|First bunches - only took 2 years!|
It was and is the worst luck in the world for Adi to get a brain tumour. There is NOTHING lucky or good about getting a brain tumour and even though we have been blessed enough to have experienced just how kind, caring and amazing family, friends and community are in times of need. Even though we have seen amazing generosity and thoughtfulness from complete strangers, even though we have seen the very best, bravest and heroic facets of our children and others, I would forgo all of that for Adi to have NOT had a brain tumour.
Despite the treatment finishing and clear scans, it is still ongoing - we live in fear of every scan, she has been left with hearing and sight impairments, potential cognitive impairments, difficulties with movement and hormone deficiencies. She is constantly missing school for various hospital and clinic appointments for eyes, ears, MRIs, ENT, speech, endocrinology, neuropsychology and other stuff to address the after effects of the chemo and radio therapies. But I still consider us lucky.
Last weekend we had to stay in GOSH overnight for a sleep study. It was unexpected - we were referred and offered the slot within hours of seeing the doctor - so Adi wasn't well prepared but we thought this was best as Adi can work herself up into a panic if given too much time to dwell on something (like her MRI scans). Adi had objected to going in so I worked hard to be upbeat, the staff were lovely and there were no needles or invasive procedures, only some electrodes stuck to her skin but I could tell Adi wasn't happy by the way she went stiff but she would only tell me that she was OK. For me, sleeping in the hospital brought back really horrible memories, especially when I followed her, hoisting monitors and wires with me, when she needed the toilet. All I could think of was doing the same with drips filled with toxic chemotherapy. I wondered how much Adi remembered, it was clear she hated it all. She hated the wires, she hated the strangeness, she woke in the night crying, asking to go home and needing a cuddle, and the next day told me that one of the sensors had been pulling and hurting her all night. We were both pretty shaken by it and it took a few days for her to settle properly. Let's also not forget Asher, he was rattled that mum and sis were away for the night. Although he said he didn't mind in reality he did, he did not sleep well. He made huge efforts to help Adi feel better when she got home - talking to her to reassure her and giving her a toy that would look after her if she ever had to sleep away from him again!
I am so grateful that this was a one off and that we don't have to stay in the hospital anymore but it was a stark a reminder of what we went through and what other families and children are going through. Having a tumour wasn't lucky but we know that Adi got off lightly compared to some other children. Just a year of treatment and she can walk, she can talk, she is learning to read, she can climb in the park, has a 'kick ass' attitude and she is HERE, WITH US. So are we lucky? Yes, all things considered, we are!