Madeline’s Story by her Mom Michelle
My 6 yr old daughter was diagnosed with medulloblastoma and posterior fossa syndrome. This is our story.
10th June 2014 was the day our lives were shattered!! My beautiful daughter, Madeline was diagnosed with a brain tumour. Just the day before we were laughing about how silly we would look for over reacting to her symptoms.
For around 3-4 weeks, Madeline was waking up with headaches and vomiting..to begin with, we thought she was just trying to get out of going to school, at 6 years old, she knew how to pull the wool over my eyes. Gradually the headaches and vomiting got worse and soon we began to notice that she was becoming clumsy and losing her balance really easily, we hadn’t yet connected the two. On June 8th while celebrating our son’s football presentation with a meal out, Madeline vomited everywhere and that was the day I decided that enough was enough and that she needed to be checked out. The following day I called our local surgery and booked her an appointment with the GP for that morning. He listened carefully to our concerns and performed an examination on Madeline, he didn’t seem overly concerned but he wanted to refer us to the paediatrician at our local hospital, Queens Medical Centre. Later that day we received a phone call from the practice manager, asking if we could take Madeline along to the hospital the following morning. Alarmed by the urgency, I agreed.
Flash forward to the following morning, we were called in to see the paediatrician and just like our GP she performed the same examination and listened to our worries about Madeline. She mentioned that she saw Madeline playing and walking in the play area and that she agreed that her balance seemed off so she admitted her to have an urgent MRI that same day. Just over 12 hours later, our lives had changed forever. My happy, ‘healthy’, beautiful daughter was sick, and all we could do was listen to consultants and nurses telling us what needed to be done, how it was going to be done, with one thought screaming at me, is my daughter going to die??
3 days later, she under went surgery to remove the tumour. 7 agonising hours later, she was transferred to PICU and we were told that they managed to get at least 95% of the tumour out and that we had to sit tight until the histology report was back and we would know whether it was benign or malignant.
1 day post surgery, we were hit with another blow, Madeline had developed Posterior Fossa Syndrome, a condition that rendered our child almost paralysed. She couldn’t move, talk or even swallow. Our lively, energetic and extremely talkative daughter was gone and we were left with just a shell. It sounds dramatic but it felt like she had passed away, I was grieving for my youngest child. She had no facial expressions, she couldn’t smile, she couldn’t frown, she couldn’t even focus her eyes to look at us. We were heartbroken! Posterior Fossa Syndrome, is something that varies so much from child to child so no one could even tell us if, never mind when, she would recover.
7 days after surgery, we were told that Madeline’s tumour was malignant, medulloblastoma and that she would need chemotherapy and radiotherapy. My baby girl, is not only battling Posterior Fossa Syndrome, she now has to battle with cancer! The few days after that are a blur to me…. We were told statistics but no guarantees, we were told treatment plans and protocols but all I wanted to know is, will she die? Is this evil disease going to take my child away from me. No one answered me.
Fast forward to today, she has had four surgeries, one of them was a 2 am dash to theatre to have an EVD fitted as a result of hydrocephalus, she has had 4 MRI’s, 2 CT scans, 8 GA’s, 14 blood and platelet transfusions, she had 82 nights in hospital, 4 rounds of chemo, 2 separate trips to PICU and much more and she begins radiotherapy in October. She is now walking, talking, eating and almost back to her previous self. We know we have a long long road ahead of us still but my girl still has a smile on her face! After all she has been through, she wakes every day with the same bright and happy personality as she did before tumour diagnosis. She is determined, strong, stubborn and she will not be beaten, regardless of the outcome! I will always be proud of our girl, our blue eyed girl is our inspiration! She has taught us all how to remain strong in the depths of despair and no day is a dull day around her. She keeps us going and we will walk with her, fighting everything that can be thrown at us.
She has been through so much and collected over 650 beads of courage. The beads are her way of telling her story so far…..she gets to spend time with us while threading them on, one by one and they are a perfect example of her courage!