Isabelle's Story

By 7 months old Isabelle had her first ear infection, no big deal. Except after 5 days of antibiotics she didn’t pick up in her personality. Returning to the DRs multiple times to be told there was no infection so it must be teething, seems plausible. We continued along, and yet this feeling of fear grew and grew. I started to notice personality changes, she didn’t like to play, she didn’t interact and she stopped enjoying things such as swimming and parks. We again were told this was probably due to teething.

By 10 months old, her development was slow and she had another ear infection. Same as the one before, she had antibiotics and whilst it cleared the infection she didn’t pick up in her personality. She preferred to lay and snuggle all day, whilst this was amazing, it just didn’t feel right, why didn’t she play or interact?

We went away on our first family holiday as a 7 (April 2019) and Isabelle seemed to thrive, she mastered crawling and seemed to be a little happier. We were so over the moon to see her progress and indulged in every smile and interaction we had from her.

Her first birthday crept up on us and we were all set to celebrate in style for her. Except we spent 3 weeks in hospital for unexplained vomiting. Our beautiful baby girl just laid there for weeks, not really moving or playing again. That dark feeling was now so overwhelming I was convinced I was going to lose her, nobody could tell me what was wrong and her blood work came back clear?

June we spent at home, what we hadn’t realised is how much our lives had altered, I looked after Isabelle everyday where we just mainly laid with her, we tried to encourage play and crawling, we even tried taking her back to swimming (she did not enjoy this). WE went to the doctors every few days to check her over, she did have another ear infection… so more antibiotics. I even started reaching out to the health visitors completely baffled by her lack of zest for life. I was told things like it was her personality type, she was a really poor teether and to keep her dosed up! Yes life had become so abnormal we had to administer Calpol and ibuprofen constantly around the clock. WE did continue to go back and forth to the doctors questioning this advice and couldn’t believe this was ok or normal.

July came and she continued to regress, she would only lay flat, you could not hold her, she hadn’t smiled in so long, she stopped feeding and was fussy with her milk. She also began to sleep around the clock, only waking for occasional milk and medicines. I also noted that her head started to grow, it started with a few tops not fitting and quickly became half of her wardrobe that I could not fit over her head. Again multiple drs visits and even getting the health visitor to redo all her measurements. Her weight was 75th percentile, height was 50th and head…. The head could not be plotted as it was > 98th percentile. I was told this was normal?!? It could be due to genetics of large heads?!? Confused and frightened and having no faith in anything I was being told and fed up of all the visits to the drs and the health visitors, and in all honesty feeling desperate and utterly crippled by that feeling that had plagued me since birth.

17th July (my birthday), I tried to celebrate in the day but my little girl was so sleepy and her head looked quite worrying by this point. I will never fully understand what happened but I walked in to sit with her and I was hit, hit by a force that quite simply said … its time to go. With that I said to my husband “we have to go”. He rushed her to Southampton Hospital where my worries were validated by their worries.

18th July she was rushed for an MRI and by the afternoon we had a big team enter the room and drop what I can only describe as a shattering bomb to my entire world. It was a brain tumour! It was a brain tumour that had grown to 11cm in my tiny baby girl. It was a brain tumour that had grown so large her plates in her head had not fused together and it was for this entire reason that she was still alive.

Surgery was completed on 18th July, with a complete removal of the tumour. However the cells that grew it remain and thus our battle against cancer does too.

She is now on a long road to recovery and has just started 14 months of chemotherapy. This will not be a cure, but a delaying tool for the Tumour. The only treatment that may cure is Proton Beam Therapy. This may or may not be available to her on the NHS and is currently not offered to under 3s. We are trying to ensure what ever the outcome we can get her the treatment she needs.

PLEASE give her this chance to fight this horrible disease. You can follow her progress through her treatment at her personal Blog on Facebook #Superhero Isabelle

If she receives funding for all treatment required the funds will be distributed between the amazing charities that have helped us this far xx