcomes you are desiring.

Tomorrow we will be getting the results of Oscar's bone marrow biopsy and current research shows that children who go into remission in the first 4-6 weeks have a better prognosis.

So, whatever your belief system, could you please all take time out at 7pm Monday 12th and either think a positive thought for us, prayer for us, or send some positive energy our way. It has been shown that if you all do it at the same time the collective power of your consciousness is more effective.

Insert your own belief system - I have no prejudice for any particular religion, philosophy or approach - they all lead to the same positivity as far as I am concerned.

Please try to be specific in your thought/prayer/meditation, for example:

"Oscar's bone marrow is clear and he is in remission"

This is something very real and very practical that you can do each night at 7pm for us or whenever you remember.

Listen. I believe everything we dream
Can come to pass through our union
We can turn the world around
We can turn the earth's revolution

We have the power
People have the power

Patti Smith

Many Thanks

We would like to thank everyone who has had the courage to call us up and give us their love and support. I know it is hard to know what to say – we don’t know what to say either – but we are very grateful for everyone for making the effort to keep the conversation going. Your words ensure we are never alone on this journey. Emails, comments on the blog, phone conversations and texts have kept us going – so many, many thanks.

Thanks also for all the prayers, positive thoughts, meditations and energy you have all been sending our way – I believe they all make a difference and they mean a lot to us.

Thanks also to everyone who has cooked food and offered support in any way we need it. We are very grateful for every little thing you do that helps us.

Friday, July 9, 2010

Good News!!

We were discharged from hospital at 4pm today!! Hooray and a happy dance and oh my god what happened to our life!! Just 17 days ago I took Oscar to emergency thinking he had an ear, nose and throat infection. That was one long trip to emergency and it is only once you leave the bubble of hospital that you really start to process what has happened to your little family.

Pete and I, wine in hand, just realised that we have never had a chance to have the conversation: "Our sons got Leukeamia.". We literally have not been alone for more than two seconds and have had too many procedures, nurses, Drs and other duties rushing us through this crash course in our new reality to have had time to have any discussions about it.

So, yes, we are delighted to have him home and smiling and eating dinner with his brother. Oscar says, "My brother", over and over. Auden is overwhelmed and completely ignored Oscar like he didn't exist but that will change again with time.

Anyway, I'm going back to my wine and leaving figuring out the truck load of medications and the other realities that await us until tomorrow. Tonight is a night to celebrate!!

Wednesday, July 7, 2010

What is Oscar's Life Like in Hospital?

Given that visiting is difficult I thought I'd share with you some of what Oscar's days are like so you can still feel connected to him during his hospital stay.

On average Pete and I give Oscar between 15-20 syringes of medicine every day. Oscar hates this but is very good compared to a lot of the little kids in this situation. The Dr's say this can be one of the biggest hurdles for families - getting the medication in. So we are very grateful Oscar is so tolerant of us pestering him with them so constantly.

The main medication is a steroid that has a number of side effects. He takes it three times a day. It is the cause of his high blood pressure. It also causes him to be starving hungry every minute of the day and night and gives him terrible mood swings. The nurses affectionately call this "roid rage". He gets very agitated and cranky at times and there is nothing you can do about it. He throws himself around and hits out at everyone around him. Then, just as quickly as the rage hit him he is suddenly overcome with the smiles and loves everyone, then in another flash he will flop down on the bed and start snoring. This is bizarre and disconcerting but we are trying to have fun with it where we can.

On top of the steroid, blood pressure medication, medication to stop him getting a stomache ulcer from the steroid, medication to help him with constipation (side effect of chemo), medication to prevent infection and a few other medications - we also have to wash his mouth with a mouth wash four times a day (this is to try to prevent mouth ulcers from the chemo but is no guarantee that he won't get them) and some nilstat also 4 times a day to prevent yeast infection from all the antibiotics he's having.

Then there are the procedures. There are regular bone marrow biopsy's in these early stages - that requires an anisthetic and needle taking out some of his marrow to test for blast cells. And then all the regular daily observations of his status.

These include blood pressure checks, temperature checks and monitoring of how much he is eating etc. About every two hours he has his blood pressure checked. He hates this and the only way we can get a good reading is to give him a bottle while the nurse does it. This means he is having two hourly bottles as well as all the food! This goes through the night as well. Then there are the Dr's who do regular checks to listen to his chest and generally check him out. Plus there are mummy and daddy giving him drugs on a much too regular basis. All this means that his room is like Pitt St and he is being touched constantly.

When the nurse is finished now he says at the top of his voice, "All done." "Bye" and waves. In other words, bugger off and leave me alone!! The nurses think this is adorable. Yesterday he had a particularly full on day (a needle and an operation thrown in on top of all the usual things we do to him). When the nurse came in with the needle he sat up in bed and said "All done." "Bye" and waved at her even before she got through the door. It was very funny.

His words are coming very fast. He has always been a good talker for his age but the circumstances are giving him a desire to learn even faster. He's not silly and if he can find a way to tell those nurses to go away he will. He has a special relationship with one of the nurses, who is like an angel walking around in a human body. He even blows her kisses and will let her do just about anything. Her name is Kate and we are very grateful to her for giving him some moments of joy along the way.

Aside from that, when he is not hooked up to an IV stand we take him for walks in his pram around the hospital. He hates being in his room and pretty much wants to go for walks constantly. I think we know every inch of the hospital, like its tatooed on our souls.

I have some photo's to put up but Auden has just woken and I have to run. More soon.


The hospital asks that we keep visitors to a minimum as there are numerous children on the ward fighting life threatening illnesses and most of them have no ability to fight off any germs that we may inadvertantly bring with us.
If you do visit the ward you will notice a lot of signs asking you to wash your hands with anticeptic before entering Oscar's room and upon leaving. There is a bottle of anticeptic outside each room for you to use.
The Dr's also request we keep handling of Oscar to a mimimum while ever he is neutropenic and unable to fight infections. His neutrophils are still sitting at 0.2 (well below the 1 required to fight infection).
To be perfectly honest even if you did visit us you would have trouble spending time with us this week as it has been a constant barrage of Dr conferences, nurses observations, procedures and protocols. We have barely been left alone for a minute and Oscar is very fed up with all the nurses and Dr's touching him, not to mention, inflicting pain.
So, we are sorry if you feel disappointed that you cannot spend time with him but there will be plenty of time ahead when the initial intensity of getting the disease under control is lessened.

When we come home they have asked us to set up the same situation he has in hospital. I have put some hand disintectant at the front dooor so if you do visit please wash your hands with it before entering. Also, if you feel you may be getting sick please stay away and please ring us before heading over here as there are a lot of medical things Pete and I are responsible for once he is home and we may be busy trying to get our heads around that.

The Dr's remind us that all of this is a temporary necessity at this time. It is new for us too and we thank you for respecting our new circumstances.

A Quick Overview of What We Have Been Told So Far

The Dr's have given us a text book on Leukeamia, some written handouts and a pile of papers detailing Oscar's treatment protocol. I don't have them here with me to refer to so I'll just give you the basic overview of what I can remember so far.

Oscar has the more common type of childhood Leukeamia, known as ALL. The prognosis is relatively good, with about an 85% recovery rate. The head Dr in charge of Oscar is Mary Bergen. Both Pete and I like her manner - it is straight up, no messing around, hard truth. When she told us the full diagnosis she was very clear that while the fact that he has ALL is relatively good in the world of Leaukeamia, it is pretty much still one of the worst things you can be told as a parent and that the journey Oscar and all of us is about to go on is not an easy one. We really appreciated how up front she was and she also managed to make us laugh (a sense of humour essential!!).

The two year treatment protocol has different stages that are adjusted along the way based on how Oscar is responding. The first six months are the most intense and very crucial. The first two months are particularly important and children who go into remission in the first 4-6weeks have a better prognosis. So, the first two months are very intense, the middle two months slightly less intense and the final two months are again very intense. During this six month period there will be visits to the clinic as an outpatient for chemo a minimum of twice a week, plus regular bone marrow biopsy's to check his progress. On top of that, you can expect some hospital stays. We have a list of situations where we have to bring Oscar into the hospital immediately, the most common one is whenever he gets a temperature of 38 or more. This is because he can't fight infection and will need to be isolated and put on IV antiobiotics.

After the initial intense six months, the treatment is primarily outpatient based with trips to the clinic being less often - about once every 3 weeks. Again this can all change if he gets a temperature, if something happens to his central line, if he refuses to eat and a number of other situations.

After the two year period, if all has gone according to plan, Oscar will then have regular tests and checkups to ensure that he is still clear of the disease. If, after 5 years, there are still no signs of the Leaukeamia he is considered cured.

Having said all that, the best way for us to approach this is one day at a time. The Dr's have indicated that when we do get Oscar home we will have a big adjustment period while we figure out what our 'new normal' is as a family. They say it is important to try to go back to Oscar's routine as much as is possible around the requirements of his medications. It is also important to treat him normally, discipline him the same and so on - again, as much as possible without putting him at risk of infection.

If Auden gets sick we have been told we have to try and quarantine him, although they realise this is difficult. Same goes for anyone else who gets sick. In this first six months particularly we need to try to be vigilent with protecting him from picking up infections. Some children are lucky and have hardly any hospital stays as they manage to avoid any illnesses but you can only do the best you can.

OK, that's all I can remember at the moment. I hope it gives you a bit more information and a vague idea of what to expect.

Wednesday 7th

Oscar had a very hard day today. As part of the treatment protocol he is taking a steroid that makes him very very hungry. Like crazy eating all day long and waking numerous times in the night to feed as well. Because he was having another bone marrow biopsy today under anisthetic we had to cut off food from 2am. This resulted in a very cranky, crazy, angry Oscar. He was screeming at me for food and wondering why I wouldn't give it to him. At one stage he was so beside himself he crashed his head badly on the sides of the cot. It was absolute torture as a mum not to be able to give him food when he was screaming for it.
Eventually, at about 11.30am they took us to the clinic for the biopsy (seriously, the longest wait of my life). The Dr was about to start the anisthetic when she came running in saying stop everything, he hasn't got enough platelets. The nurse who had sent us to the clinic had failed to notice his platelets had fallen below 50 and for the purposes of an operation like a bone marrow biopsy it needs to be above 50 to prevent bleeding out.
So we were wheeled out and Oscar was put on another drip of platelets for a half hour or so before finally being wheeled back in, put under, and then they did the bone marrow biopsy, changed his central line dressing, gave him a shot of chemo with a needle into the muscles in his bottom and I think they also took some spinal fluid to make sure there are no blasts there.
I waited for him in recovery, then we hightailed it back to the ward and started eating eating eating. He was beside himself with joy once the food started coming his way.
The Dr who did the biopsy did sneek out and tell me the bone marrow was clear but I will wait to fill you in on the full outcome when all three Dr's give us the results in the next couple days.
Keep thinking positive thoughts. We are. xx

Monday, July 5, 2010

Tuesday July 6th

Oscar's blood pressure is still up so we can't come home yet. They are increasing the dose of the blood pressure medication to see if that helps. He also had a temperature of 38 yesterday so they started him on iv antibiotics and have taken blood to culture and see if he has any infection in his system. He is still 'neutropenic' (not sure I have spelt that right but hardly matters) - which means he has no ability to fight infection so they have to treat any temperature very aggressively.

Anyway, long story short we are still living in the hospital (yesterday I accidently referred to it as "home"). We are taking shifts, swapping each night, so that one of us is always in the hospital while the other is at home with Auden. He is missing baby badly and all over the shop with his emotions (how could he be any other way?) so we are trying to minimise his trauma by always ensuring one of us is also with him.

There are many things we have absolutely no control over. All we can do is control how we respond.

I will update you when I can.