Two amazing kids


I met two amazing kids yesterday, they were full of life, full of fun, I sat down at a table with them. The kids were colouring in a pictures of Peppa Pig and A Little Mermaid, they were lovely, focused and then I got asked the question. ‘Can you teach me something?. Who were these kids? They were two lovely children who had been diagnosed with cancer over 3 months ago and had not been home since then. Their parents had been living at the hospital for most of the time. And why did they ask me the question? Because they missed their friends, they missed learning and they were waiting. Their lovely lives and those of their parents had been put on hold. How could I deny these two children a maths lesson, so at 4pm at GOSH I gave the children an addition and subtraction lesson, they loved it!

Chemo round two


Yesterday, MLG was due to start round two of her chemo, unfortunately that did not happen. With not a little amount of stress we arrived on time at GOSH. Titch was stressed and vocal (you could hear her screaming and crying from afar) very clearly she said ‘I’m better now, I’m better now, I wanna go home’. Within a short period of time she was weighed (they need to do this in order to make up the correct dosage of chemo) then she played, she settled into the routine of GOSH straight away, go to the play room and play.  Unfortunately for us, the nurses then discovered that we had been weighed too late in the day for the chemo to be made up and administered. So frustrating as we arrived when they told us to, rearranging our plans at short notice in order to do so. What would you do, stay or go? Would you take your child home, to allow yourself and your child to spend a night in your bed, knowing that your sweet, frightened child would have to return the next day OR would you stay the night, reduce the stress of the return journey but be in unfamiliar surroundings?  The decision was made. An hour and a half later we heard the shouts and screams of delight as brother met sister, sister cuddled brother, brother jumped up and down with joy as little sister returned home for the night. Safe to say they both went to bed late, the look of joy, peace and relaxation that was on their faces as they slept will live on in my memory forever.  

'I don't want to lose my hair.' These were the words that came out of a 2.5 year old's mouth. What would you do? What would you say? What did we do, what did we say. Stunned silence, a look and feeling of fear, a realisation that My, Our Little Girl is aware of what is happening to her and her body. I, we, need time to think how to respond.

Alive and awake

My Little Girl (who a little less hair this morning) woke up at 4.30 am for a cuddle, played, ate a cake, played with her dolls house and helped her mum blow dry her hair!!!! If she was well I would scream, now I only see this as a joy, oh boy.


http://www.bbc.co.uk/news/uk-19238439

A last look at night

Before I went to bed I tonight I took one last look at my daughter, she lay on her back, arms streached out, looking content, glowing and at peace (with the occasional cough which kinda ruined the moment). Good night world, sleep tight

The Letter

Last Friday we received a letter addressed to a doctor at a local hospital, our link doctor, it was two sheets of A4 paper folded into three pieces. The letter appeared inocent enough, it was the minutes of the meeting that the consultant had had with us when we were told the results. The bubble had burst, once again, the prognosis, Our Little Girl has a 35 to 50 percent chance of surviving the treatment, the course of treatmen is due to take 17 months, then we wait, she may have 5 years,less or more to live. The surgeon could not remove a 1.5 cm square of tumor, my heart sank, I physcially shrank. My wife read the letter, a black cloud desended over our house.' They' had said proudly that 'they' could not see any signs of the tumor on the MRI  scan, yet why could they not see  1.5cm of cells. The question that came to mind was, how quickly do they reproduce?' And on went the letter......

What can I say, MLG is having a lovely time at home, with her big brother, with her friends, with her family. The bubble is getting smaller with every brown strand of hair that comes out. How long until My, Our, Little Girl looses all of her hair, days, perhaps a few weeks at most. Shortly she will be having her next dose of  chemo, with that comes sickness, lack of appitite, time in hospital away from her family and friends. Is there a positive side? Yes, with every dose of chemo the cancer gets blasted a little more, with every day that passes with have one more day of My Little Girl screaming, shouting, giggling, cuddling, loving and getting up too early.

Lives on hold, dreams shattered
Throughout this short experience  I have seen many lives put on hold (that of other parents in a similar situations), hard work go to waste,  dreams shatter and crumble away. Cancer does not only effect the Mlg, it affects the hopes and dreams of the parents. Job hopes fade away (my wife has had to give up work), with that life chances change both of the adults and child/ren  incomes drop. Cancer, and long term illness shatters dreams and hopes, that is silent fight that the family have to deal, it will not be spoken about often. Cancer and long term illness in all its forms, the silent killer of dreams.