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Posts Tagged ‘glioblastoma multiforme’

It takes a village

February 1, 2012 8 comments

I simply cannot blog about anything until I get past this! On Monday, we got the best news! Barry was told his brain scan looked wonderful! Wow!

A bit of background: 17 months ago, my husband (then aged 38 years) was admitted in to hospital for surgery to remove a brain tumour (glioblastoma multiforme – a grade 4). A few months later, he had a second tumor (this time a grade 3) removed. He has since undergone 2 rounds of radiation and 8 months of chemotherapy (1 more month to go on that). He has handled it all with strength, grace and courage. His blog, injected with his sense of humour and emotional warmth, has kept many informed. The response to his latest post was unprecedented. (You can see it here).

Thank you! The support we have had during the darkest events to hit our family has been phenomenal. They say “It takes a village….” (I think it’s normally “… to raise a child”, but you get my point) it really does! In our case, it has been a global village.

It takes a global village (Source:fadnes.wordpress.com)

Let’s start at the hospital. From the Neurosurgeon who attacked (that’s the only word for it) both of Barry’s tumours with a confidence and arrogance that beat them into submission; to the wonderful Oncologist, who has guided us through each step of chemotherapy taking care to explain all the medical information on the way. Then there are the nurses, the radiation staff, the home care nurse who assisted the challenging Picc line duties! Not to mention the Doctor who took care of the infection. The Medical Team have been (and continue to be) amazing! There is still a round of chemotherapy to come. Following that, Barry will have a MRI scan every 3 months. Yes, the scan was clear of tumours but it is impossible to tell if cancer cells still linger. For that reason, scans will be regular. Here’s hoping we have many more years of “all clear”! For now we are enjoying, and celebrating the moment!

Friends and family, near and far.  From day one, we have been stunned by the outpouring of support, emotionally and practically. I don’t know how I would’ve got through those first two weeks in September 2010 if my brother and his fiancee had not been here on vacation. They were unfaltering in providing shoulders to cry on, logistical arrangements for the boys, meals were ready, everything, in fact, was organised without a word from me. They just instinctively knew what to do and when to do it. Incredible. Friends, understanding of the challenges we faced and how this was compounded by being so far from family, wrapped us in a blanket of compassion and love. Meals were provided, hours were passed in the hospital waiting room, medical discussions were shared. Then there were the friends and family who felt they were too far away to help, yet they provided immense support via email or phone calls. I think I’ve spoken to my Mum pretty much every day over the last 17 months – I’ve needed those chats! Even beyond those people we know, we are learning now of people who have followed Barry’s story and are sharing in this most recent news. People all over the world.

It takes a global village. If there is anything positive to come out of all of this, it is the realisation that people pull together. Family, friends, neighbours, colleagues, acquaintances – everyone has a part to play when challenges arise and every part is essential, no matter how seemingly small. Thank you everyone! Enjoy the moment and celebrate with us!

The Mongans ©Anna Mongan

Fragility

June 8, 2011 8 comments

“Daddy, will I ever get tumours?” Patrick, aged 9 years. Last night in the car.

The question didn’t come out of nowhere exactly; Barry was first diagnosed with a grade 4 tumour (glioblastoma multiforme), in September and is awaiting results of a second tumour that was removed a few weeks ago. The children (we also have Richard, 7) have been amazing in how they have dealt with the treatments Barry has undergone. They have witnessed ups and downs (with some sheltering, obviously) and have asked many, relevant questions which we have always tried to answer honestly but at an appropriate level. This last one however, knocked me sideways. My little boy is coming to terms with the fragility of life – something I am only just working through. This is the most difficult situation I have ever had to deal with but putting myself in the shoes of my 9 and 7 year old superstars makes me realise that I’m lucky that such challenges waited until I was an adult.

Barry explained that he had what was known as cancer. A word Patrick has come across but isn’t that familiar with. He told Patrick that unfortunately anyone can get cancer but there are things we can do, such as healthy eating and exercise, to try to minimise the risk. They also discussed things that are scientifically known to cause cancer, such as smoking or excessive sun exposure. Patrick calmly announced that, if he ever does get cancer, he would hate it to be from anything he had done – did I tell you he was 9? I am at once proud that he is capable of this level of thought but, at the same time, my heart sinks a little to think that a 9-year-old, my 9 year old, has to think with such maturity. I wish this wasn’t a part of their lives more than I wish it wasn’t a part of ours. But I hope that they take strength from their Daddy, his constant optimism, his grace and continuing courage as he deals with all this throws at him.

I watched them run into school this morning, excited for their last day of the year. Their faces bright, ready to enjoy the final day of classroom fun with their friends. Both of them delighted that I was going to get them at the end of the day and save them from a last school bus ride. They truly are amazing.

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