On Monday 25th March ’13 Leah had her first bone marrow biopsy in the Royal Belfast Hospital for Sick Children. This subsequently resulted in her diagnosis of myelodysplasia with monosomy 7. Leah was accompanied to the Royal by my husband, his brother in law & his two sisters. I went to my work that day as I said that I would never set foot in the world of paediatric oncology/haematology unless I absolutely had to. I couldn’t bear the thought of seeing children with chemotherapy hair loss and nasogastric tubes.
One year later I’m in Tesco’s buying THREE Easter Eggs instead of the four that I’ve been buying since our youngest child was a toddler. I never imagined that something as simple as buying chocolate could precipitate so much emotion.
Leah was more sedated this morning, her oxygen requirements were broadly similar to what they have been, kidney function slightly less good & chest X-Ray no change so today’s nice doctor ( one of my favourite) has decided to go ahead with a bronchoscopy and lavage under general anaesthetic.
They hope that this will enable a more definite diagnosis of Leah’s condition to be made & then they hope to be able to take her off all unnecessary medication and possibly increase the quantities of some medication that might help her.
Results from today’s tests will take 1 or 2 days and they don’t expect to make any major changes to her treatment until towards the end of the week. This procedure is very risky in someone so ill and she may or may not regain consciousness again.
I explained to Leah what was going to happen and then I read to her from Day 5 of Rainbows for Rainy Days by Catherine Campbell. I had some difficulty controlling my emotions & Leah reached out & gave me a big hug.
Just before they put me out of the room so as to set up for the procedure I put on the song “Our God is a great bigGod” & Leah proceeded to smile & do all the actions while lying there with her eyes closed.
“Our God is a great big God
Our God is a great big God
Our God is a great big God and He holds us in His hands………………………………..
He’s known me and He’s loved me
Since before the world began
How wonderful to be a part of God’s amazing plan.”