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Thursday, June 27, 2013

Check up, immunisations and bribery

Oscar didn’t want to go this morning to see Dr M for his check up and cried and bargained with me for the first half of the trip to Westmead. He asked me to tell Dr M that he didn’t want any finger pricks or any needles. There really is no way to explain away the fact that he was having both today so I did my best at distracting him instead.

When we got there he announced to anyone who would listen (e.g. the entire Oncology Clinic) the following:
“I don’t want to be brave and I don’t want any needles.”

This left a somewhat uncomfortable silence.

When we sat down there was a baby next to us and Oscar said to me, “Well, babies don’t be brave.” So I explained that unfortunately sometimes even babies have to be brave and that he was very brave when he was a baby. This particular baby turned out to be only one month younger than Oscar was when he was diagnosed which surprised me as much as Oscar – it’s amazing how you forget (and a shame that you never do, if you know what I mean).

Then someone from a Church group approached us and gave Oscar a puzzle and a car as a present and started praying over him. Oscar thought the present was great but was a bit confused by a stranger kneeling beside him and saying his name over and over in prayer.  The girl next to us was also being prayed for by another person from the same Church group and she was somewhat evangelistic in her approach. Oscar jumped into my arms and said, “That Lady is scaring me.” So we headed for the play room.

Dr M came and got us and gave us good news. His bloods are good and we now move to two monthly (instead of monthly visits)!! This is another step forward we are very grateful for. In the last 3 years Oscar hasn’t ever gone longer than 4 weeks between visits so it’s exciting.

Then we headed to the treatment room for his immunisation needles. We were in the room with the big fish tank which also happens to be the room they did all those bone marrow aspirations and lumber puncture procedures. I lost count how many – but lots! As soon as Oscar saw we were heading there he LOST THE PLOT. The less said about it the better. As awful and un-fun as it was he wasn’t backward in asking for a treat afterwards, remembering that there are ice blocks in the freezer. He knows how to work the system – he also got another present from the nurses and a lolly pop. Seriously, no wonder he uses bribery as his main ‘negotiation’ tactic.

He fell asleep in the car on the way back and when we got home he woke up and screamed at me in an absolute rage that he hated me and he told me he didn’t want any needles and that “When Daddy takes me he doesn’t make me have any needles.” (this is a bit of a low blow as Pete only took him once last month when I was vomiting but hey, I’ll be the bad cop any day if it means Oscar gets to be healthy).

I may be in for a hard afternoon with Oscar being so angry with me but it’s all good. He can blame me all he likes. I’m just so glad to be heading into the rest of winter with him protected from all those serious contagious diseases which posed a real threat to his life during his treatment.

So, we are grateful to move one more step forward on this journey. Hooray!

Thanks for checking in on us and love to you and all your families. Much love, Cindy x

Saturday, June 22, 2013

Three years....

Three years ago today we received Oscar’s diagnosis. We’ve come such a long way and yet that moment is so close below our thin skins at times.  It is not who he is or who we are as a family but it is definitely a part of him and us and the energy that makes up the space we inhabit.

I have nicknamed myself ‘the crying lady’ this week. Somehow this makes it feel lighter than it is or perhaps less discombobulating. I’m all at sea, my mind unable to grasp facts, details slipping away through the strangeness of my minds inability to grasp them. I forget important dates for school, pay the wrong bills to the wrong accounts, get angry at myself that I am so ineffectual and then, randomly and at inconvenient moments, cry a lot.

Much of my tears though are a happy sort of crying as Oscar is growing up so much and I am rendered emotionally senseless by the sheer amazement of it.

Yesterday we had a magic day together. We dropped Auden at school and then came home as Oscar wanted to get dressed in Auden’s soccer gear, including and especially his studded boots. Then we went out, boots and all, to a cafĂ© and had a special treat of banana bread and a milk shake. When we got home I asked Oscar to choose a book to read and to my amazement he chose the book we got from the Leukaemia Foundation, ‘Joe has Leukaemia’. In the past, when I have tried to read this book to him with the idea that it might help him process his experience he has screamed at me violently and pushed it away. So I was surprised and the timing was somewhat loaded but I forged ahead. This is how our reading went.
Me (reading the title page): “Joe has Leukaemia”
Oscar: “I had that.”
Me: “That’s right, you did.” Then I started to read the book, taking Oscar through the story of Joe feeling sick, having tests, being diagnosed, staying at hospital and how it made everyone miss everybody else and how Joe just wanted to go home.  Then we came to a page with an explanation of what Leukaemia is with cartoon character red cells, white cells and platelets. To my surprise Oscar pointed at them in turn and said:
Oscar: “Red blood, White blood and Pikelets (meaning platelets of course).
Me: “That’s right, buddy”.
We progressed with the story until we got to the page with pictures of Joe with a central line.
Oscar: “I had that.”
Me: “You sure did.”
Oscar: “Yeah, and Z has that too.” (referring to Auden’s friend who is currently going through chemo).
Me: “That’s right, buddy, just like Z.”
Then I turn the page and Joe has lost all his hair.
Oscar: “Just like I did and Z too.”
Me: “Yeah, and then it grew back, didn’t it?”
Oscar: “Yeah, and Z’s will too.”
Me: “It sure will.”
Then we get to the part of the story where Joe is well again.
Oscar: “He’s all better, just like me.” In his excited voice.
Me: “That’s right.”
Oscar: “And just like Z.”
Me (trying to keep the crying lady at bay): “Yes, we hope so, buddy.”
Oscar: “Yeah.”
On the last page of the book Joe says he wants to be a Dr when he grows up so he can help children like himself. Then it ends with the question: “What would you like to do when you are older?”
Oscar:  “A Fire Engine,” with much enthusiasm.
Me: “You mean a Fireman?”
Oscar: “Yeah. And when you grow up I want you to be my mummy.”
Me: “OK, buddy, it’s a deal.” As I say this the crying lady takes over against my best efforts to keep her at bay but Oscar fortunately doesn’t notice because he’s already moved on to playing with a toy and is all done with the story.

I share this with you because in a short space of time Oscar sums up what my limited linguistic ability cannot. He demonstrates the in-the-moment resilience that a survivor must adopt and yet with the knowledge that it is a shared experience. For as we are so fortunate that Oscar has finished treatment and is doing so well, we are very aware of those who are still going through it. Our story is part of a greater story and especially so this week when we personally know several families who are having big weeks in their own journeys regarding this illness and the impact it can have on the bodies and minds of those inflicted and their loved ones.

Today is a strange day. It’s like any other day. It’s a special anniversary of a moment I don’t want to relive. It’s a celebration of how blessed we are. It’s a reminder that others are still fighting hard and that even others have been less fortunate. It’s a drop in the ocean that is life. It’s whatever we choose to see it as in any given moment.
Mostly, though, it is an opportunity. As every moment of now is a moment of opportunity. And so I wish to take the opportunity to say a deep thank you to everyone who has journeyed with us, helped us along the way, sent us positive thoughts, prayed for us, held our hand or just helped us heal. We send our deep gratitude to all the staff who have worked so hard and put up with the crazy lioness version of myself that prowled up and down the hospital ward with worry and terror. And to the other parents who journeyed alongside us and gave us tips and cups of tea along the way.

The other night when I put Oscar to bed he said, “Mummy, I have a little heart but everyone is in my heart, except X (a child at preschool) who is mean.”

This made me laugh but it’s also very wise and true. You are all in our hearts, forever and always. Thank you, thank you, thank you.

Here are some photo’s that capture the magic that is Oscar aged 4½ and going strong. 

I love you to the moon and back, my special family.

Thanks for checking in on us and love to you and all your families too. Love Cindy x