Long overdue…

Yes, I owe you all a blog post! It has been ages since I last blogged. Where to start?

I have had back-up these last two weeks- my family is over in London from Germany to sweeten our summer holidays. My mum and sister arrived nearly two weeks ago, my sister left after a week while my mum stayed on and now my dad has arrived yesterday to take my mum back with him this coming Sunday. Back-up has made my life so much easier. Gone are the worries about where to leave Lyra and Alys when Vega is due in hospital, I have constant help with Alys and her monkey impersonating ambitions and although there is more washing up, it is just so much easier done when it is all shared.

Vega’s regime has been relatively ‘easy’ these last two weeks, at least in terms of hospital appointments. Vega had her third and last dose of Doxorubicin last week and I am glad to make another ‘done and never again’ tick on my chemo flow chart. The red devil has not been too bad at all, although we will only find out if it has affected the long term function of her heart at the end of her entire treatment when she will have another ECHO, in a good 22 months or so.

The steroids, whereas seemingly easy during the first pulse week, hit her hard this last week. She was so depressed and sad, tired and obsessed with only the blandest foods, I found myself literally counting down each administration-14,13,12,11,10, ahh single digits! 9,8,7,6,5, come on!! 4,3,2,1, DONE! Although both my mother and my sister were here, Vega does rarely allow anyone but me to help her with anything. When on steroids she is incredibly needy and it so very much wears me out and down. I am feeling sorry for her, of course, but I also get angry and frustrated with the whining, and crying and the constant constant constant demand for food. She will have 5 days of steroids each month when she begins Long Term Maintenance in September. I will probably dread those five days every month for the next 22 months.

Only good thing about the steroids is that the effects fade as fast as they come. Usually given every twelve hours, you can actually already notice an improvement in Vega’s mood just 13 hours after the last dose. The steroid ‘hunger’ lasts a little while longer and Vega is still eating a good 5 meals a day two days after her last dose. Her face has blown up again too, chubby cheeks, and so is her stomach and the back of her neck, all typical for steroids. Her legs are still just as skinny and she often comments that they feel weak or tired. She is walking but I can feel her shake when I hold her hand.

So, the first part of this block is done- Re-induction chemotherapy tick. Next is Re-consolidation where we are revisiting Cyclophosphamide and the blood killer Cytarabine. We commence with this part next Tuesday as well as Vincristine and Mercaptopurine. Another toughy…

Speaking of blood- Vega’s counts have been surprisingly good. I’ve had a bit of a paranoia mum moment last week and thought Vega looked pale and was breathing shallow and quick (all signs of low HB, her red blood cells) so I dragged the poor little sausage into Kings for an unscheduled blood test but- hey presto- her HB was above 10, which is very very good! She has been neutropenic only for a fraction of this first part of delayed intensification but as we know from our first Cytarabine experience we are going to go down!! As we walked into Kings last week for that blood test I felt like I haven’t been there for such a long time and it is kind of true, because it has now been a whole month since Vega’s last admission. That is good of course, but somehow I can not shake this feeling that with each day that passes we are also one day closer to our next trip down to Toni and Guy ward… Today Vega felt hot and I took her temperature-37.7! Yeeezzz! Anyway, it seemed to have settled so I just try to relax.

Just a note about my fundraising drive- it is looking great! Thank you all who have donated or who still are considering to donate. My team can be found at the bottom of my fundraising page and all donations to Beccy or Jo will be added to our team total as well as helping them to achieve their targets too.

Last but not least, I wanted to share with you all a picture my sister took of Vega last week between her steroid weeks, being happy and looking so incredibly beautiful- even if I say so!