It is a recognized fact that very high dose steroids (much higher than the dose that is normally used) can in some people trigger psychiatric problems and sometimes this can happen when the dose is being weaned.
Leah was on massive doses of steroids to treat her GVHD.
At first everything seemed fine.
Then at the end of September we got word that a baby had died suddenly on the transplant unit, three days before he was due for discharge home.
Leah adored children and prayed for each child on the transplant unit individually by name every day. After this baby’s death I noticed Leah’s mood plummeting – she became anxious, agitated, tearful and fixated on getting home.
On the Friday she told the BMT consultant that she wanted to speak to Dr C our senior consultant, as she wanted a date for booking our flights for home. We had been told the week previous that we could go home in 2 or 3 weeks. We were given an appointment with Dr C for Monday – we were staying in SAMs House the Clic Sargent hostel at this time.
Sunday night Leah started passing blood stained urine. During the night she was up every hour to use the toilet. In the morning I knew we should take an overnight bag with us to the hospital but I didn’t dare suggest this – I could tell that Leah was feeling very fragile.
We got to the hospital and Dr C told Leah the news that she didn’t want to hear – she had hemorrhagic cystitis most likely caused by BK polyoma virus in her bladder. This was an opportunistic infection, a complication of her bone marrow transplant. It isn’t one that clears up quickly.
Leah was readmitted to hospital but there was no available beds on the lovely adolescent ward. Instead she was sent to Cubicle 4 on the Bone Marrow Transplant Unit.
This was the room into which Leah was first admitted in July and from which she had very quickly requested an accommodation upgrade at that time.
It was small, pokey, lacked privacy and had no en-suite facilities – there was a commode in what resembled a cupboard in a corner of the room.
Leah was crushed, devastated, bewildered – she couldn’t believe this was happening to her.
Leah’s bladder was very inflamed – she had terrible bladder spasms which triggered some episodes of urinary incontinence as well – an awful experience for a young teenage girl.
She needed to use the toilet (commode) every 20-30 minutes.
Her mental state was in a downward spiral.
She couldn’t be left on her own.
Her distress was palpable.
At night I had to read to her for hours before she was able to fall asleep.
During the day if she saw me reading she would say “Read out loud please Mummy” – she couldn’t bear to be left alone with her thoughts.
On Wednesday the ward staff sent for the CAMHS nurse (Child & Adolescent Mental Health) – she insisted that a room be found for Leah on the Adolescent Ward on the basis of Leah’s mental health needs.
This certainly helped and was a great relief to both of us.
By Thursday Leah had got very little sleep for four nights and was in a bad place both mentally & physically.
It was decided that a bladder catheter should be inserted to drain the urine and enable Leah to get some sleep. This was done & Leah was given sedation.
However the bladder spasms were so severe that her bladder ejected the catheter with the balloon that was designed to keep it in place still fully inflated.
This now left Leah completely incontinent of urine & severely depressed.
She had to be referred to a CAMHS psychiatrist and a paediatric urologist.
She had to wear pull-ups by day and pull-ups and nappies at night as she was on a large volume of intravenous fluids.
Leah felt lower than at any other point in her illness.
There were days when she was allowed off the ward to go to SAMs House for a few hours and she wouldn’t go, because of how awful she felt about being incontinent.
She cried so many tears.
I cried too and I prayed and I hugged her and I held her hand and I snuggled beside her in her bed, but yet I felt powerless to alleviate the despair that was so evident in her eyes as she struggled with these very distressing symptoms.
Leah subsequently told me that having BK polyoma virus in her bladder was the worst part of her whole illness journey, worse than chemotherapy, worse than having her eggs harvested, worse than GVHD, worse than the pain of a collapsed disc, worse than anything.
The paediatric urology doctors were lovely and had great ideas and treatments for restoring bladder control.
Over a period of approximately 10 days things improved considerably.
Leah continued on medication and receiving help as an outpatient after she came home, as she still had some residual bladder weakness, but it was continually improving.
When Leah’s bladder symptoms started to improve, I started getting my daughter back again.
She was being discharged from hospital back to ‘Sam’s House’ & I was dispatched down the town with a list of what to buy as gifts for this one and that one.
Leah, my little planner, organised the packing while I was away shopping – how had we ended up with so much stuff in the hospital with us?
The presents we bought that day were just for the ward staff – we planned on doing home baking for the doctors.
A few nights later Leah produced another list & I was dispatched in the pitch-dark one night through the Royal Fort Gardens to the nearest Sainsbury’s, to buy ingredients for “fifteens” and “malteser squares”.
I have no sense of direction so Leah was amused and not at all surprised, when she heard that I had got my landmarks confused in the dark and added a few extra streets to my journey!
Maybe some of our Bristol friends will continue making “fifteens” in memory of Leah – they seemed truly fascinated with some of our Northern Irish customs such as the “tray bake mentality“!