'Dad's-eye view': a father's blog

Published: 14/12/2012

It’s impossible to understand just how horrible that moment actually is – unless you have lived it.

I’ve lived it. My wife and four other children lived it too and they have their own version of how they felt. Here is mine:

Towards the end of December 2010, our daughter, Rebekah had been suffering headaches. She’s a fairly private sort of person and so she didn’t say anything to us until they were quite severe. The headaches got worse and worse. By the end of January 2011, she said the pain wouldn’t go away, even when she took medication. Actually, she didn’t say anything to us until February, and even then she maintained a level-headed approach to the situation. We waited until the end of February to see if things got better – more rest, regular medication etc… but things didn't.

A visit to the doctor was arranged in early March and I went with her. As she spoke to the doctor, I got to understand a bit more about the terrible things she had been suffering. The doctor picked up on her high blood pressure issue and arranged to see her three weeks later to re-check the blood pressure. At this second appointment she disclosed the double vision she was experiencing when she put her head on her shoulder, or moved quickly. It then corrected itself when Rebekah was not moving. The doctor concluded this required an expert’s attention.

We arranged to see a paediatrician. The earliest appointment that could be arranged was mid-May. In the meantime ‘Bekah performed on stage, acting and singing. She also went on a school trip to Holland for five days. She played in team sports and was fully involved in the social life of her peers and siblings. During this time, all the symptoms worsened.

The appointment

The May appointment day arrived! Bekah and I got to the appointment nice and early. We registered with the office and were told the doctor was running late. Half an hour after the appointment time, I went to the counter to find out they had told the doctor we had not arrived and so the doctor had left for the day! Lots of apologies, and another appointment was arranged for the following week (the NHS’s usual efficiency meant letters telling me off for missing the appointment arrived at our house, which I responded to and got an apology for!).

On the new appointment date my wife Heather was able to come as well, which was a blessing. The paediatrician was very diligent and took lots of notes. He arranged for blood tests and an urgent MRI scan. Later he told us he was working on the basis that Bekah may have childhood migraines. In the meantime it was half term break and we were able have a chill-out, so we went to Wales for a day so my wife could run a drama workshop. Bekah helped with running some activities on the day. On our way to Wales, we received a phone call for Bekah to go for an MRI scan on Friday 3rd of June. Our doctor had not received the instructions to run the blood tests but we were to go for the scan anyway. By now, I was hoping to have it all sorted before we all went back to school.

The scan

On Friday 3 June, Rebekah, Heather and Susanna (Bekah’s older sister), turned up at the hospital for the scan at 4.30pm.We had a twenty-minute appointment slot. I went into the MRI scan room with Bekah. Everything seemed to be taking a long time.

After the first scan, they gave her an injection of dye and took another scan. When we finished we went to a waiting room with Heather and Susanna. We all chatted about the experience – Heather had noticed two doctors going into the scanning room, while we were still in there. We also noticed that other people had been free to leave after their scans were over! After 15 minutes, we were directed to another waiting room where we waited for another 40 minutes. No one told us anything other than the doctor wanted to speak to us. When were called into what appeared to be a day ward bay, there were several people. After the introductions we had three doctors and a couple of nurses. The lead doctor asked which daughter was Bekah and then asked her to walk in a straight line. She had a slight unsteadiness while walking and he looked into her eyes. He asked us to sit down.

Finding out

The doctor told us that the scan showed that there was a growth, a lump and then he finally said ‘brain tumour’. Whether it was cancerous or benign was unknown.

I felt like I didn't want to believe this, but on the other hand, we had the cause of the problem headaches, also an unwanted adventure of new experiences awaited us. My mind began to think about the consequences of this news, no school/work Monday, inconveniences and unexpected costs, ‘where do we go from here?’, ‘I just want to get on with things’. I wanted my daughter to be well – she appeared to be coping so well before all this.

We were taken to a ward (I didn’t know, but Bekah would not be returning home for five months, and no one there could have told me this). Rebekah was given hospital clothing to wear and a bed in the ward. We had to learn what was expected of you at the hospital and its routines, eg patients get fed and family don't, one person could sleep on an unusually comfortable padded bench seat, ward round times varied from day to day, hospital noises, noisy patients and staff (especially at night). ‘Where do we go to the toilet?’, ‘how do we get in and out of the ward?’, ‘parking fees?’ ‘what assistance can the hospital offer?’. Some of the answers to these issues were unknown for days and days.

Heather contacted our other children at home to tell them the news and to ask for prayer. Our two boys and our youngest daughter got on to Facebook and from that day, the messages of support poured in. We started to receive lots of emails, phone calls and texts. Often, there were more than we could respond too, but a real blessing.

Those first few days I did a lot of travelling between the hospital and home until staff were able to put us in touch with a support group called Clic Sargent, who provided accommodation near to the hospital. Heather and I did not feel like seeing people at this time unless they were close friends, but we sent lots of texts to friends and work colleagues. We had to sort out where were going to stay. ‘Should we stay at our home?’, ‘what clothing and stuff would we need?’. We had no idea how long this was going to last. I hoped no more than a few weeks at the time.

In my mind I had already become busy with the practical needs of the family. Everything took time – even the simple things. We all entered a form of shock and none of us handled it in the same way. Then there was all the medical nitty-gritty! Rebekah would need two operations, and very quickly. The specialist told us that the position of the brain tumour is very important as to how it affects the patient. Rebekah’s tumour was hard up against the brain stem and that controlled many vital parts of her body. It was behind the occipital lobe that controls her eyesight. They were concerned that they may have to leave part of the tumour because if they took all of it, it may wipe out her personality. It’s a very scary situation to face losing your daughter, but to still have her alive.

When I think back over those days, I am glad they are over, but I still have the numbing effects (and the sense of helplessness) of those days and wonder when I will wake up to find it was a bad dream. Life after the operations has had its own twists and turns. That’s another story."