MAGGIE
Glioblastoma Multiforme

On the 9th May 2013, our beautiful daughter Maggie was born in Galway, Ireland. My pregnancy had been normal and no issues had been picked up but when Maggie was just over a day old she became unwell. She began to turn blue in her cot (still in the hospital) and she was brought to the special care baby unit. It was found that she had a large bleed on the left side of her brain which was causing seizures. She was rushed by ambulance to a specialist children's hospital in Dublin. The next day we were told she would have an operation to remove the bleed. The doctors told us early that morning that the operation had been pushed forward as Maggie's organs were beginning to shut down. Maggie was six days old and was operated on for several hours. The bleed was successfully removed and she spent much of the next two months in hospital recovering. We were told at this stage that the bleed was random and that no further problems should arise. We were also told it would be a couple of years before the impact of the bleed and surgery could really be assessed but it was hoped Maggie would make a full recovery.

A follow up brain scan to check on Maggie's recovery was done and on the 5th of August 2013 I received the call at home to say that something wasn't right and we were to bring Maggie straight back to Temple St Children's Hospital in Dublin to be seen by her surgeon. Maggie had another scan when we arrived that evening and we were told that a large tumour had grown in the place where the bleed had been removed weeks earlier. The tumour was fully removed in a seven-hour surgery on the 9th August and on the 13th we received a devastating diagnosis of Glioblastoma Multiforme, an aggressive Stage IV cancer, rarely seen in children. Maggie was given a less than 10% chance of surviving 5 years but the successful removal of the tumour offered some hope for treatment. On the 1st of September, Maggie began her first of 24 rounds of chemo which took her from the age of 4 months to 2 years and 2 months. During these two years Maggie battled through nausea, NG tube feeding, pain, frequent seizures and seizure medication. She also had problems with a build up of fluid on her brain so had a shunt surgically inserted to drain fluid into her abdomen which is still in place. Maggie is now 2 years out of treatment and still in remission! We are beyond grateful and proud of our little girl.

During treatment, we were so focused on Maggie's survival that we didn't really take notice of missed milestones. She was late to crawl, late to walk and didn't have any speech but we hoped this would all fall into place once she got over treatment. Maggie's beautiful curly, brown hair began to grow and colour returned to her cheeks but no words were coming and we noticed her lack of engagement with the world around her. Maggie has just turned 4 and she still only has some words that she uses pretty randomly. She does not really talk to us and we don't know how much she understands of what we say to her. Maggie mainly communicates through gestures and frustrated cries. It's upsetting for her and us when she can't explain why she is sad or agitated. In the last couple of years, we have moved to the UK for my husband's work and Maggie goes to an amazing nursery for a few hours each day.

Maggie struggles with fatigue due to her acquired brain injury. She still naps most days, especially after nursery or a day out. Lack of sleep can dramatically influence her mood and behaviour, and when combined with the fact she can't effectively communicate, we get into some pretty epic tantrums! Maggie is also an anxious little girl and has some fears that may seem irrational but seem very real to her. She must investigate new rooms/ stairs/ houses before she'll go in and sometimes she decides she just won't. She's afraid of most bathrooms, hoovers and hairdryers! I don't understand but I suppose that's the problem for her too. She does not have the cognitive skills to make sense of things around her and this causes her to feel unsafe.

I as a mother struggle constantly to come to terms with Maggie's delays and issues. I try to stop worrying about the future but it's difficult to avoid. Will she ever catch up? Will she make friends? she be bullied? Will her cancer return? I worry about the present just as much! Could I be doing more to help her? Does she feel safe? Is she happy? Maggie's sometimes strange behaviour, love of random screaming and the fact she is still in nappies and drinks from a bottle can sometimes attract unwanted stares and this is stressful at times. I am defensive and worry about people unfairly judging Maggie or us as parents. We did not think that 4 years after her birth we would still be changing Maggie's nappies, dressing her, giving her a bottle or that we would be unable to have a little conversation with her.

Although my husband and I are busy parents, I wish I was busier in ways. I wish I could sit down and do puzzles, crafts or play games with Maggie. I'd love to bring her on lots of playdates and outings but the reality is that Maggie does not have much interest, energy or social understanding to do these things. Life has not turned out as we expected and we have had to adjust accordingly. I am now a stay at home Mum as Maggie likes familiarity and routine in her day. We also have a lot of hospital and therapy appointments to keep up with. My husband takes time off work to come to the bigger appointments with me as Maggie can be difficult to handle in public on my own.

In the week that I am writing this we have been in Great Ormond Street Hospital twice already. One appointment was to fit Maggie's new hearing aids as she suffered hearing loss due to chemo. The other day was for psychological assessments which found that Maggie is at a developmental age of an 18-month-old and it was suggested that she will be assessed for and should receive an autism diagnosis.

Over the past weekend we tried to bring Maggie to a gathering our friends had at their home. Within 30 minutes I had to leave with Maggie as she was (happily) screaming and stampeding through a nice game of musical chairs the other children were playing. The next day we tried to go out for a family lunch but had to leave before we got to order as Maggie began screeching loudly and when we tried to convince her to quieten down she became inconsolably upset. Simple family pleasures are stolen from us quite regularly but thankfully we find pleasure in many other elements of life with Maggie - her beautiful laugh, her determination and her love for all things fast and loud!! When we have to leave social gatherings or when we talk about Maggie's learning difficulties we have found that, compared to when Maggie was diagnosed with cancer, there is a lack of understanding and an awkwardness around the issue. We do not want pity - we have a beautiful daughter who means everything to us. She is not an inconvenience! We would prefer that people accepted and tried to understand Maggie's differences. We wish parents would speak candidly with their children about how Maggie is different in some ways but still is a child just like them, who wants to play and be happy and loved. We would like people to understand that although Maggie's cancer treatment is over and we are extremely grateful that she is in remission, her difficulties are not over. We are, as a family, fighting for the help Maggie needs to thrive and reach her full potential. Maggie and other children who have struggled and sacrificed so much to live, should be rewarded with a happy and fulfilling life, surrounded by people who are compassionate, patient and understanding.

We love Maggie and our life with her immensely and hope that we can provide her with everything she needs to love this life too.