Even Stronger

We are flabbergasted by the response of the “Stronger” video.  Initially, we imagined that only our close knit cancer community here at Seattle Children’s would see it.  Who could have imagined over half a million hits in just a few days… and a response from Kelly Clarkson herself?  Just after physical therapy today, Austin Rainbow Bead, the Childlife specialist for in-patient cancer kids (so named for the type of bead Lauren earns with the Beads of Courage program), popped into our room and asked us to join him in the glass block area.  When we arrived, many of the other kids from the video were there, as well as a bunch of media folks.  An open laptop sat on the table facing the kids.  Austin told the kids that Kelly Clarkson had a special message for them. [Insert sound of a bunch of kids and parents screaming, talking, and clapping all at once!] Finally things quieted down and Austin played Clarkston's clip. It was really exciting listening to her talk to the kids.  The media folks filmed them watching and sent a clip to Clarkson’s people, who added the response footage.  They released the full clip to YouTube: http://www.youtube.com/watch?v=nSFrPHWLKJg&feature=share   [Lauren is in an aqua tank and her signature pink pig hat.]  

What a trip all of this has been and after so much hardship the past few months. In the last year, really.  One of the surgeons came by later this afternoon and checked on the wound.  I still cannot believe that the original plate in her leg broke.  What pain this girl has been through!  Apparently, it’s always a race to see what happens first: either the new bone knits on both ends from the stimulation of physical therapy or the plate breaks.  The plate isn’t designed to hold body weight on its own, but body weight is needed on the femur to help it heal faster.  She was doing everything right and feels as though she is being punished for working so hard at physical therapy.  She certainly is a FIGHTER!

Lauren is still in-patient.  Last Thursday we arrived at our PT appointment and didn’t leave the hospital.  As the therapist started to manipulate Lauren’s knee, she told us it felt hot to the touch.  Ugh.  Just the day before we had an evaluation with Sue, one of our nurse practitioners.  I mentioned that the surgical site was starting to “pink up.”  This is exactly the way things started with the last big infection in January.  We were in isolation then and she was treated for MRSA.  Scared the heck out of all of us.  We think the dangerous bit is over—discovering the tumor, finding out it was cancerous, having to relocate to Seattle at a moment’s notice, starting chemo and all the sickness that goes with that, bumping along with all the serious allergic reactions, and then surviving the big surgery and trying to recover, and learning to walk again—and then… BAM!  We know others who have lost their children here, not from the cancer itself, but from secondary causes like infection.  As a good friend we’ve made here would say: Jackass cancer!

After PT on Thursday, we stopped down the hall for a clinic check of the knee.  They ordered labs, did a physical exam, and then “invited us to be their guests in-patient.”  It’s a good thing that by now we keep a bag partially packed for last-minute admission trip.  Reminds me of when I was pregnant and kept the “Go! Bag” ready packed for labor and delivery.  Things we keep at the ready: clothes for a few days; travel toothbrushes and toiletries; a roll of quality TP (Hospital TP is like sandpaper.  Really.  It seems cruel; Lauren needs more torture than she’s already receiving with the cancer treatment?); a current copy of her prescription medicines since out-patient and in-patient computer systems don’t sync; a few canned, non-perishable food items (Who can afford to eat at the cafeteria day in and day out?); and a can opener.  Keeping a partially packed bag at all times cuts our packing time down to about 5 minutes, and time is a factor when we need to get to the hospital quickly.

Due to the type of treatment Lauren receives, we are required to live within a one hour travel window of the hospital.  But they –prefer-- for us to live within a one-mile radius.  Chemotherapy of any type depresses the immune system and the treatment protocol for Lauren’s type of cancer is quite intensive.  She receives a multi-day “cocktail” of chemo drugs every two weeks with no recovery breaks in between.  Dr. Hawkins’ motto is: “Hit it hard and fast.”  Hawkins is Lauren’s primary oncologist and (cue the dinging bell!) the national protocol director for Ewing’s sarcoma.  Ewing’s is a rare and aggressive form of bone cancer.  Most of the folks we know here with bone cancer have osteosarcoma.  The treatment course and drugs are different, but then cancer is still cancer.  We don’t play “one-up” games here.      

So Lauren and I have enjoyed entertaining the troops of doctors, nurses, and medical providers this past week.  We’ve had visits from the O’Dark Thirty rounding orthopedic surgeons, the HemOnc doctors who do their rounds at a much more humane hour, and a spattering of visits from the Infectious Diseases team, brought in to consult on the case.  Of all the blood cultures they have taken, the doctors have yet to find the culprit responsible for the infection.  They are worried that the surgical site is infected, but even more so that the infection might be in the new bone or around all the metal hardware in her leg.  I bet the girl could set off alarms at a TSA check!  To start somewhere, the interdisciplinary team ordered two broad-spectrum IV antibiotics and an IV antifungal.  We’re hoping that her bloodwork from the labs tonight will be good.  Lauren’s white and red blood cells, platelets, and ANC (absolute neutrophil count) must be at certain levels to safely enter (and endure) a round of chemotherapy.  Her bone marrow has been “tired” the last few cycles, and then we had the surgery and infection.  We don’t want any delays that might make her susceptible to a relapse.  It’s so strange to want the drugs that will poison Lauren’s system to within a hair of what’s safe; however, that’s exactly what is required to cure the cancer.  And then the chemo drugs are also carcinogenic, meaning that the cure itself can cause cancer.  Ironic and cruel, methinks.              

I’m just getting to bed now after a long day and night.  We had the exciting Kelly Clarkson thing, all the doctor and therapist visits, a new roommate (and what seemed like 50 of her closest family members and friends all crammed into one half of an already small hospital room), and then a telephone interview from a reporter at the Hawaii Tribune Herald.  Lauren was so excited to talk to the guy.  She was bubbling over!

Fingers and toes and everything else crossed for good blood numbers tomorrow.  The nurse should be back in to draw blood in about an hour.  Until then, I’ll see if I can catch some Zs.  Failing that due to the sonorous snoring from our roommate’s dad, I’ll probably moonwatch from our window.  Fog is rolling in over the trees and across the small patch of lawn that the all-night security lights illuminate.  In these quiet hours I find a small, cherished measure of peace

Dear Ellen

I wrote to the Ellen Degeneres show today. It would be so great for Chris and his work to get national exposure, along with the other cancer fighting kids, their famies, and the hospital staff. When I checked tonight, the "Stronger" video had 23,000+ hits. It's viral--the good kind. More on our own viral, fungal, or bacterial infection woes later. I don't want clouds on this sun shiney moment!

Love to you all.

--P

----------------------

Hi Ellen! 

I am sending a very SPECIAL YouTube link, a video that was filmed by Chris Rumble at Seattle Children's Hospital where my own daughter is being treated for cancer. She is in the video--the spirited young girl holding the FIGHTER sign in the chorus (glasses and a black tank). I'm sending this to you for a few reasons: 1) My daughter is a HUGE fan of yours; 2) There's dancing! 3)The video features Talented Kids; 4) The kids here show bravery and joy in the face of serious illness and should be acknowledged. 

Ellen, this video shows the strength, determination, and perseverance of young cancer fighters, as well as the love of those who care for them. These kids are amazing. It's not easy to be here, but I can't tell you how much laughter and joy fills the halls at the SCCA (Seattle Cancer Care Alliance) wing of Seattle Children's. Our story: We moved to Seattle from our home in Hawaii last July, just days after my daughter's 11th birthday. She was diagnosed with a rare and aggressive form of bone cancer and we had to move quite suddenly for medical treatment. When we aren't in-patient at the hospital, we live at the Ronald McDonald House, a few blocks from Seattle Children's. But our story is not unique. People do what they must to save the lives of their children. We have had dark days, to be sure, but there's joy too. The patients and families here, as well as nurses, doctors, and medical workers, have become like family to us. We help each other live...and laugh.

Stronger

Lauren and Her Auntie Gaby

Lauren is a FIGHTER, as represented so beautifully in this video filmed at the SCCA (Seattle Cancer Care Alliance) wing of Seattle Children's Hospital.  My girl is strong; she is beautiful.  My heart opens and breaks and shatters into a million diamond shaped tears...

http://www.youtube.com/watch?v=ihGCj5mfCk8

News Piggie

We’ve been hanging out at our home away from home, The Ronald McDonald House, doing a whole lot of nothing for the past several days.  The weather has been pretty nice, so it feels a bit like torture to be inside.  Here’s why we have to hang out: after Lauren’s type of chemotherapy, the body’s blood counts start to drop (red blood cells, white blood cells, platelets, the whole shot).  Everything gets nuked during chemotherapy, which makes Lauren particularly susceptible to “bugs out there.”  We get into a dangerous zone about a week after chemo.  That’s right about tomorrow.  Exposure to coughs, colds, viruses, and the like when she has low counts can be life-threatening.  So it’s a little like a self-imposed isolation.

Lauren has more chemo tomorrow, but then we’re clear with nothing to do but physical therapy (physical torture!) until next week or so.  Until then, we’re planning to lie low; we don’t want to do anything to delay her treatment any more than it has been already.

Something I wanted to share.  Lauren and some of her classmates participated in a fundraising event for Puget Sound Blood Center.  As cancer patients, she and her friends have been the recipients of blood products with numerous transfusions for each patient.  Lots of red beads on Lauren’s Beads of Courage strand, about 35' right now (http://www.beadsofcourage.org/pages/beadsofcourage.htm  ).  Lauren attends school at the hospital itself at Seattle Children’s. This allows her to continue with her studies and not fall behind during her treatment.  She is also able to come to the school room with her IV pole and/or have the teacher visit her when she’s in-patient and not feeling well.  I laugh and tell her: “You CANNOT run from school!”  The kids in Lauren’s school painted masks to auction at the fundraiser.  Here’s a link to the news report.  Look for the smiling girl in the piggy hat:

http://www.king5.com/health/Kids-with-cancer-create-art-to-benefit-Puget-Sound-Blood-Center--149314495.html