Posted by Kimberly on March 28th, 2005 — Posted in Diva Girl, Zen Baby, Oncology Odyssey
First, let me say thank you for all your good wishes. I really feel like you’ve all been with me every step of the way, and I *know* that has helped get me through this nightmare.
Our weekend was lovely. And busy. I have a large family, and most of them came for Easter–We had a lot to celebrate this year. I think Easter may now be my favourite holiday.
I was a little worried about the kidlet invasion–6 children, the oldest of whom is 6 –but things went fine. The bigger ones were well prepped on playing gentle with Zen Baby and the little ones have no interest in her, or aren’t mobile enough to do damage. So that was stressful, but ultimately successful.
I think the gross favouritism shown by the Easter Bunny, who gave Diva Girl a “honkin’ big basket of stuff” and Zen Baby “one measly stuffed chickie,” went a long way towards assuaging Carebear Envy.
My dad just made a comment that it’s been more than a week since the surgery.
See, I’m still living in that “funny time” place. On the one hand, how is it still March 2005? I have lived years these past few weeks. But I’m also still sitting in the chair in my doctor’s office, hearing, “It’s bad. Zen Baby has a 12 cm tumour in her abdomen.” I haven’t really processed that event yet, let alone everything that’s happened since.
The Nurses on the Paediatric Cancer Ward are calling Zen Baby their Miracle. They just don’t get outcomes like hers very often. When we arrived, shellshocked and praying for a miracle, things did not look good. Even a happy ending looked like it would only be after the whole deal: a whack of unpleasant tests, a biospy, bone marrow extraction, chemo, surgery to remove the tumour, radiation, bone marrow transplant–if a match could be found and family wasn’t likely to be an option. And a happy outcome was by no means guaranteed. Or even expected, to be honest.
And then, we got the miracle. Yes, Zen Baby had a whack of unpleasant tests and they were traumatic. But the tests revealed something wonderful (if wonderful and tumour can be used in the same sentence). The tumour was more than likely so rare that the oncologists had to go look it up in their medical databases (I’ll admit it, I’m kinda proud of that ). But it wasn’t, in and of itself, life threatening. In fact, if it had been a normal presentation, it really would’ve been no big deal. But the fact that it had invaded her bowel and was not allowing her stomach to grow and basically bullying all the other internal organs made it much more serious. So, major abdominal surgery. No treat, let me tell you. (Have you ever tried to co-sleep with an infant hooked up to 2 ivs and an NG tube? ) But it was survivable, and she survived. And, barring a bad pathology report, our ride on this particular roller-coaster is over. (And believe me, I have no intention of buying another ticket.)
So, was our 3 week oncology odyssey insignificant? Not on your life. It was the most harrowing experience of my life (and have I ever mentioned that I was once run over by a bus?). I have journeyed to the pits of parenting hell and back. But you know what? I only had to look through the window; I was blessed and didn’t have to walk through the door. Every family who finds themselves suddenly admitted to paediatric oncology hopes/wishes/prays/begs for the same miracle we received. And most of them don’t get it. I don’t know why we did, but I plan to make the most of it.
Earlier this month I wrote: “Zen Baby’s first birthday isn’t about survival. It’s all about how we thrived this year….It’s all about the anticipation.” I had some bitter moments when I felt the universe was mocking me for making these statements, but you know, I stand by them, with one small change: “We have survived and thrived, and we’ll continue to do so.
But it’s still all about the anticipation.
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Posted by Kimberly on March 25th, 2005 — Posted in Diva Girl, Zen Baby, Oncology Odyssey
I just showered for the second time in two days! Oh, the luxury!!!
I’ve barely processed being home. It’s all so….I don’t know how to explain. Showering without any sort of logistical nightmares to work out (well, no more so than the usual when you’re the single mom of an infant and a 6 year old ). Napping in a Double Bed, not a cot. In a room by yourself. Choosing what you want to watch on tv–or to have the tv off! Choosing what you want to eat for lunch/dinner and preparing it to your taste.
Little things. But big things when you don’t even really realize you’ve lost them until you have them back.
We’ve had a good day. Zen Baby is recovering beautifully. We haven’t even filled her codine script yet, and her tylenol intake is irregular. She’s playing, babbling (something she doesn’t do unless she’s in her happy place), climbing and walking (more on how Zen Baby learned to walk in another post, but I’ll tell you now that it involved an iv pole. )
Diva Girl is ok. Pretty emotional today. She was excited for us to come home, but….I think she thought things would be immediately go to normal. Or better. But I’ll admit it; I’m wiped. So while she couldn’t wait to play, I couldn’t wait to nap and shower.
An epic conflict of needs, to say the least. But after some tears on both sides, we played, coloured, watched “Atomic Betty”, showered and napped. Everyone’s happy.
And now my mom is doling out ice cream. Life is good.
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Posted by Kimberly on March 25th, 2005 — Posted in The Ladies, Diva Girl, Zen Baby, Oncology Odyssey
We’re home!!!!!!
Well, my mom’s home.
But still, not the hospital. And we’re not AWOL right now. We’re RELEASED!!!!!
Diva Girl needs some “mom time” so I’ve got to go. Just wanted to share the latest, greatest news. I hope everyone else’s Easter is as fabulous as mine is going to be.
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Posted by Kimberly on March 24th, 2005 — Posted in Diva Girl, Zen Baby, Oncology Odyssey
It’s nice to share some joy for a change.
Last night I talked them into letting Zen Baby return to breastfeeding, which made everyone’s night better. And honestly, I understand about not wanting to tax her poor little digestive system, but apple juice over breast milk??? Come on!!!!
This morning, they took her off of the morphine drip (which had been very speedily weaned to a negligible level) and removed the iv! Yay!
So now she’s totally mobile again Gramma will be giving her a spongebath today while I’m at work as she’s also very grubby. And then she’ll wear her own clothes for the first time in almost a week. Milestones abound today!
Diva Girl came up last night and had a lovely visit. I thought Zen Baby was going to pull some stiches, she was so excited to see her. Diva Girl was, in true 6 year old fashion, more concerned with acquiring sharing rights to her sister’s new Care Bear –the fact that she already has several of her own was apparently irrelevant .
Oh! And ask me where I’m typing this from!!!!
Go on, ask!!!
HOME!!!!!
Sorry, that’s a bit of a tease. We haven’t been released yet–Zen Baby is still at the hospital with my mom. But my freshly showered butt is sitting in the comfy rocking chair in my parents’ livingroom typing away on the laptop.
Ahhhh.
Have I mentioned that we’re learning to enjoy the simple pleasures?
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Posted by Kimberly on March 23rd, 2005 — Posted in Zen Baby, Oncology Odyssey
Regan took a few steps in the playroom just now.
And is currently kneeling on the floor, playing with blocks.
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Posted by Kimberly on March 23rd, 2005 — Posted in Zen Baby, Oncology Odyssey
Was last night better?
Hmmm. Yes and no. They took the nose tube out, and the mittens came off. That was definitely of the good.
Zen Baby was awake, alert, and responsive. Also of the good. Sort of. Because this whole attachment parenting (which I was down with looong before I ever hear of Dr. Sears) is really not designed to accommodate the needs of families in hospital. See, if Zen Baby doesn’t want to be down, the solution to that problem is usually to just carry her with me and carry on. But putting her in a sling or carrier right now isn’t really practical–did I mention the tubes? And being a big meany and just putting her down for a sec while I do whatever it is I need two hands for isn’t an option here either. She’s scared, and she needs her Mummy. I get that.
But Mummy needs to eat something before she passes out. And pee before she explodes. And, after 7 hours or so, pump before she looses all sense of decorum and dignity. Oops. Too late.
See, they make you buy a $25 attachment for one of their electric pumps at the hospital. Ok. Makes sense. Not too keen on using a community model anyway. And they keep the electric pumps in a lovely little softly lit room filled with soft music, comfy rocking chairs, and lots of parenting magazines. Also OK. Except, as I learned last night, if Mohammed can’t get to the mountain (so to speak), there ain’t no way they are bringing that mountain to Mohammed. NOT OK.
I’d like to say here that everyone should be as lucky as me. I have a friend how is so truly wonderful that when I call, sobbing incoherently on the bat-phone, she doesn’t stop to assess the validity or rationality of my needs. She just puts her own not inconsiderable stuff on hold for a bit and does her utmost to meet them. Thank you Kirsten, who grabbed her own pump and rushed it to the hosptial.
Eventually, SuperGrampa also arrived and stayed with the baby while I pumped, ate, peed, and just generally got myself back together. Then he settled Zen Baby in her crib, and I got about 90 minutes of dead-to-the-world, bed-to-myself sleep. Of course, Zen Baby was in bed with me by 2 am (after a brief dalliance with some motorcyle building show on the discovery channel in the Lounge). And it was a pretty good night.
Well…one more thing. Remember how I complained about the rasping? Rasping is good. Rasping is so much more reassuring than the silent breathing. See, with the rasping, at least you know there is breathing. Silence, not so much. But I didn’t push the call button for the nurse (mostly because Zen Baby was on top of me and I couldn’t reach it without waking her and man, no one wanted that).
So, small victories. Oh, speaking of victories: Guess who had Apple Juice this morning!!!!
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Posted by Kimberly on March 22nd, 2005 — Posted in Zen Baby, Oncology Odyssey
I’m kinda whiny today.
Last night was the longest night of my life. You know that point you hit somewhere in the middle of week two with your newborn? Where you can’t even really *remember* what sleep is anymore? Last night made that look like cake.
If she wasn’t beeping, she was rasping. If she wasn’t rasping, she was crying (or trying to). There were tubes all over her–even one coming out of her nose. Her hands were bandaged so that she couldn’t pull the tubes out. The full dose of morphine interferred with her breathing. She’s still not allowed to eat, and doesn’t seem to want to yet.
And, since she freaked out if not in my arms, I haven’t been able to pump since 1 am. I spent most of the night trying to figure out how to get comfortable in one of those hard wood, Granny style rocking chairs (with a broken arm, no less) while clutching a post-op baby and not tangling or pulling out any of her various lines. Fun times, I tell ya.
And, because I’m crazy, I topped off that evening by coming in to work today. I think my judgement might be a bit off. (They’re watching a movie. And if we finish with that, group work!!)
But seriously, thanks for all the prayers and good wishes yesterday. I was deeply touched.
Hopefully, it all gets better from here
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Posted by Kimberly on March 22nd, 2005 — Posted in Oncology Odyssey
Now, let me tell you about the lunacy of the hospital bureaucracy. Some things are just silly, and need to be dealt with on that level.
My all-time favourite was the lowly med student who was sent to do the scut work of filling out Zen Baby’s preop paperwork. Including some sort of standard form they have. And you know, the first time they just read the form by rote, I just went with the flow. But the second time I was being asked questions like: “Do you know if Zen Baby has been pregnant in the last 3 months?” well, that’s just an invitation in my mind.
So, for your enjoyment (and certainly mine) the top two stupid questions to ask the mother of a 12 month old, and my answers.
“Does Zen Baby consume more than 3 alcoholic drinks in a day?” No. Absolutely not. I’m very firm that she’s not allowed to have more than 2 martinis a day. Unless, of course, it’s a special occasion.
“Has Zen Baby been pregnant in the last 3 months?” I don’t think so…but she hasn’t had her period in months, and her belly *is* swelling. Maybe that’s the answer!!! My baby doesn’t have a tumour! I’m gonna be a grandma!
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Posted by Kimberly on March 21st, 2005 — Posted in Zen Baby, Oncology Odyssey
ZEN BABY CAME THROUGH THE SURGERY FINE!!!!!!
They got the entire tumour (they think) and didn’t have to take anything else. She didn’t need any transfusions or anything, and now I’m just waiting for her to wake up.
Thank you, God, Universe, Keeper of Vibes….. And thank you, for your generosity of spirit. I couldn’t do this without you.
Must go watch over the baby!!!!!!
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Posted by Kimberly on March 21st, 2005 — Posted in Oncology Odyssey
OK. Big breath.
I am so sorry for putting everyone through that last post. It was very melodramatic and unfair of me. I have a bit more perspective now, and while still terrified, have returned to the confident place where Zen Baby is not going to die.
She’s just not.
Yes, it’s major surgery. But she’ll be fine.
Major surgeries are performed every day without any complications whatsoever, right? And, even if there were a bobble, that’s one fiesty little girl I’ve got. So she’ll be fine.
Everyone say it with me: “She’s going to be fine.”
Big breath and back to the waiting room (where I turned off the therapy show where some guy was helping a family come to grips–in a “special two part episode”–with the imminent death of a family member. Uh, tasteless much?).
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