Nativity & Update So Far..

Today at the end of his school nativity, Dylan made me cry. After the last song was finished, the headteacher came up to say a few words, as is customary, about the show itself. He then goes on to explain each year how they do not charge admission to the show but instead use it as a chance to teach the children about those less fortunate and raise money for charity. This year the school’s chosen charity is the children’s cancer ward at Nottingham QMC and it was explained that they were chosen because they are supporting a child at the school. As bold as brass, Dylan turned to face our direction and gestured to himself quietly exclaiming ‘that’s me’ with a cheeky grin! My reaction was to half laugh, half cry and whisper ‘yes I know darling’ before hiding my face behind Logan so I could compose myself! This to me just totally sums up this kid and his attitude towards this disease, he knows he is poorly, he hates it and feels it’s unfair and rotten sometimes but he won’t let that stop his beautiful bright personality from shining through and lighting up even the darkest times!

A lot of people keep asking how he is, and truthfully he is up and down but he doesn’t let it stop him. He has his moments of weakness and where things frighten him or the pain gets too much, but luckily a lot of the time his zest for life keeps him strong.

We’ve recently found out that even though only a few vertebrae have noticeable damage, traces of the disease could be seen throughout his entire spine, it doesn’t bare thinking about what might of happened if we hadn’t found it when we did, especially when one vertebrae was almost destroyed in a matter of weeks. We don’t know much about his lungs only that there were small new cysts, when he has his scans in January sometime to check treatment is working we may know more.

He has had 2 rounds of Chemotherapy so far, out of a potential 36+ over the new two years. The schedule is 4 days (with 2 doses on day 1) every three weeks. He has his line accessed every Monday for blood tests and so far his counts have held steady, they may change when the steroids stop early January. He isn’t really suffering too many side effects yet apart from tingly leg pains and weight gain but again this may change when the steroids stop as they counteract some of the symptoms and stop his ‘allergic’ reaction of sorts to one of the drugs that he had before.

We are very lucky that he is at home currently, most of his treatment is done in clinic or at home by the community team, so unless he becomes unwell with a fever we don’t need to be on the ward.

Because he has a central line that feeds directly into a vein by his heart, any fever must be treated as a line infection until cultures are clear, because there is a risk of sepsis. In the case of a fever it would be an admittance onto the ward, so this is why we are very careful with Dylan being in contact with people who are unwell, especially when his infection fighting white blood cell count becomes low from Chemotherapy. This also means we have to be super careful with everything we do to keep the actual line free from bacteria such as dressing changes on the insertion site, and keeping the end of the line clean and dry. We also have to be very careful of it being pulled out of course, this is why he has a ribbon around his neck.. it goes down to a special fabric pouch that keeps his line clean and held safe against his body to minimise the risk of pulling accidentally. Certain activities are off limits though such as contact sports and soft play, which we have had tears about because of birthday party invites sadly that he can’t attend. 

His next round of Chemotherapy does unfortunately start on Christmas Eve and we will have to travel to hospital for a dose on Christmas Day as the community nurses are having a well earned day off. However we are hopeful this will mean that we can still go away for a few days at New Year as was planned and booked before all this happened. 

We wish you all a Merry Christmas, and unless there is any major drama a Happy New Year as I won’t blog again hopefully until we get back from our time away. Keep everything crossed we make it there!! X