So looks like we haven’t outwitted the dietician. We only get 2 days instead of 7 to get Ruby eating post treatment. We’ve only done the one treatment and there are 5 this round. This means…..*sigh* we will have to go with a feeding tube. It’s so common that it’s rare a kid in here doesn’t get one.
So with that decision made by the staff and some gravol, Ruby is hiding in sleep. I wish I had my book here, I’d post it for you. I did it as an art piece in an effort to get into Simon Fraser 16 years ago to do a masters in Interdisciplinary art. Not a brag or anything…just a “wish you could see it” because it’s odd how something I wrote that long ago applies here. So closely. I’ll put it up when we get back and you all can read it.
So I’m working with the play therapist today to get Ruby over her fear of the feeding tube. My worry is….Ruby gets stubbornly mad about things in here (which I find good…means she’s still talking) but it’s worrisome when she submits by disappearing. It’s time for me to step aside on this one I fear and once I’ve tried all the tricks I know of to get her to eat then I’ll just have to let it be as it is. Ie: feeding tube. One mom told me she feeds her kid all the healthy stuff her son won’t eat and we laughed and laughed at all the things you could get in them that you can’t if they can taste it. So there are some upsides to this. I can tell her all the stuff I fed her when this is all done and she can be mad at me later.
Back in, first round of chemo meds on their way in, Ruby being woken up every 2 hours to pee, I’m running David Myles nonstop till I drop…probably around 12 or so. Then they will have to wake me too. Saying hi to everyone today in the waiting room, sharing stories, waving to moms and dads I am getting to know, updates from each other regarding surgeries, unanswerable and unanswered questions. We smile weakly and reply to the ridiculous “how are you’s” which we all ask because we are trying to make this as normal as possible. The big conversations will be saved for out of earshot in the kitchen later in the night. The ones where we exchange drug information, solutions for eating and how we can support our wee ones. Our room looks out on a corrugated metal wall. I’m not sure how long we will be in this room. I’ve already put the word in for a better room but I haven’t hit the right nurse yet. I will try again on the next round depending on who it is. The quad that we are in (4 rooms that face each other with the very noisy tv/playroom) is the worst place to be for a longer stay. Some nurses get it but other’s don’t. Gotta find the one that does. Then maybe we can move into our fav when someone else goes home. Lots of kids are here for a week at a time. I know of 2 others down here that are here for months and out for the odd day like us. The bone marrow kids don’t get to go home for months. Isolation step down.
What can I tell you? Ruby is mad as hell at being woken up again, hooked up again and restricted. She doesn’t want any of the meds by mouth tonight so I’m going to wait and see if she will take it in the next 2 hours. I have to wake her at 11:15 to pee. I’m tired. Tired the moment we walked in here. I joined a Facebook page that’s supposed to function as a support for other parents of Pineoblastoma kids. It was so depressing that I haven’t gone to read it since. I posted our story and then read about 3 more. There are only 75 people on the page. This is because there are very few kids fighting this. Or moving it. Or whatever. All I can think of right now is this verse from David Myles “I will give you all I’ve got to give, and I’ll never give up.” And that’s that. Goes for both my kids.
See? Maybe I have a funny perspective. I’ve had 45 years to live my life and it was good and crazy and sometimes not so good but of my choosing for the most part. But I’m a grownup. I don’t need to worry too much about my needs or future besides food, water, shelter and the support of my friends and family. Which I have. But the rest of me can just wait. I have a kid who is in danger of losing her life. I’ll just focus on healing that.
I have to say my little pleasures stretch a long long way. Little things like my every couple of days walk to the store, the hugs I get from Holling when he shouts “mama!!!” when he sees me in the hall, Ruby laughing when playing, walking in on Ali and Ruby and being told by Ruby to “get out!!!!” as she really enjoys her precious time with Ali. So many little things. I bought Holling a little helicopter watch and he was SOOOO thrilled. This little something makes me happy. The best thing I can do through all of this is to stay simply in what is – in the moment it is and to just push joy and bliss into the cracks. It’s all I have to do really.