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’.

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. :)

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.

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

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...

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.

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......