We’re putting up our Christmas decorations today, and getting ready for our second Christmas together as a family since Niamh was diagnosed. We’re obviously so thankful that Niamh is progressing so well through remission and that this Christmas she’s in even better health than the last.
It is of course a time of reflection looking back to Christmas 2011 when Niamh was really starting to suffer with her then unexplained leg and back pain. The memories that are unearthed are not pleasant at all. We were so blissfully unaware that little over a month later she’d be on the surgeon’s table undergoing a 7 hour spinal operation to attempt to remove a monstrous disease and save her from paralysis.
Being thankful and being aware are two major themes in the Yates household this year. I am personally thankful I have such a committed, talented, and resourceful wife in Julie, who has made it her mission to raise awareness of childhood cancer. It’s currently Childhood Cancer Awareness month in the UK, but you’re forgiven if you didn’t know that as it really is such a non-event. It’s not surprising really when the “target audience” of parents with young children have many other things on their mind at this time of year, as do the oncology parents whose involvement is needed, especially those who sadly have one less place at the table for Christmas dinner this year.
Awareness is so important, not only to save the lives of children currently diagnosed too later, but to also prevent loss of mobility, loss of limbs, loss of sight, loss of hearing (the list goes on) in survivors, because the disease had already done it’s damage or because there were fewer treatment options available to them at a late diagnosis. Awareness in parents is so important, we just need a better month in which to try and raise it.
Therefore Julie has been on a crusade to change it to September, which is a much more appropriate month, and brings it in line with other countries such as the USA and Ireland, where it really is quite a big thing.
There has been GREAT news this past week. Julie, along with her crack unit of oncology parents from her Facebook support group, have persuaded Cancer Research UK to change it to September from next year, having resisted so many times in the past. The power of social media really came to the fore! Other charities such as CLIC Sargent have thrown their support behind it. It could be huge, if Gold in September can become half the success of Pink in October then that would be incredible. Suffice to say I’m incredibly proud of Julie for this achievement.
As for Niamh, she’s doing really well. Schooling remains the big obstacle at the moment as we’re still struggling to get her to complete the number of hours we’d like her to do in an ideal world, knowing how much she’s missed in the past. The school have allowed her to move on to a bespoke timetable of doing just 6 core subjects, giving her a more structured approach to attendance, and we’re trying to fill in the free time with catch-up sessions and other homework.
She’s also really growing up. She’s certainly not the little girl she was when she was diagnosed nearly two years ago, who innocently said to the consultant examining the base of her spine where the pain was that she was worried she was going to grow a tail!! That still makes me smile, especially as the consultant misheard her and said he wasn’t going to send her to jail!! One of many surreal moments on an incredible journey…
Until next time, take care and we wish you and your family all the best wishes.