Another other night away

How do you say to a two and half year old you are going to have an operation, the doctors are going to place a tube in your leg in order to extract stem cells. The stem cells will allow the doctors to give you stronger doses of chemo which will make you sick. You will probably have to have more blood transfusions. You will have to more injections in your leg which will cause you to scream with fear and go into a blind panic. But don’t worry it will be alright. How do you explain that to their older brother?  How do you reduce their anxieties?

Our solution was to make the experience fun! On Monday night we got in the car and drove, we saw the London lights, spotted sparkles and cars flashing by. Then we jumped out of the car and walked with a steady pace in the cool night air straight into GOSH.  First things first, we went to the ward, found our room, dump, yes dump our bags in and then......... inspect the play room and when I mean inspect I mean we took out every noisy, buzzy and fuzzy toy  and PLAYED. Time drew on, Mlg was happy with the playroom and Mlb knew where little sis and mum were sleeping. The lads said good bye, then came the tears and screams from a little girl who knew that once again she would be staying in a hospital room.

From what I was told Mlg partied on late into the night and my poor hard working wife had but two hours sleep. Mlg boy woke up feel secure knowing where mum and sis were.

pls take a moment to scroll down to the section below 'Perfect strangers in an imperfect world '

Perfect strangers in an imperfect world

In a small, white windowless room two people met, one tall the other small. The first person slowly, carefully stirred a cup of coffee they then turned to the second person and said in a desperate voice ‘It’s my daughter, it’s her third time. ’

A fridge hummed quietly in the corner of the room, the second person replied ‘My daughter is has just arrived, she is only two and a half. ’

Let’s call the first person Jill, and the second person Peter. Jill whispered ‘She is only nine; the other two operations did not work.’ 

Peter paused, holding a white polystyrene cup with cold water inside and then slow took a drink. Dreading the answer to the question he asked ‘What is her third time?’

Jill look puzzled, using the cupboard to support the heavy burden placed upon her shoulders by days, months, years of worry ‘It’s her third bone marrow transplant, I am her only donor. I’m her only chance. Pray for me. ’

Peter looked down and took a moment to think for a little nine year old girl he had and would never meet.

My name is not Peter, the lady's name was not Jill, my daughter is two and half and hers younger than nine. That  was an example of an everyday conversation in an everyday ward at GOSH. All four of us were and still are perfect strangers in an imperfect world.

Things that give us heart

Things that give us heart

Our Little Girl’s formidable will and love of life, feeding ducks and doll’s houses.

Our friends (and their food!!)

Our family

The knowledge that they are treating to cure

Messages of concern from all over the world and the knowledge that people everywhere are thinking of Our Little Girl and willing her to get better.

Knowing we have people of all faiths and all denominations praying for us.

Our son’s love of his sister

The nurses that listen to our endless questions and try to answer them

A charity that cares and the community that supports it

Gt Ormond St is one of the best hospitals in the world

A face full of fish and a kiss good night

A face full of fish and a kiss good night

Mlg’s is neutropenic. Once again she has no neutrophils for the past few days, that means that she has NO immune system, she is susceptible to infections. Every day a nurse comes around and gives her a jab to raise the levels, every few days she has blood taken from her central line to test her neutrophil levels. 

That said and done, yesterday she ate a few carrots (long ones), beans noodles and one mackerel. The mackerel had been grilled, it was nice and soft, the oil was oozing out and Mlg was given a little bit at first, she asked for more, then more and THEN MORE!  There was hardly any left for my wife and I. After that hearty meal she did a little jig and jog.

Just as my wife and I were getting even more exhausted at the end of the evening and the kids were going to bed, my son shouted I need to give sis a kiss. He rushed into her room and turned to his sister and said ‘I need to give you a kiss and cuddle good night’. For a minute the world stopped, the kids gave each other the sweetest kiss and cuddle, heads together, arms wrapped around each other. Sibling love, eternal love.

Things my wife and I find hardest.

Having to wear gloves to change MLG’s nappy for the few days straight after her chemo cause she’s toxic

The fact that MLG is getting used to all the medical stuff – holding out her arm and finger for blood pressure, oxygen and temperature checks. Helping the nurse with the equipment.

The fact that MLG is now proud of her bags for her ‘wiggly lines’ (her hickman line).

Her fear when the nurse’s car pulls up, she knows the sound of each one of their cars.

Having to hold her tight to stop her struggling when her dressing gets changed or she needs an injection.

Hearing her cry ‘not me!!’ and agreeing with her, every time.

Forgetting for a minute and then remembering again.

Stuff my face day

Yesterday was a 'stuff my face day'. The family went down to our  allotment and raided our pea patch, Mlg stuff her face with peas, followed by peanuts, pasta, eggs and so the list went on. To the big wide world this may not seem much, but for the world of cancer patients where parents are only too happy if the children eat ANYTHING, yesterday was a happy day.

A drop of blood and a lot of bottle!!!!

Who would have thought it, the power of the red stuff, haemoglobin!! I had forgotten that haemoglobin affects that amount of oxygen in your blood (science lessons from years ago), not enough makes you run out of steam. Athletes train at high altitude where oxygen is rarer so when they come down to sea level they run that much faster.

 My Mlg’s haemoglobin became low, she couldn't make enough herself and had been starting to go pale, sickly like a child with cancer.  Within hours of getting a transfusion of the red stuff she was back up to full steam, so much to so that just a few hours after getting back from the hospital, we visited Adventure Island theme park. Adi chose to go on the Choo Choo Train (nice), was encouraged to go on the Flying Jumbos (I chickened out), a touch of the Big Wheel was to follow, and then out of the corner of my wife’s eye she spied … the Kiddi Koasta and pointed this out to Our Little Girl. I’ve dived with sharks in Australia, parachuted out of planes in Peterborough and motorcycled to Mt Blanc BUT roller coasters don’t do it for me. Yet my 2.5 year old little girl wanted and insisted we go on the Kiddi Koasta, so all four of us went. The kids loved it and wanted to go again, the adults errrr, wanted to go home. Mlg got a lot of bottle with that bag of blood. Love life, love life to the full!!!  Who would have thought?

A bag full of blood

At 9pm last night we received a call from the local hospital to say the blood was ready, within the hour Mlg and I were cuddled togther (it was my turn in the hospital) in a small quite room hooked up to the blood machine. Over the next 4 hours a bag full of the good stuff was dripped slowly into Mlg who did not complain one bit, before dawn I was back in bed and the little one back in her mothers arms. The world is good again, for a few hours at least.