Wednesday, March 28, 2001
Subject: Battles?

James is very well today. For two weeks he has been striding forward, seizing each day with the exuberance of any happy and active seven year old boy, not the slightest hint of disease, full of fun, looking to the future, life is good.

The terrifying pain he suffered a few weeks ago, and the assault of the ICE chemo has been forgotten. It is not possible to look at James and think terminal cancer.
But Rebecca is right. At bedtime she told me "I'm really scared because James has a very rare kind of children's cancer and most of the kids who have it die."

The CT scan of James head, done after the ICE chemo, shows that the old lesion at the back of his skull is still there, dormant perhaps for the moment, but threatening at any time to spread to the brain. Of course there are many other sites of the cancer throughout his body, but this spot is of the most immediate concern. So, in a pre-emptive move, Dr Baruchel has advised a chemo not previously used for neuroblastoma but for cancers of the brain, called temozolomide, or temadol for short.

Getting a chemo to cross the blood brain barrier can be a problem, but temadol can do this, and James began taking it a week ago, four pills a day, for forty two days. Low dose, metronomic, no side effects, no nausea, no hospital visits. Janet warned us about one possible side effect - fatigue. Observed side effects in James: increased stamina, less sleep required.

James always seems to be different. So once again we are experiencing the neuroblastoma rollercoaster, this time the good bit. I guess the Birrell family have seized this moment to move ahead.

Rebecca and Pam are moving into the final rehearsals of "Snow White". We went to the maple sugar farm. We went horse riding. Pam and I had a night off at a wonderful bed and breakfast. And the big focus has been the the launch of the James Fund. It involved us all, and in two short weeks we had an event, a website, $40,000 in donations, and Ben's first speech in public. The launch night was supposed to be about money, but instead it was all about courage, hope, determination and love.

Who could forget the scene where James took the mike and said "Ladies and gentlemen, boys and girls, this is my friend DR Baruchel!" and then two people running across the stage towards each other, James jumping into DR Baruchel's arms, big hugs, big smiles, traveling the road together not as doctor and patient but as friends facing a common enemy. DR Baruchel spoke about "living with the enemy", and asked the question "Do we have to use a nuclear weapon to destroy a mosquito?". Much of the experimental treatment James has received, such as the mouse medicine, is designed to avoid the major side effects of standard treatments. And then DR B had some closing words for James: "Together we are fighting cancer. You are fighting for you. You are fighting for the others. You are helping us fight cancer. We need you James. I know there is a house in heaven for you, but you know, somehow I think it's not ready yet...there have been delays in the construction...you know there are always problems with the contractors. Stay with us." We are so lucky to be under the care of DR B
and his team.

My friend John asked me a question: "What are your battles?" A very helpful question. I think my quick and short response was:

1. Get James though cancer
2. Get Pam through cancer
3. Keep Rebecca and Ben nurtured, growing, fulfilling their potential.
4. Take care to look to matters of the soul

My battles do not include my career right now, although I want to do the best I can in my various jobs. And the battle does not include RRSP's and net worth, although I want to keep the family fed and clothed with a roof over our heads. The battle question is good because living with the enemy means always asking the question "what is important right now?" I think in a different life I recall the idea of waking up in the morning and
thinking idly "What shall I do today?". Now the question seems to be "What shall I not do today?". Time is so short for James, and we are all learning to discard what is unessential.

I forgot to tell John about one other battle: I am trying to train myself to sleep through the night. Is it a DR Ferber I need to see?
Perhaps my children can tell me.

Syd

PS Don't forget to visit the James website at www.jamesbirrell.ca I
love Rebecca's entry in the guest book there: "Even if you are annoying I
still pray for you every night."

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