A Sense of Deja Vu

It was a very heart breaking farewell between Isabel and Edward on Tuesday evening with the usually very even keeled and composed Isabel screaming uncontrollably as we reversed out of the driveway and Edward, with a delayed reaction crying most of the way back to the hospital. I’m not sure if it makes it harder or easier having been through this once before and knowing what is potentially ahead. Like most things there are pro and cons for both.
Yesterday, was definitely harder watching an obscenely high dose of methatrexate (compared to last time) being infused over a 24 hour period knowing that is the nasty stuff that caused the extreme mucositis (sores which began in his mouth and travelled all the way down internally to his bottom) in the first round.

Unfortunately we’re also going thorough the  anxiety he has whenever someone new from the family arrives as he senses a change over in the shift. There’s no point delaying the inevitable and the departure usually a quick one. It’s very difficult to walk down the hallway hearing the muffled cries and shouts for “Mumma, Mumma” and knowing there’s nothing really I can do and it’s the way it just has to be. I know after a few minutes it all settlesand he is distracted-sometimes easily, other times with more hard work.

A big pro for little Tommy is his favourite nurse with whom he a has penchant for pinching on the bum is back from holidays.

This week they will starting tissue matching from the immediate family to see if they can find a suitable match should he need a bone marrow transplant. The need for a bone marrow transplant won’t be decided until at least 3 months or really once he has completed these 6 days in hospital ( with a 3 weeks break in between) for 3 times. It’s also likely that there may be breaks during this time depending on his health and as to whether they need to defer or chemo or not.

The news is not all doom and gloom and here’s another good reason to support cancer research to who ever or however you can. The test that indicated that not all of Ed’s Leakumia has been eliminated is new and improved. The concept is the same but previously they used to look at 100 blood cells under the microscope to look for any what they call Residual Leukemia Cells-MRD (Minimal Residual Disease). As of March this year they have the technology to look at 1000 blood cells under the Microsope which gives them a higher and more accurate chance of identifying the risk of relapse. This means that because Edward’s results were only a small amount of MRD previously they may have missed it and he may not have been classified into the High Risk category which means a higher risk of relapsing down the track. It’s all part of the way the the treatment of cancer is moving towards a more individual and tailored protocol for each patient depending on their progress.

Below are a few cute pics of the little guy enjoying his two weeks at home. Here’s hoping his break from Isabel’s After School Care is not too long and the road not too bumpy.

Will be sure to keep you up to date with Tom’s harassment case.

Warm Head

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Hairspray?? He does keep telling me it will grow back but it might be awhile until he needs this.

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A Ferry Trip to Baby Proms at the Opera House. Yes that is champagne and yes it was before midday.

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A spot of shopping for his sister

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Isabel’s After School Care, starring Miss Eddie, the student teacher.image

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We’ve always said it will be no worries if he never gets to school with a big sister like his.

Soft Toy anybody- just doing some sorting and organising

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Good morning!!!!

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8 thoughts on “A Sense of Deja Vu

  1. Thanks Ali for the update, I thought I would come over and see him on Sunday afternoon when Marg is there…Debxx

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  2. I love the pics Ali – Eddie looks like a very attentive student – is Issy a strict teacher or just really good at engaging with her students? … looks like you all made the most of the family time and had some really good times, you deserve champagne before midday luv!

    Love will get Eddie through this, he’s living life with a whole lot of it! You truly are a glass half full person – you write so beautifully and always manage to tell your difficult story with positivity and a sense of humour.

    Prayers and thoughts are with Eddie and you all, especially that the mucositis stays away xx Nicole

  3. Thanks for your latest news Ali Here’s hoping the bumps in the road aren’t too rough for our little man and his wonderful family. Love Phyllis

  4. Great pics ali. Thanks so much for keeping us in the loop. We’re thinking of you guys. Give the boys and wonderful Isabel a cuddle from the Hewsons.

  5. Hi Ali and Family.

    Just back from a trip and immediately got on your blog. Sorry to hear of the latest “bump” but know your very “special” family will be able to support each other through it all. Lovely to see the photos and to know that you can make an attempt at normal family life. Kudos to you all and a bear hug for Isabel, a wonderful big sister.

  6. Thanks for the update, and the photos, Ali. Just hope that everything starts to smooth out for you all and rewards your love, determination and positive spirit. Love and prayers to the family and all those supporting you.

  7. Thinking of you all, especially little Ed. He is truely lucky to have such a wonderful, caring family to support him through this horrible journey. Isabel looks like a fantastic teacher,all the kids look so happy playing together. Our prayers are with you all and thank you for taking the time to keep us updated on Ed’s progress. Love Kimberly

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