It has been almost a month since my last blog post. We had no admissions, which I guess is what counts the most and Vega has been relatively well. My “end of treatment” check list is being ticked plenty these last few days. Vega now had her penultimate lumbar puncture, and yesterday her penultimate dose of Vincristine, the last to ever be given at Kings. This also means the penultimate week of steroids. From now on we will only have ‘lasts’. My worries about a repeat of the immune/liver/blood crash were unwarranted. Vega tolerated her last dose of Vinc well and I hope yesterday’s will be fine too.
We had a respite break in Scotland. This was the second time we visited the Malcom Sargent House, just outside Glasgow. The girls had wanted to go back ever since our first stay last summer. I understand why, it is pretty much a kids paradise- beach, bikes, swings, softplay and arts and crafts, wii, hot chocolate machines and a very extensive entertainment library. Needless to say we had our fair share of Disney films over the week. We met new families, many with children in remission and off treatment, looking well and happy, and that gave us a lot of hope. We also met a family whose daughter had relapsed twice after being diagnosed with Leukaemia when she was not even a year old. The little girl was now seven, still on treatment. A different kind of treatment though I guess, not so much curing but maintaining.
All along Vega’s treatment, I have put things off- not always consciously, but in a way I considered my life to be on hold. It would restart on the 29th of May, I was sure of it. Vega would learn to ride a bike, swim, climb etc when she is finished. I would go to work when this is finished. We might be able to move out of this tiny flat when this is finished. My relationship with all of the children will be better when this is over. I will be less stressed, more relaxed, calmer… but what happens if you do not have that? If there is no end in sight? Ending has a very different meaning to the family of this little girl than to us. It made me realize how much I cling to our ending, how much I need those tick lists and how much of an illusion I have build myself just so I can maintain my sanity and function in a more or less normal way. But the ending, the date- 28th of May- is just that- an illusion. Sure things will get better, I am expecting many will, but who is to say if Vega is going to be ok? She might relapse too, in a month, a year or three. Our lives are not at all like those Disney films the children are watching, singing along to their favorite songs, living along with the characters struggles and hardships and jokes for 100 minutes, an accelerated span of a life that inevitably, unquestionable ends well. You wouldn’t expect it any other way. This expectation that things turn out well because you are a princess, or pretty or funny or the good guy or because the sweet little girl is your child- it creates an inability to think that it will all go very wrong. The families we have met are not in a Disney film, and for some it is unlikely there will be a happy ending. But meeting them for this very brief week made me realize that we ought to get on with life, without being on hold waiting for a magic date. We all should be doing things now or when we can- holidays, visiting friends, learning to ride bike, because really, why wait? There would be so many wasted opportunities to do things if we don’t do them when they present themselves, just because we think an even better time will be around the corner. My life, our lives, it is not a Disney movie. I can not waste 95 minutes just because I am hoping the last 5 will be amazing.
Really made me think. And also made me really sad.