Thanks for the Bone Marrow bro!

On Monday night 22nd July ’13 Horace and Simon flew into Bristol. At 8am Tuesday morning they reported to Oncology Day Beds at Bristol Children’s Hospital with Miriam in tow.

Simon needed blood tests and to be seen and examined by various doctors including a very good looking anaesthetic registrar from Newport – he provided an alternative and less depressing topic of conversation for us mummies for a few minutes after he left the room!
Horace went up to stay with Leah in the transplant unit and I came down to stay with Simon.

Simon went to theatre in the afternoon to have his bone marrow harvested from his hip bone under general anaesthetic. Simon was very good natured about everything and he never complained at all.

When I had said goodbye to Simon in theatre the nurse asked if I was upset and I said no, because I couldn’t begin to explain that I was much too upset to risk giving way to any emotion whatsoever. I felt that I had to keep a tight rein on my emotions lest they become like runaway horses and leave me completely undone.

When Simon returned from theatre he was transferred to their lovely purpose built Adolescent Ward. He was very drowsy but managed a smile whenever anyone spoke to him. The staff informed me that they were very pleased with the quality and quantity of the bone marrow harvested – I was so happy and relieved. This would now be frozen until Leah was ready to receive it.

In the meantime Leah was lying ill in the transplant unit with septicaemia. Around tea time when I had satisfied myself that Simon would be ok, I returned to Leah just in time to witness her having another rigor caused by her high temperatures. I called a nurse who immediately administered pethidine.

Around 10pm Simon managed tea and toast. He was discharged back to “SAMs House” in a taxi along with Horace and Miriam around 11pm. I think Simon took paracetamol at some stage but he didn’t complain much.

On Wednesday evening Horace and Simon flew home and my niece arrived from London to look after Miriam. On Thursday Miriam went to stay with my brother and his family in Cambridge for a week and then travelled back to Ireland with them.

Today I discovered this song on my iPad playlist and it brought me comfort:

SELAH – PART THE WATERS / I NEED THEE EVERY HOUR 

When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me
Lord and hold out Your hand
Touch my life
Still the raging storm in me

Rescue Me

Leah is gone from our lives 6 months today, so last night I did something I’ve been wanting to do for a while – I watched My Sister’s Keeper with Miriam, my youngest daughter. The last time we watched this film was with Leah, before she became ill.

I’m glad that Leah’s illness and suffering wasn’t prolonged like it was portrayed for the girl in this film.

Leah was unwell for just over 12 months.

I’m glad that I never had to make any difficult ethical decisions either.

I’m especially glad that when Leah was in an ‘end of life’ situation, that God gave me the grace and the strength to let her go and hand her over to her Heavenly Father.

When Leah became critically ill, I was able to talk to her about the possibility of death.

Leah would never have felt that death was a forbidden conversation topic, although of course I was praying for a miracle of healing as that is what I wanted most of all.

This time last year we were packing to go to Bristol. It was a time of fear and excitement.

More excitement than fear to be honest, because I really believed that through prayer, a bone marrow transplant and the amazing expertise of the haematology staff at Bristol Children’s Hospital, that Leah was going to recover.

Any fears I had at that stage, were fears of the “unknown” rather than fears of Leah not recovering.

This is a photo taken of Leah, Miriam, and I, as we were leaving the house to go to the airport to fly to Bristol on the 21st July 2013.

We had been told that Leah’s chances of recovery were 70% and that sounded quite good to me.

Recent research that was revealed to us since Leah died, would suggest that someone with Leah’s constellation of symptoms and her specific genetic mutation, only has a 50/50 chance of survival.

I’m really glad that we weren’t told THAT when she was alive. It’s important to hold onto hope and it’s easier – though certainly not impossible – to hold onto hope with a 70% survival statistic than with a 50% survival rate.

So what have I learned in the past 6 months?

I’ve learned that when Leah first died I was too numb/busy/exhausted to really understand the extent of my loss.

It’s only as time goes on that I’m realising how wide, high and deep is our loss.

I’m learning that emotional pain can be relentless.

I’ve learned that small unpredictable things will often cause me to fall apart quicker than the big predictable things – catching sight of one of her favourite foods on promotion in the supermarket often reduces me very quickly to tears. Since she was a toddler Leah loved shopping and invariably accompanied me on shopping trips – now I shop only out of necessity.

Sometimes I feel like I’m standing on the edge of a great abyss of emotional pain and grief.

However I’ve also learned that sadness and joy can coexist in my heart – I’m not sad all the time – there’s many happy moments too with family and friends and I definitely haven’t lost my sense of humour.

I’ve learned that I know some amazing people – people who have surrounded me and my family with their loving support on this sad and painful journey.

I’ve always been a very independent person but I can’t be so independent any more – I rely on emotional support from those around me a lot more than I used to.

I’ve discovered first hand the value of counselling – sometimes my weekly counselling sessions feel like an oasis in the desert – a safe place where I can talk about anything that I need to talk about.

I’m learning more about my relationship with God too – some things I’m less sure of and other things I’m more sure of, but I couldn’t get through any of this without Him.

I read my Bible every day and I use devotional readings, but I still find prolonged prayer difficult.

I continue to find worship songs the easiest way to connect with God and they often become my prayers.

The song that I have recently been listening to on ‘repeat’ is “Rescue Me” by Selah – the lyrics are amazing because they echo the cry of my heart:

Deep is the river that I have to cross
Heavy the weight on my shoulder
I have discovered how great is the cost
Of trying alone to cross over
I try and I try but the current’s too strong
It’s pulling me under and my strength is gone
Don’t leave me stranded

Rescue me, my God and my King
Water is rising and I cannot breathe
Wrap Your arms all around me and
Carry me over, carry me over
(Rescue me)

There is a bridge that is easy to cross
While all of our burdens are lifted
Peace is the land that is waiting for us
Lord, give me faith to believe it
Cause I’m in a storm but I’m willing to fight
I’ll overcome and I will not die with You by my side

Rescue me, my God and my King
Water’s are rising and I cannot breathe
Wrap your arms all around me and
Carry me over, carry me over
(Rescue me)