I have not been able to write until now, I just never seem to find the time to sit down and think. we are getting on with escalating capizzi and despite my worries about this block it has been a bit like a holiday so far. the fact that Vega only has a hospital appointment every ten days, with one blood draw at home two days before each hospital appointment makes a very welcome change. Vega now had three doses of IV Methotrexate and based on her neutrophil counts and state of her oral mucosa she is tolerating it well so far. she has not had any ulcers, just a few red spots in her mouth and occasionally she would say that her mouth hurts. she is continuing to walk and even went on the school run today with her scooter (she can’t really ride it but she is determined beyond belief!).
she looks well and is acting well too. all this time off, without daily chemo has made me very optimistic and I have gone so far as to feel like this leukemia business is pretty much like a bad case of a childhood illness that takes a little longer to go away. at the beginning of Vega’s treatment and really until very recently I found it hard to imagine that this is actually something that can be cured. that the cancer will go away and stay away. this is not a rational thought obviously because I know the statisitcs and I have heard from children who had it and are ok now. still imagining that there will be a time when all of this is over, seemed impossible. also the fact that we can subject Vega’s body to so much poison, so many drugs and antibiotics, so much blood… walking away from this unscathed seems like a miracle.
and yet, these last few days, I have grown hope and felt the weight on my shoulders has been eased by the lack of hospital visits and procedures.
yesterday was Marsden day though. and nothing drags you into reality quicker than a priest walking out of the childrens’ ward. then there were a group of mums, all of teenage cancer sufferers and all of them there with their children who had relapsed. they chat about who is having what done, how their children are coping, who is new on the ward and who is back yet again to join the relapse club. they talk as if they are sitting in a cafe, like nct mums brought together by new motherhood, only these mums are now part of a club no one wants to be in, ever.
so my idle thoughts about this being merely a bad case of a childhood something, were slashed and then poisoned by a good dose of methotrexate, vincristine and peg. our peg timebomb is yet to explode and thankfully all was well yesterday. only two more of these shots and we will have done it.
our main concern at the moment is food. Vega has been feeling quite sick with the methotrexate and now is on a high dose of anti sickness drugs. these work for the nausea but not for the appetite. she eats teeny tiny portions of mainly unhealthy food, but we have now been warned that should she lose any more weight we are entering feeding tube territory. and while I used to say things like “no ice cream until you had at least one piece of broccoli” I am now glad if Vega asks for ice cream all together. I am dreading having to ‘repair’ these awful eating habits in the future. at the moment Vega eats almost exclusively sausage rolls, sausages, chips, fishfingers (and to her defense all sort of other fish), hula hoops and rice. occasionally we can convince her to have some yogurt, pasta and mince meat. she actually literally starts to gag if she eats carrots, and she is not eating fruit at all. she seems to crave salty foods, which is not that bad because apparently cancer loves sugar. we are juicing, blending, hiding… and she is not having any of it.
here is a picture of her before diagnosis
here is a picture of her with her steroid weight gain during induction chemo therapy (yes it shocked me too)
and here she is now
She has actually grown a lot too over these last four months, another reminder that time moves on and isn’t it amazing that with all this crap being hurled her way, all this chemo, her body is still continuing, not only to work, but better still to function and grow like it should.