Betty's Story

What happened when Jen was given the devastating news that baby Betty had an aggressive brain tumour.

I feel can talk about anything to our Julia’s House nurse – these are not medical conversations, they are human ones.  

When you are going through this sort of trauma you don’t want to keep explaining all the time. You have lived through it, and that was traumatic enough.

Betty’s nurse feels like part of the family, she is so wonderful to all of us. I trust her as much as I do close family.

Julia’s House come in and take all the pressure off – they do all these fun things with Betty and I can just walk out of the house for a while, rest and be myself; do things which make me feel better like exercise, have a bath or see friends.

It’s a testament to the nurses and carers that I feel able to walk away and leave Betty in their care, because when we first came home from hospital I could not face the idea of someone outside the family looking after her. I have such trust in them. They are such nice people I actually find it hard to leave sometimes, I want to stay and hang out!

Betty has been through so much. Two years ago our beautiful seven-month-old baby was diagnosed with a highly aggressive brain tumour and our world turned into a living nightmare. There aren’t words to describe what we have been through as a family, other than horrific.

She underwent 10 months of gruelling treatment: brain surgery, intense chemotherapy and radiotherapy, and now for just over a year – we've been at home and Betty has finished a year of preventative oral chemotherapy.

As a result of her illness and treatment Betty has been affected in lots of ways. We are lucky that she is happy and her sight has recovered, but developmentally she is delayed, deaf, and is partially fed via a tube.

I have always been a worrier, even when Betty was a happy, smiley baby. But her personality changed, she was crying a lot and chewing her fist. Her neck became stiff and she really cried when I pulled clothes over her head. The doctors thought she was just teething. 

This went on for a while – worrying, going to the doctor, seemingly nothing serious wrong with Betty. Then we went away to a family wedding but ended up missing the whole thing because Betty was just too upset.

One morning we noticed she was holding her head strangely, like her neck was stiff. The movement of her head also seemed dramatically reduced. She was crying a lot and was so distressed we ended up taking her to A&E, but they examined her and said she was fine.

My mother-in-law had flagged all these little changes and having looked it up she thought it was water on the brain.  We ended up going back to the doctor and taking Joe’s mum with us so she could talk to the GP too.  The doctor took some measurements of her head and it was bigger than it should have been.

After checking with the hospital we were told to go straight there for a CT scan.

Afterwards we were called into a room and they broke the news – Betty had a mass in the middle of her brain, a tumour. I could not hear anything properly after that, I could barely stand up I was in such shock.

Betty was immediately blue-lighted to Southampton Hospital; she was screaming and screaming at that point from the pain. She needed an emergency drain to relieve the pressure on her brain.

She was thrashing around on the bed so much they were struggling to get  an anaesthetic mask on her mouth. It was so distressing but we were asked to leave her as they needed to operate. After an MRI scan and operation at one in the morning, we came back to pick her up and she was convulsing on the bed because the operation had triggered seizures.  

Overnight we fell into a pit of despair.

The following week she underwent more than seven hours of brain surgery. The whole family was there but we were told not to hang around the hospital, better to go out and do something.

Joe and I went for a really long walk, we just kept walking and walking and walking, anything not to think about what was happening to our baby.

The surgeon thought he had managed to remove the entire tumour.  We actually slept that night for the first time in a long time, but it would be 10 days before Betty woke up.

She was on a ventilator and we were by her bedside, watching her all the time. I became obsessed with all the observation notes the medical team made and watching the bleeping of the monitors.

We hoped we were over the worst but there was more bad news to come. Before she even came round we were told the cancer she had was so rare that the stats were not good.  She needed to have intensive chemo – including injections into the brain fluid - and they did not know whether she would cope with the treatment. We were told that radiotherapy was essential, but that she was too young to have it.

Two weeks later we found out the tumour had started growing back and Betty needed another major surgery.

At this point we were just getting through the days, basic self-management like eating and showering. But it was Betty, our family and friends who spurred us on, got us on our feet and by her side to do every little thing that we could for her. We ended up spending seven months in hospital, rarely going home.

When she had her MRI scan in July the doctors noticed some possible changes in her brain and spine.  I almost felt stupid for having allowed myself to think that everything would be alright, like I had been kidding myself all along. But I remembered how far we had come - how could we do anything but hope for the best for Betty?

Thankfully after a very scary week of investigations and second opinions, we had the phone call to say it was ok. Betty was still clear of cancer.

We had experienced hospice care before. Me, Joe and Betty spent two days at a residential hospice at the start of Betty's chemotherapy, but at that point we were in a very dark place. It was awful; I thought we were being sent there because everyone thought Betty was going to die.

On the third cycle of chemo she was referred to Julia’s House by our community nurse who made it really clear that this referral was about getting some respite, not about end-of-life care.

Julia’s House met us when we came home at the end of treatment, to put in place a care plan so that they could help us look after Betty at home. Because she has complex needs, only us - her parents - and her grandparents were able to look after her, or trained medical professionals.

Joe and I hadn’t been able to work for a year, let alone figure out how to live a ‘normal’ life at home again. On top of that we were completely shattered, we’d barely had time to process what had happened to us.

After building up a relationship, which was made very easy by their amazing staff, they put together a care plan and a play plan, coming to our house to provide ‘sits’ to give us a break. They have met us at the door in our pyjamas, exhausted and emotional.

They’ve put her to bed so we can go out together as a couple. They come nearly every week, armed with toys, messy play, love, hugs and care and simply look after our daughter beautifully, so we can have a break.

Many people know about the hospice care that Julia’s House provide to families at the worst time, but a huge part of what they do is providing this kind of support out in the community for families like ours.

Being able to go out, do little things for myself like getting my hair done, are so important. Time to yourself is precious and rare. You need to build yourself back up so you have the energy to give to your child.

Joe and I have also had some evenings out while Julia’s House have been looking after Betty. When your child is seriously ill you just don’t get those breaks when you can be together. All the focus is on keeping your child safe and alive.

You start to see each other as parts of a functioning machine – just asking each other for things and delivering. Julia’s House gave us the chance to reconnect and be a couple again.

And the respite is just the tip of what’s available to families. Playmaker Sue has been instrumental in helping Betty to play, even when she has been really poorly. I can’t praise her enough for everything she has done.  

I booked tickets to take Betty to see a puppet show and invited Sue to come along. But as Betty had been ill the week before I decided I didn’t want to take her to a theatre full of children and risk exposing her to bugs.

Well Sue only went and arranged a private ‘meet and greet’ with the puppets for Betty.  She loved it and was really looking at them; it was just the best day.

There were times when we thought Betty would die, but now she’s home, in remission and learning to eat and drink again. She has to have MRI scans every three months for another year, and depending on what happens, they will hopefully go six monthly for two years and then annually.

We have come out of the other side of this horrific time, passed into another dimension and learning how to relax and live again. We know there is always a chance that the cancer could come back, it is never going to be history for us.

The fear around Betty’s cancer has been like a record playing loudly, dominating everything, but the volume has been very gradually turned right down over a long period of time. It’s still there in the background, but we feel we don’t have to listen to it any more.

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Being able to go out, do little things for myself like getting my hair done, are so important. Time to yourself is precious and rare. You need to build yourself back up so you have the energy to give to your child.

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