Cocooned from family but blood on my side
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Cocooned from family but blood on my side

Isolation, brutal chemotherapy and hospital food. CHRIS KIMBALL writes about fighting a deadly disease with the help of a cherished bone marrow transplant.

F

acing your mortality is a challenging concept, when you're a 35 year-old father of two it's particularly difficult to accept.

This should be the time when family life is at its best, enjoying the laughter of young children and the chaos they create.

Chris Kimball holding transplant day with cell bag.

Chris Kimball holding transplant day with cell bag.

Instead of family fun, my recent reality has been dominated by doctors and facing a complex medical procedure in the knowledge that should it fail, I could be a dead man walking.

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I am recovering from a treatment called a bone marrow transplant. I'm bald as a badger and look in need of some serious fattening up. A small price to pay. I needed the transplant to combat the effects of a blood cancer called non-Hodgkins lymphoma. In my case, a rare and particularly nasty sub-type of lymphoma.

Chris Kimball supplied pics  (Chris and Kerri early days in bubble).

Chris Kimball supplied pics (Chris and Kerri early days in bubble).

I underwent six months of chemotherapy last year to try to control the disease. The results were positive but there was a high chance of aggressive relapse which would be chemo resistant and potentially fatal.

Thus the bone marrow transplant at Westmead Hospital in Sydney's west. The process involved nine consecutive days of chemo, the strongest and nastiest the body can tolerate. The conditioning process basically carpet bombs your immune system, wiping out any pockets of cancer cells and doing plenty of collateral damage along the way.

It was described to me as taking the body as close to the edge of systemic collapse as possible. It leaves you completely immuno-compromised and as crook as a dog on a good day.

At that point I became a bubble boy, admitted to a controlled ward where you're not allowed to leave or have children visit and full infection controls are in place including plastic gowns for anyone who comes into the bubble.

I was very fortunate to have my older brother Sean as a compatible, and very effective, bone marrow donor. There is a 25 per cent chance of siblings being a match, I have two brothers and a sister and managed to strike it lucky with Sean who is immediately elevated to preferred present status on my Christmas list.

Many of the other people on the ward weren't so lucky, they had to rely on unrelated donors sourced from the bone marrow registry.

One gentleman with leukaemia had to turn to the international registry and eventually found a compatible donor in Germany. The search can be a time-consuming process and many patients pass away before a donor can be found.

I have seen how this process directly saves lives and it highlights the importance of giving blood and registering to be a bone-marrow donor. I'm a little ashamed to have been so ignorant about this process until I was faced with it. You see lots of campaigns about blood donation but it really brings it home when you see people living and dying as a consequence.

The transplant process itself is pretty sophisticated. Instead of the goop from inside the bone marrow being used, actual stem cells from the donor's marrow are harvested. The stem cells provide the building blocks for the new immune system.

On transplant day it was strange to be holding a salmony coloured bag of stuff that may save my life.

The cells were infused into my body just like a blood transfusion and from there it became a game of wait and see. The cells take time to graft to the host body then slowly replicate and form the new white cells which make up your immune system

Unfortunately it wasn't a matter of sitting around thumb twiddling while the process ran its course. The chemo effects caught up with me, leading to dramatic hair loss as well as diarrhoea, vomiting, stomach cramps and headaches. Then things got worse.

I entered the second week post transplant and copped what patients with no immune system fear the worst; infection. I had massive fever spikes which alternated with terrible chills. I found it impossible to eat and sleep became a rarity. It was the worst time of a nasty process and a period of great vulnerability where my system could reject the donor cells and leave me in serious trouble.

It's hard to describe the boredom and frustration of sitting around just feeling rotten, missing my family and worrying about the outcome.

The wacky symptoms continued. I was given intense hydration treatment and became massively swollen, putting on six kilograms in the space of two days.

I was on pills of all shapes and sizes from antibiotics that caused strange hallucinations (at one stage I'm pretty sure I was playing in the centres for the Canberra Raiders) to supplements of all sorts as well as having regular blood and platelet transfusions.

Every day in the bubble I had a blood test where the big interest was my white blood cell count. The count reflects the success of the introduced cells grafting with the new immune system. After 20 days in the bubble my fever broke and my counts dramatically spiked upwards. It's amazing how much optimism a few little numbers can inspire and although there remains a long way to go, the fact that my immune system is regenerating means I can fight infection and I'm on the way to something resembling normal health.

I was finally allowed my freedom after nine days of intense chemotherapy and 24 days enduring illness of all sorts in the bubble. I felt like a jail inmate being granted parole.

I'm not quite out of the woods yet, my immune system is still developing and I remain susceptible to infection. I have to stay near the hospital and receive weekly treatment for the next few months. I am very fortunate to have been provided a unit by the Leukaemia Foundation opposite the hospital. It's a godsend to be able to be nearby but still have freedom to function normally. My wife Kerri has been able to stay at the unit during my treatment.

The Leukaemia Foundation has six such units for patients and their families from outside of Sydney. It's a supportive little community of people who have been through shared adversity.

Unfortunately, there are many more than six families who would benefit from these units at any given time.

Again, I am a little ashamed I did not know the extent of the amazing work of the Leukaemia Foundation until I needed its help. Like cancer advocacy group the Warwick Foundation, the Leukaemia Foundation provides genuine, no-fuss, practical help for people at the very worst time of their lives.

This weekend is the Leukaemia Foundation's big fundraiser; the World's Greatest Shave. I urge you desperately to support the initiative. If these units were not available I'd probably still be in the bubble and it's fair to say I'd be ready to burst.

ACT 7.30 presenter Chris Kimball is on leave from the ABC.

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