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.
On Monday 25th March ’13 Leah was due to have her first bone marrow biopsy, in the Royal Hospital for Sick Children in Belfast, to try and find a reason for why her blood counts were consistently so abnormal.
The day before, she was feeling very anxious. As she headed out to Youth Fellowship at our church that Sunday night I advised her to speak to her youth leaders about how she was feeling and to ask them to pray with her.
I waited anxiously for her coming home, hoping that the evening had been helpful to her. She burst excitedly through the door “Mummy, they wanted someone to do an I am Secondvideo clip for the Youth Service in church in a few weeks time and I did it.”
“I am Second is a movement meant to inspire people of all kinds to live for God and for others. Actors. Athletes. Musicians. Business leaders. Drug addicts. Your next-door neighbor. People like you. The authentic stories on iamsecond.com provide insight into dealing with typical struggles of everyday living. These are stories that give hope to the lonely and the hurting, help from destructive lifestyles, and inspiration to the unfulfilled. You’ll discover people who’ve tried to go it alone and have failed. Find the hope, peace, and fulfillment they found. Be Second.”
Leah was so excited and felt so privileged. One of Leah’s heroes and role models was Bethany Hamilton, a champion surfer who had her arm bitten off by a shark and she had done an ‘I am second‘ video clip. I don’t remember much chat about the pending bone marrow biopsy after that.
When I got to watch Leah’s ‘I am second‘ video clip I was so moved. I love the bit where Leah says “God will let you bend but He’ll never let you break.” When Leah was subsequently diagnosed I remember thinking to myself “Leah, you will learn the truth of those words like you have never known them before.”
She did – I saw Leah bent almost to breaking point in October ’13 when she was battling awful side effects from her bone marrow transplant. However in January ’14 when Leah was critically ill in ICU, she was so filled with joy and peace and love and contentment. She was a princess preparing to meet the King of Kings.
One Friday in October 2013, as I walked past Dr C at the Nurses Station on the Adolescent Ward in Bristol, he looked at me and said in a serious tone “I think you should know that Leah’s platelets have been dropping recently and I’m worried“.
I blinked and swallowed as he continued “I think she’s relapsing and will need a second transplant”.
In a low but steady voice I asked him what the immediate plan was.
He said they would monitor her blood counts over the weekend and if her platelets kept dropping she would have a bone marrow biopsy under general anaesthetic the following Wednesday.
We agreed that the possibility of relapse should not be shared with Leah unless it was definite.
At that time Leah was battling another complication of transplant and was feeling very unwell and discouraged.
By now I’d had plenty practice at being upbeat in front of Leah while inside my heart was breaking.
I went back to her room and acted like nothing had happened.
Like all haematology patients Leah had her blood tested every day, but her blood counts had been really good for a few weeks so we’d stopped asking for her blood results.
Over the weekend I made excuses to slip out of Leah’s room so I could find out from the nurses what her platelet count was.
Sure enough, it continued dropping.
Leah’s original transplant had been because of myelodysplasia with monosomy 7 – Dr C had warned us that this can relapse quite quickly after transplant and the first sign of relapse can be when a normal platelet count starts to steadily decrease.
There was no escaping the facts before me.
Unfortunately I also had another escalating problem – severe toothache.
This had started to niggle in August and if I had been at home I would immediately have made a dental appointment.
But I wasn’t at home – I was in Bristol, and I was a full time carer for my daughter.
I tried to ignore the steadily increasing pain in my mouth that radiated up to my ear, until I could no longer eat, drink, or even function to any reasonable extent.
Leah was told that she was having a routine bone marrow biopsy on Wednesday 16th October because she was almost Day 100 post transplant and all transplant patients have a biopsy around Day 100 – which is true.
“The sacrifices of God are a broken spirit; a broken and contrite heart, O God, You will not despise.”
At this point I thought
“Lord, I’ve never felt so broken in my entire life.“
I went on to read:
“Those people God uses most to bring glory to Himself are those who are completely broken, for the sacrifice He accepts is a ‘broken and contrite heart’……Those who have been gripped by the power of the Holy Spirit and are used for God’s glory are those who have been broken in their finances, broken in their self-will, broken in their ambitions, ……..and often broken in their health.“
Later that morning I sat in the waiting area of Bristol Dental Hospital with copious hot tears streaming down my face and wondered which was worse – the throbbing pain in my jaw or the unrelenting pain in my heart?
Thankfully I got ease from the dental pain & headed back to the hospital.
In the middle of everything I received a text from a teacher at Leah’s school in Limavady to say that the staff prayer meeting would be especially focussing on Leah that Tuesday.
This was such an encouragement to me as they knew nothing about the extra difficult week we were having but yet they had been moved particularly to focus their prayers on us that week.
Wednesday 16th October was biopsy day.
I got up to read and pray before Leah awoke, as I did every day.
I read these words from Hebrews 12:1
“Let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us”
The reading notes explained
“There are certain things that are not sins themselves but that tend to weigh us down or become distractions and stumbling blocks to our Christian growth. One of the worst of these is the feeling of despair and hopelessness. A heavy heart is indeed a weight that will surely drag us down in our holiness and usefulness”
As I waited on God that morning a peaceful calmness swept over me.
I remembered the words of one of Leah’s and my favourite songs “Never Once” – never once since we had come to Bristol had we ever walked alone, and no matter what the future held, the God who had given us the strength to get this far wasn’t about to abandon us now.
Leah had her biopsy, the rest of the day was uneventful, and we both slept quite well that night.We had been told that we would get the most important part of the biopsy results the next day.
Midday Thursday our TYA Nurse Specialist bounced in to Leah’s room all smiles to say that the doctors were very happy with Leah’s bone marrow biopsy samples and everything was looking good.
Leah and I smiled back but as soon as she left the room I burst into tears.
Leah looked really confused, so I explained through my tears about my conversation with Dr C the previous Friday.
Leah’s 15yr old brain struggled to grasp why I was now in floods of tears in front of her when the news was so good – mummy’s do funny things!
The doctors decided that the problem with Leah’s platelets was a side effect of one the drugs that she was on to treat her graft vs host disease – this medication was reduced and Leah’s platelet count eventually improved.
“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone“