Leah’s Journey by her Mom Victoria

Leah’s Journey by her Mom Victoria

On my daughter Leah’s 15th birthday 31/12/12 I took her to the GP with a 4 month history of excessive menstrual bleeding, as well as acne that wasn’t responding to topical treatments. The GP did a blood test and we received a phonecall to return as they were worried that she might have leukaemia.

Leah smilingLeah was severely neutropenic as well as being anaemic and having a low platelet count. Further tests showed no evidence of leukaemia so she commenced weekly blood tests and various other investigations. In February ’13 Leah’s first bone marrow biopsy was cancelled as a paediatric haematologist said that Leah’s weekly blood results “were not consistent with any nasty bone marrow diseases”.
Later in February ’13 Leah was admitted to our local adult oncology/haematology ward with abdominal pain. Initially she was diagnosed with constipation but following an ultrasound scan this was then changed to appendicitis and she had an appendicectomy. I was told by the surgeon that he had operated just in time.

Leah’s postoperative recovery was relatively uneventful and she returned to school full-time 10 days later. Her friends carried her bags. The school bus driver lowered the bus for her every day for the first week.

In March ’13 Leah had a bone marrow biopsy. The haematologist was very upbeat. He said that they were 95% sure that nothing sinister would be found in my daughter’s bone marrow and that they were only doing this test to put everyone’s mind at rest.

On Friday 19th April ’13 at 4.30pm a doctor I had never heard of phoned me from a hospital in Belfast that we had never visited. He told me that Leah had myelodysplasia and needed a bone marrow transplant. Leah sat beside me googling everything on her smartphone while I was speaking to the doctor. Her subsequent response was simply “God has a plan for my life – we have to see the bigger picture.”

We all went as a family to see this doctor in Belfast on Tuesday 23/4/13 and my other children were tissue typed to see who could donate their bone marrow. The doctor said that Leah also had an acquired chromosomal abnormality known as monosomy 7. By the time the doctor was finished talking to us, it felt like our daughter needed a miracle, never mind a bone marrow transplant. My husband and I felt very despondent.

Leah had her eggs harvested in the Regional Fertility Clinic in Belfast to preserve her fertility. She loved babies and she was in a serious relationship so this was very important to her, but the process was invasive, traumatic and exhausting. Leah had no regrets however.

imageOur son was a 10/10 match and Leah was referred to Bristol Children’s Hospital for her transplant. Further tests showed that her myelodysplasia had been caused by a rare Gata2 genetic defect. If Leah had survived, her harvested eggs had a one in two chance of being affected with the same genetic abnormality. Our geneticist said that Leah could be referred to Guy’s Hospital in London for preimplantation genetic diagnosis when the time came to use her eggs.

Leah and I spent 14 weeks in Bristol where we were really well looked after. I have some lovely memories of our time spent in Bristol as there were periods when Leah was relatively well. Obviously there was also some very sad and difficult times when Leah was very ill and it was difficult being so far from home and family.

When Leah was well enough to leave hospital we had excellent accommodation nearby provided by Clic Sargent. It was helpful to meet other families in a similar situation and to have each other’s support. Here in N.I. Leah was in adult services so I never met any other parents during Leah’s 9 month illness journey.

imageLeah’s transplant was successful but she developed several complications post transplant. In late October ’13 we returned to N. Ireland. Leah and I attended Belfast City Hospital every Friday where she received excellent care. Our haematologist was very vigilant and attentive. He kept saying how well Leah was doing. As time went on, my intuition as her mother told me different, but I kept my thoughts to myself and wore a smile as best I could.

Two days after Christmas ’13 Leah became unwell. She spent 2.5 weeks in ICU in Belfast City Hospital with respiratory failure. Leah was on a ventilator for much of this time but she was awake quite a bit and tried to communicate by typing on her iPad. She smiled a lot, told us she loved us, listened to her favourite Christian music on her iPad and told her boyfriend that she wasn’t afraid to die.

On Thursday 16th January 2014 Leah was transferred to the NI Children’s Hospice where she died that day in peace and dignity, surrounded by love. She had developed idiopathic pneumonia syndrome, a rare complication of bone marrow transplant.

Although I know that Leah is happy and free from pain where she is now, her death has left a gaping hole in my heart and in our family.

The photo with Gromit was taken in Bristol just after her bone marrow transplant.
The photo in the blue hoodie was taken at home four weeks before she died.