Many people have thanked me for writing so faithfully on our “Journey” page on Facebook and have asked me “How did you do it?”.
For Leah and I, it was part of our coping strategy.
When Leah was first diagnosed and she found out that she would be going to Bristol for her treatment, I suggested to her that there may be times that she would be very sick and wouldn’t be able to keep her friends updated and that we needed some kind of private space that either of us could write on to keep people in the loop.
Leah and I chatted about this for a bit and then she set up the “Journey” page.
We quickly discovered that the communication was two-way as people posted encouraging comments, song suggestions, prayers and/or verses of Scripture for us.
The “Journey” page became a real life-line for us during some of our more difficult times in Bristol.
When Leah was in ICU in Belfast the rules of the unit allowed me to use my iPad but not my mobile phone while sitting with her, so the “Journey” page became a vital part of my support system.
One of the challenges when writing updates for the “Journey” page when Leah was in ICU, was to give enough information that people could pray intelligently for us but not to give so much information that I took away hope and generated panic.
While Leah was in ICU, I was told many times by the doctors that she was unlikely to recover, but I was hoping and praying for a miracle.
On Saturday 11th January 2014, when the Dr told me that Leah’s X-Ray showed a slight improvement (for the first time since admission) I thought that this was the miracle coming through and I was very excited.
When I arrived at ICU on Sunday morning the 12th January and Leah’s condition had deteriorated significantly, I started to realise “We aren’t getting this miracle” and my heart felt very heavy.
By Monday 13th January, Leah’s medical condition had deteriorated a lot more and I thought “My child is dying and I don’t want her to die in a critical care environment.”
I asked the staff about my options for end of life care for Leah, but apparently there weren’t any options – never before had any patient on a ventilator been transferred out of that ICU to spend their final hours elsewhere.
Thankfully God heard the cry of my heart and I was contacted by a good friend/work colleague from home, who put me in touch with an excellent Dr in the WHSCT who specialises in Paediatric Palliative Care.
She dropped everything and drove from Limavady to Belfast to discuss end of life options with me and the staff in ICU, at very short notice.
I said that obviously I didn’t want my daughter to die, but if death was inevitable, I wanted Leah to die in peace and dignity, surrounded by our large extended family. Leah was happiest when surrounded by the people she loved.
The lovely Dr from the WHSCT very graciously explained to the staff in the ICU how it was possible for Leah to be transferred to the Children’s Hospice for her final hours and she gave them the necessary names and contact details.
By Wednesday 15th Jan, Leah was very weak. The Dr on duty that day – it was the nice Cork Dr – advised that our end of life care plan needed to be put in place for Thursday 16th Jan, although he wasn’t convinced that Leah would live that long or that she would survive the journey to the Hospice.
I asked family and close friends to pray that it would be possible for our end of life care plans to be carried out, both for Leah’s sake and also for the benefit of those who loved her and needed an opportunity to say goodbye. Leah had been unconscious since Monday and she was in no distress.
The lovely Cork Dr and a lovely nurse came with Leah and I in an ambulance to the Children’s Hospice on Thursday morning 16th January 2014.
Some of Leah’s “surplus” tubes were removed before she left ICU.
Approximately 30 family members of all ages along with her boyfriend Nic and his family, were waiting for us when we got to the hospice. Our TYA (Teenage and Young Adult) Cancer Nurse Specialist and Clic Sargent Social Worker, who had supported us along the way, were with us too.
The Children’s Hospice was such a lovely calm, friendly, welcoming place. Leah was made comfortable in a pretty bedroom with a sign on the door that said “Leah’s Room“.
The Spotify playlist on Leah’s iPAD was playing her Christian music softly in the background. Various people who loved Leah were holding her hands, stroking her arms, and stroking her head.
The end of life process lasted about 40 minutes and different people noticed different songs that played during this time.
The song that stood out for me was “A Beautiful Life” by Mikeschair.
“A beautiful life is unfolding before my eyes
Just like the sun will rise to fill the empty sky, so shine
Oh, your beautiful, oh, your beautiful, oh, your beautiful life”