ARCHIVE: A frustrating “state of the union”

Katie Cutie with her GangSigh. We are so close. SO CLOSE to the end. We have less than 7 months left until Kate’s end of treatment date and that feels so damn good. It’s so close we can see it, count it down and very nearly feel it in our grasp. But it is too damn far off to feel REAL. It isn’t close ENOUGH.

We’ve been in maintenance now for 9 months and it has been a long ass ride. No, it isn’t anything like front-line but it is still a really long and arduous process and there are still so many things that just ARE. Things we deal with that just ARE. No changing them, no getting better…just part of our life for another 7 months. Maybe longer. Who knows what post-treatment will be like for us. We haven’t even yet discussed late effects of chemo, what this might have done to her psychologically…ugh, I can’t even go there.

Kate is BORED. She is a really bright an funny little girl. She is more ready for school than any other child I have ever encountered and yet…we have to wait another 7 months. (No we don’t HAVE to, but we made a decision to keep her out of school during treatment to avoid any unnecessary exposure to illness.) We have tried music classes, gymnastics and the like. She’s just not interested. She doesn’t really know how to interact with kids that well; she is starved for peer interaction. She speaks like an adult because she’s only ever around them. She starts ballet in a few weeks and I’m trying to remain hopeful. I just long for spring & summer when she can get OUT and ABOUT and say so long to this frigid weather, too.

Vincristine continues to wreak havoc on her little body with neuropathy; she still has some trouble with walking and balance and needs a lot of work on strength. But it also tears up her poor tummy – all but halting her already challenged “system.” Vincristine is very effective in causing constipation and boy does it ever. We have her on heaps of medication to counteract the side effect that works sometimes…other times not. So it hurts her to go. And that scares her. Which results in us effectively having to re-potty train her every three weeks after she gets her cycle dose.

Steroids are still a goddamned pain in the ass. There is nothing more I can say that I haven’t already. Some weeks are better than others, but we are always on eggshells, we are always battling tummy pain and always wondering what little infraction will set off her roid rage.

Weekly clinic visits are draining every hour of vacation & sick time I have. I have a beyond understanding employer and a fantastic team who rallies behind me. But still. It’ll be late 2015 before I can take a vacation day that does NOT involve sitting in a chemo chair holding my child down while she looks at me and pleads with her big blue eyes. Relaxing, no?

Speaking of those weekly clinic visits…the week 1 access & chemo (each take about 5 minutes total) has become an all out war. Kicking, screaming, gagging…she is just DONE with all of this and we still have 9 more cycles to go. The finger pokes? Yah, those aren’t any better ether. Nothing is getting easier, it just IS.

We are fine. We are all “fine,” but we are just really, really tired. Really, really OVER THIS. O.V.E.R. T.H.I.S.

Leave a Reply

Your email address will not be published. Required fields are marked *