Monthly Archives: January 2013

How it Goes With a Fever

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We were just about to call it a night and head for bed. I checked in on Phoebe and her little cheeks were hot. She roused and told me she was cold. Not good.

Earlier this morning she was feeling nauseous, but I had just administered her Potassium, and that always makes her tummy feel sick. She vomited a couple of times and we immediately gave her stress dose of steroids, thinking her hemoglobin was probably low since she seemed tired.

She perked up as the day went on, but she would tire out easily and take another nap. All of this isn’t too unlikely since she just completed a heavy duty round of chemo, but when I took her temp tonight it was 101.1 which is an instant call to the hospital. We knew, with her other symptoms and her counts heading down that she would be an instant admit, so Nathan called the hospital while I got to work packing.

This routine is so familiar to us now; 4 sets of clothes, 4 pajamas, her Hello Kitty slippers, fuzzy socks, toothbrush and paste, warm hats and hoodies.

I pack Phoebe up while Nathan packs for himself.

I unhook her water bag from her pole, pack the power cord in her bag. Then meds; cold meds with an ice pack, pill bottles, needles, syringes, alcohol swabs. Then her EMLA cream for her port site. I cut a 2 inch square of Press-N-Seal, put a quarter size amount of numbing cream on it and apply it to her port site so she will be ready to have her port accessed when she arrives at the hospital.

I make a pot of coffee for Nathan, pack her diaper bag with Cheerios, granola bars, stickers, beads, books, paper, pens.

I dress her for the hospital, nice and warm with a fresh blanket. Nathan puts her in the car and I run through the house to make sure we haven’t forgotten anything. I hand Nathan his coffee.

I run out to the car with Babycakes (Phoebe’s baby doll) wrapped in a blanket. “Ooooh Babycakes” she coo’s. “She was crying.”

I tell her that Babycakes didn’t want to be left behind. I kiss her hot cheeks. Nathan hugs me a quick goodbye, it’s 2 am. He has to drive an hour and 45 minutes to Dallas.

“Two more rounds” I say…”Just two more rounds”. And off they go.

Latest Phoebe Pictures

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Beautiful girls!

Beautiful girls!

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phoebe usisng her new found walking ability.

phoebe usisng her new found walking ability.

wating to be admitted for chemo.

wating to be admitted for chemo.

Phoebe getting settled into the hospital on tuesday.

Phoebe getting settled into the hospital on tuesday.

The play room at the hospital opens at 10am. Starting at about 6:30am Phoebe insists on going down to make sure no-one is there yet. On this occasion, she wanted to wait for the workers to show up so that we didn't miss em'.

The play room at the hospital opens at 10am. Starting at about 6:30am Phoebe insists on going down to make sure no-one is there yet. On this occasion, she wanted to wait for the workers to show up so that we didn’t miss em’.

Steward

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I can’t believe we’re really at this place in Phoebe’s chemo treatment. Just this afternoon her oncologist stopped by and we were remembering together what things were like for Phoebe this time last year. She was six days post-invasive brain surgery, was just beginning to get past her tremors and would soon be intubated for a serious seizure. Chemo would begin at the end of January, and by February Phoebe would be in septic shock in ICU fighting for her life.

I am so glad to be here, in this hospital room tonight with my girl as she finishes up this round of chemo. We are in the same room she was assigned to the very first time she came to the oncology floor. This is the room where I pulled out gobs and gobs of beautiful blonde curls that were coming loose. The curls I still save in a Ziploc bag in my dresser drawer. And tonight she is here by my side, head as smooth and shiny as an apple; she has battled her way through sepsis, she has been through intense respiratory therapy when her left lung was collapsing, she has had to re-learn how to swallow how to hold her head up, how to use her fine motor skills and how to walk. She has lived through adrenal crisis, mucositis and hallucinations from her bouts of high sodium.

And she has lead the way with her joy. She has lived in the moment when I could only fear the future. She has brought a smile to others when I have been so inwardly sad that I hardly noticed people around me. Her contageous laugh has attracted a gaggle of nurses to her room to “see what all the fun was about” time and again. She has said “thank you” every time someone drew blood or accessed her port. And she asks everyone she meets “did you miss me?” even if they have never met. She radiates joy, this girl. It’s something other-worldy I can’t explain. But each night when she makes her rounds on the hem/onc floor just before she goes to bed, I see it. In the faces of all who have come to love her here, I see her joy reflected.

When we named Phoebe, I just loved the name. I didn’t know it meant “Brightness”. We chose her middle name “Lucille” after a dear friend who was also a nanny for us when we traveled in missions. I didn’t know Lucille meant “illuminated light”. But my daughter is..a bright, illuminated light. She really is. It is the perfect description for Phoebe Lucille. And I get to be the steward of this bright, illuminated light. What a blessing.

I can’t believe we’re here, so close to the end of treatment. It seemed forever away, and now it is in sight. I know the end of treatment will carry with it it’s own worries and concerns. But for tonight, I will just live right here, in this room that has seen so much, and recount this year with gratitude.

A Wish for Phoebe

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About a month ago Phoebe’s wish-granters came to our house. A very kind husband a wife couple sat at our kitchen table and told us how both of their grandaughters fought cancer at the same time several years ago. It was that experience, and their being blessed by the Make A Wish Foundation that caused them to be volunteer wish-granters for other families fighting life-threatening illnesses.

We thought about Disney World, the go-to for most kids having a wish granted, but we knew Phoebe would not have the stamina for amusement parks. She tends to tire-out easily and get overwhelmed in public places with lots of people. We thought about a room make-over or playground equipment, but she wouldn’t care about her room and she’s not really able to enjoy playgrounds right now.

So we thought about what Phoebe likes to do since she can’t really conjure up a wish on her own. She likes to hang out with her family. She loves to eat dinner together at the table and sing. She likes to share snacks and snuggle up together. She likes watch Dora The Explorer and play playdough with Deacon. And she had never seen snow. “What about a cozy cabin in the snow?” we thought. We could cozy up by the fire, make s’mores, play boardgames, maybe go for a sleigh ride. So Phoebe made a wish for snow and a cabin.

And then the snow came down on Christmas Day. She sat in the bay window and watched the fat flakes as her brothers ran around catching the snow. I think she was confused! The next day we bundled her up and ventured out into the white wonderland our yard had become. She took tentative steps and giggled as Daddy held her hand. When she came back she said “I crunched the snow Mom!” She was delighted.

Make-A-Wish called today and it looks like we’ll be heading to Colorado sometime at the end of this month! We have arranged the dates so that Phoebe’s counts will hopefully be in a good place. It seems beyond scary to go so far from home, but we want to do this while Phoebe is feeling good. Please pray with us that everything will line up just right in her body. I know this will be a treasured time for all of us. And if you’re ever looking for a foundation to give to, Make-A-Wish is top notch. We have been nothing but blessed by Make-A-Wish and The Ronald McDonald House.