A Little Rain

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Chemo, the double-headed dragon, continues to both protect and punish our little girl.  Lulu’s been sick more often and severely as of recent, vomiting and experiencing periodic, but intense pain in various parts of her body.  We assume it is the accumulation of toxicity caused by over 2 years of prolonged chemotherapy.  I mean, there must be a limit to how much a little 43 pound-er can process, right?

It’s difficult to take on many levels since we’ve been living in (relative) blissful denial over the last few months.  We try to live our lives ‘as if’ there is no cancer … giving the kids and ourselves as much normalcy as possible.  However, an unexpected and traumatizing trip to ER can snap one back to reality in an instant.

The fever came on at about 1 a.m., fast and furious.  It started at 101.5, and quickly jumped to over 103 accompanied by a throbbing headache.  I took Lulu to ER at Children’s and Jimmy stayed home so Max could sleep.  I wish I could tell you it was a quick and easy visit, but it was far to the contrary…  As we checked in, she was shivering and crying, very uncomfortable from the fever.  The first two nurses came in to access her port (appliance that is installed beneath the skin that connects to a vein for administering medication and drawing blood).  ER isn’t very familiar with ports, and Lulu’s is especially tiny and challenging.  After the first nurse poked her twice and failed, I insisted we get someone else.  The second nurse came in and I tried to stay calm for Lulu who was now reaching hysteria, so that she would still have faith in the caregivers.  Two more pokes with the one-inch spike and no luck.  This is unprecedented.  Lulu is now completely losing it, screaming through tears at the top of her lungs “THIS PLACE IS EEEEVVVIIIIIIL!!!!  IT”S EEEEVVVIIIILL!!!!!” begging and pleading with me to take her home.  This almost struck me funny, seeming like something out of the Exorcist.  We don’t use the word evil around the house regularly, and it seemed out of character for her to use it. I firmly asked the nurse to get someone form the H.O.T. unit, and ask for our friend Sal if he’s working.  He was.  I was relieved, but I also knew that H.O.T. doesn’t do a TON of ports either.  Clinic is where the expert ‘pokers’ are, and they only work 9-5.  I knew Sal would at least calm Lulu down, which he did the moment he entered the room.  He and his teacher wife actually babysat for our kids over the summer, and he had been our first night nurse ever.  To say we have a special relationship with him is an understatement.

Unfortunately, he too was unsuccessful.  I later learned from his wife that he had frozen after Lulu winced.  He had come to feel differently about this little girl than other patients and that touches us deeply.  The next nurse that came in for the 6th or 7th poke and seemed to have gotten it in securely, but it wasn’t drawing.  It seemed it was now plugged on top of everything else.  At least the damned thing was in and Lulu could stop being a human pincushion!  Now we would have to wait for the TPN (think liquid Drano for ports) to work its magic.  Sal hung out with us for a little while longer and Lulu really calmed down.  He left and Lulu vomited 5 times.  Ugh.

It was nearing 5 a.m. and after two rounds of TPN, the port finally drew and they could get Lu’s blood counts.  We had to be sure she had enough white blood cells to mount an immune response to the flu, a danger for these kids.  Her counts were high, which was a good sign.  Jimmy and Max arrived at 6 a.m. so I could leave for a job an hour away.  I hadn’t had time to get a replacement, and frankly needed this job since I had been taking time off more regularly to be with the kids.  Lulu’s fever dropped after finally getting Tylenol.  She was stable, calm and sleeping at last.

They all had a long next day as Lulu was transferred to the MACC Clinic where she was administered IV chemo and had to endure the dreaded nose swabs to test for flu.  These are very painful and scary for her, but apparently big brother was a rock-star, comforting her throughout, hugging her through the pain and making her laugh in between events.  He didn’t even complain a bit about the 5a.m. wakeup to go to the hospital.  We are so proud of him.  Now, how can we get him to change the litter box without complaining?!?

She was released the next afternoon with Tamiflu and other meds.  She seemed to bounce back so quickly!  But then the fever rose to 104.1.  Ugh.  We were told we could give her Tylenol for 24 hours, so we stayed on top of that and the fever broke again. This went on for another day and finally finished its course.

She’s continues to be up and down from the effects of the chemo.  When she’s up, you’d never know she wasn’t like every other kid in the world and then some; an amazing creative force.  When she’s down, it scares the hell out of me and is not a gentle reminder of what’s continuing to be present in our lives.  Seeing her in pain and lethargic is … well, you can imagine.  She has been taking oxycodone (you read that right) and anti-nausea medications to help combat these effects.  We can’t give her anything that might mask a fever like Advil or Tylenol.

But, we know we are still the lucky ones.  During this new holiday season, we know far too many families who no longer have their little ones to eat turkey dinner with, to decorate the tree with, to buy gifts for … and still more who are in the hospital enduring their own treatments.  So, I continue to write to you all, about the good the bad and the fuggly of cancer, to raise awareness and hope that this holiday season you might think of one of those kids as your own, and donate in your own way your time, energy or money to help fight this disease.

Love,

A.L.L. of US

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Tootsies and Trips

This morning began with foot in mouth. I’m not speaking figuratively; said something stupid, embarrassed myself or someone else … I’m talking 5 tiny pink painted toenails inserted ever-so-gently inside Mommy’s drooling, agape craw. No, there was no adorable little princess sock protecting me, no pink tights smelling of fabric softener. Just skin on skin contact featuring upside-down duckling-headed five-year-old and finally sleeping mama. Blech! Ptu-Ptu!!! That’s it. We’ve gotta get this girl back into her own bed! I must say, it was the best night’s sleep I’ve had in a long time, much needed after the events of this week and I finally feel motivated to do something today. Perhaps it will be getting Lulu’s little-girl bed out of the attic again, since she can’t maneuver her big-girl bed with her feeding tube. Or maybe I’ll have Jimmy do that while I go to the gym?.

Yes, hubby’s back after another trip. He was only gone 3 days this time, but of course, everything seems to happen when he’s away. The night before last, I dragged myself up the stairs at 11:30 after taking a benadryl, hoping for some deep Z’s. I crawled into bed, next to, HEY, there are TWO kids in my bed! Oh well, there’s room without Jimmy in the king-size (yes, I know it’s an issue and we need to work on this. Don’t call Dr. Phil). I pulled the warm covers up. Really warm covers. Too warm. Shit, Lulu’s got a fever. Shit shit shit! It’s over 101 which means I have to take her in to E.R. Panic. Can’t leave Max here alone, or can I? He’s 9. He’ll sleep. What if he doesn’t? What if he wakes up and starts freaking out. Don’t want to take him to E.R. at midnight and mess up his whole school day tomorrow, let alone have him go through the trauma of being there with screaming Lulu. Who can I call this late? No answer from Jimmy. Call BF in Minneapolis. Ok, I’m not thinking clearly, but she has 2 kids who are older than mine and will know what to do. Sure enough, she says leave him a note, he’s ok to stay, but might not remember talking to me and call a neighbor. I didn’t want to do that to my neighbor, but that was the permission I needed to make the call. Ring. She was so gracious, came right over and slept on the couch.

Lulu and I got into the car and she asked if she’d have to get poked. Of course she would, and without numbing cream, her port would have to be painfully accessed. “I’m not sure baby. I’ll ask when we get there”. She’s still freaking. As I arrive carrying her through the doors on the way to her room, I hear “T, is that you? You look beautiful!”. This is the weirdest thing I can ever imagine hearing right now. Me, in the hospital, stressed-out bed-headed in sweats juxtaposed with this statement. I turn to see a long lost dear friend from high school whom I’ve been trying to find for years. “Laura?” Wow, how nuts is that!?! It turns out she had taken care of Lulu the last time Jimmy brought her to E.R. and that they had clicked instantly. He had spoken to me of the great nurse they’d had that night as well. I long to speak with her and catch up, but between the docs asking questions (yes, she has A.L.L. em, yes she’s on some medications…), Lulu’s screaming and me fighting the effects of the benadryl, all is lost. She leaves me her info and we promise to get together soon. Lulu gets her blood drawn, is poked and prodded, given antibiotics and after 4 hours we are released. She likely has a cold.

Aaah, just another day in Cancerland.

A.L.L. Of Us