Archive | March, 2013

Today IS Another Day

29 Mar

Novartis Clinical Trial Protocol 11-007:  Phase I, Multicenter, open-label dose escalation study of LDK378, administered orally in adult patients with tumors characterized by genetic abnormalities in anaplastic lymphoma kinase (ALK)

Cycle 1, Day 1 (March 28)

5:00 AM:  “It’s wake up time” as Joe would say.  I don’t really do 5 AM, but it wasn’t very hard waking up this morning.

6:17 AM:  Departed the Hampton Inn in Central Philadelphia.  I did manage to grab a cup of coffee and cold pastry in the lobby while waiting on our car.  The pastry was so gross I pitched it in the trash after one bite.  It’s really just as well, because Chip can’t eat, and I always try not to eat in front of him on days like this.

6:53 AM:  Arrived at Fox Chase Cancer Center

7:15 AM:  Vitals recorded, 1st blood draw of the day and urine sample collected.  Chip finished reading Francona:  The Red Sox Years that Calabro sent him while we waited on his labs to return while I got caught up on e-mails and texts.

9:00 AM:  Visit from the oncologist’s nurse who is managing our trial.  She walked us through our upcoming schedule, so of course the “scheduler” in me had my FDP out trying to figure out who can fly up or down when to stay with Joe and Crosby.  We have to be here the next three weeks in a row and three out of five weeks in May.  I see many fun Wednesday night dates in our future!

9:15 AM:  EKG and 2nd blood draw

9:26 AM:  Chip swallowed his first dose of five LDK capsules.  Yeah!!  I’m starving though.  Being a supportive wife isn’t always easy.

10:26 AM:  3rd blood draw

10:43 AM:  Chip just fell asleep so I scarfed down a cup of warm yogurt I swiped off the Hampton Inn breakfast buffet and stashed away in my purse.

11:26 AM:  4th blood draw.  Now Chip can finally eat.  Yeah!!

11:52 AM:  Nasty ass lunch in the cafeteria and quick call to Mom and Dad to check on the kids.  One might think you would be able to find healthy, nourishing food in a hospital of all places, but it’s exactly the opposite.  The caf’s offerings included hamburgers, hot dogs, pizzas, onion rings, etc., but not the delicious ones you find at a ballpark.  It was nasty 1 1/2″ thick crust cafeteria-style pizza.  If you are going to cheat, you at least want it to be with delicious and quality badness.  Maybe that will become my mission in life–to promote nutrient-rich entrees and install juice bars in hospitals and cancer centers so their food can compliment the healing powers of the medicine.

1:05 PM:  Back to our curtained room in the clinical trial unit.  Chip is really cold and tired but feeling fine otherwise.

1:26 PM:  Blood pressure and temperature check, 2nd EKG and 5th blood draw

2:14 PM:  Chip is getting cranky.  I told him he better be nice to me if he wanted a ride back to the hotel tonight.  Usually I would flash him to boost his morale, but it was SO cold in there.  The flashing will just have to wait.

2:43 PM:  Reading the March issue of Harper’s Bazaar while Chip watches The Fugitive.  Just ate a peanut butter and jelly Lara bar.  It was pretty gross, but I just tried to focus on the fact the wrapper promised to “lift my vitality and provide energy with every bite.”  Nom, nom.

3:01 PM:

Me.  “It’s really boring watching you get treated for cancer.”
Chip.  “Thanks.”

3:15 PM:

Chip.  “What are you doing over there?”
Me.  “Nothing.  Killing time.”
Chip.  “Don’t you get snippy with me.”
Me.  “I will get snippy!  My butt is going numb from sitting in this chair while you are over there in a recliner!”
Chip.  “I’ll trade you a recliner for cancer.  Well, actually, I wouldn’t give you cancer.”
Me.  “Thanks.”

3:26 PM:  Blood pressure check and 6th blood draw

4:02 PM:

Chip.  “You are sucking the fun out of this room.  Will you please just go for a walk?”
Me.  “No, that would be the cancer.  I AM fun.”
Chip.  “Good point.”
Me.  “I am full of good points.  Will you please turn the tv down?  I would hate to get kicked out of here.”
Chip.  “Now that would be some shit, wouldn’t it?”

4:26 PM:  One more hour to go.  We are absolutely delirious at this point, but we can do it.

5:00 PM:  Finished my magazine and now ready for spring.  Structured blouses in, jackets out.  This is not good for me.  Pajama-wide or skinny pants in.  Check.  Can rock both of these.  Geometric prints, arts & crafts, textured fabrics and neon snake skin.  Check, check.  Ruffles in.  Can do.  Also learned my haircut is in style so glad to have that going for me.  Also banged out a few thank you notes for baby gifts to Crosby.

5:26 PM:  Final EKG and blood draw of the day.  PTL!!  We made it.  Let’s blow this pop stand.

Me.  “Good work today.  We make having cancer fun.”
Chip.  “Well, I don’t know I’d go that far, but I see what you are trying to get at.”

6:15 PM:  Returned to hotel

6:45 PM:  Chip was feeling well, not coughing much, had an appetite, wasn’t experiencing any nausea, and we both wanted to move and get some fresh air after being cooped up inside of our curtained room all day long, so we decided to walk the 1 1/4 miles to dinner.

7:20 PM:  Celebratory sushi and sake at Fat Salmon

9:00 PM:  Walked back to hotel and grabbed a few Philly pretzels out of the lobby to take home with us, and it’s soon to be lights out.

It’s been a long but good, good day for us.  We are just as happy as can be tonight that we are finally fighting back again.  The stronger the cancer gets, Team Kennett just manages to get even stronger.

We report back to FCCC at 9:00 AM tomorrow.  They will check all of Chip’s vitals, repeat the EKG, draw blood, administer his second dose of LDK and send us home until this time next week.

We got this.

From Chip

28 Mar

Five months ago this week I was told I had Stage 4 Lung Cancer, that there is no cure, and I most likely had one-two years to live. It was obviously shocking and overwhelming. Sheila and I arrived in Philly this evening ready to start the next phase of this battle in the morning, and I once again find myself overwhelmed.

The love, support and generosity all of you have shown Sheila, Joe, Crosby and me has completely blown us away. The amount of money that has been raised in the last 48 hours is staggering and we are so grateful for it, but this is about so much more than that. It’s about each of you collectively supporting us emotionally, physically and now financially. You all have made such a difference. Team Kennett continues to inspire us. We’ve got this.

(Reposted from Chip’s Facebook page)

chip

Sheila says: “Those cancer cells just thought they were going to get to do some more growing today, but instead, they are getting bitch slapped up in there!!” (at Fox Chase Cancer Center for clinical trial)

chip2

“The Cros was too concerned with the Hoyas blowing up her bracket to smile for the picture.” (March 22)

Training Day

27 Mar

Cletus continues to find ways to inspire Team Kennett.

From Ginny J.: Support the Next Phase of Team Kennett’s Fight!

26 Mar

Our dear friend Ginny asked if she could post her email, originally sent last night to the Lotsa Helping Hands group, to the Team Kennett blog. So with incredible gratitude to all for everything our friends have done to help us weather this storm, here’s her loving note:

Teammates,

The outpouring of love, support, food, and other assistance that Team Kennett has provided to Chip and Sheila and their kids since Chip’s diagnosis and Crosby’s birth last fall has had a profound inspiring effect on everyone in their family. There are no words to express the gratitude they feel for this generosity of time and energy and money, but please know that it has all been absolutely indispensable in helping sustain Chip and Sheila through this fight.

The physical, logistical, and emotional burdens of raising Crosby and Joe in a happy and stable home while treating their dad’s cancer are simply unfathomable, an ever-present 24×7 challenge that even those of us who have seen it up close can’t possibly grasp in all its minute-by-minute dimensions. But with Team Kennett’s support from the very beginning, Chip’s and Sheila’s incredible loving strength, resilience and good humor has carried them through all the ups and downs thus far. They’re battling this evil disease on multiple fronts, giving it everything they’ve got, and more than holding their own. Let’s help them to keep on keeping on as they enter a new challenging phase.

Later this week Chip will begin a clinical trial for a promising new drug, and the trial will add new burdens on top of those they have navigated in recent months. Several multi-overnight trips to Philadelphia every month will bring additional challenges, disruptions and costs. In best case scenario, travel and medical and caregiving expenses arising from cancer’s unwelcome intrusion into this lovely family’s life will cost the Kennetts about $11,000 per month out of pocket for the next several months, with the potential for additional unknown expenses in the future.

In the coming weeks we will establish a formal fund to support them over the long haul, and soon we’ll be organizing events and get-togethers to support this effort — more on all that to come, stay tuned — but in the meantime you can make a donation immediately at www.giveforward.com/supportteamkennett . The need exists right now, so please give what you can and forward this email to all who love the Kennetts and might be able to assist.*

Screen Shot 2013-03-26 at 9.11.49 AM
Let’s help them take care of the next couple months, with a goal of raising $22,000 in the next two weeks.

Thank you again for everything you have already done and continue to do to help this extraordinary family take on this challenge. There will be more ups and downs in the coming months, but every day Team Kennett is gaining strength and collecting additional reserves of love and support. Ultimately we expect that this strength and love and support will outlast the cancer. Let’s help Chip and Sheila make that expectation reality.

With love and gratitude,

Ginny

*Important Ethics note for Senate employees: There are no rules against Senate employees making donations, but Senate Ethics rules prohibit Senate employees from soliciting donations, so Senate employees should check with the Ethics Committee before forwarding this. Senate Ethics rules also allow for donations from registered lobbyists who are friends of the Kennetts. If anyone wants to help but has questions about these issues, let us know and we’ll get an answer for you asap.

Walking in Circles

18 Mar

May I e-mail your oncologist?  “If he is experiencing shortness of breath while at rest, he needs to go to the ER tonight.”  Shit.  We should have been in the ER on Friday night then.  “I’m fine.  We’ll go see Dr. D. in the morning.”  I think this is probably going to have to be my last time to pump.  “You have that Southern look about you.”  What does that mean?  “You are all dressed up and smiling, but you actually look quite sad underneath.”  “I am being admitted to the hospital.  Now.”  Ok, I just picked up Joe from school.  Let me get him home and think.  I need to figure out what to do with the kids.  “Dr. D. is waiting until you get here.  She wants to talk to us both.”  Joe Bear, remember how Daddy wasn’t feeling well this weekend?  Well, Momma took him to the doctor this morning and now he has to spend the night at the hospital, so I am going to take him his toothbrush and pajamas.  I’ll see you in the morning though, ok?  I love you.  Good night, Cros.  “There are new tumors.  The Xalkori is no longer working.  This is a major setback.  I am so sorry.”  But it’s supposed to last for anywhere from 6-24 months.  How long has it been?  Calculate, calculate, calculate.  Only 12-13 weeks.  Shit!  Ok, ok.  We’ve got this.  We’ve still got this. “Can you please go check on her husband?  We were told she could go back to see him well over an hour ago.”  “Code Red.  Code Red.  The hospital is experiencing a Code Red.”  Flashing lights.  Make that stop.  I’m freaking out now.  What is this Code Red?  “Mrs. Kennett, you may come on back, but we’ve had a difficult time getting his pain under control.”  Looks like somebody shaved your chest while you were drunk and passed out, buddy.  I want the Sharpie.  “We’re here and in the waiting room.”  He isn’t ready to see them yet.  “They are on their way back.  I’m so sorry.”  No!  Respect him.  RESPECT him.  “Only two people are allowed back here at a time.”  Shine bright like a diamond.  Shine bright.  Valentine’s heart-shaped plate.  Joe, do you know where your heart is?  Let’s find it.  There it is.  Well, Daddy’s heart has water all around it, and that water is not supposed to be there, so the doctors had to poke a straw in him like a juice box or a milk box so they can suck all of that water out and make him feel better.  “Ok.  Can Steve and I play with the balloons in the basement?”  “You need to get some sleep.”  What’s next?  “What’s next is you recover from surgery, and then we figure out your treatment options.”  And now I’m all alone again, nowhere to turn, no one to go to.  “Do I go back on the Xalkori?”  “No, there is usually a 30-day wash out period before you can start a clinical trial, so if you want to look at it this way, you’ve already burned five days on the clock.”  “I would stay on the Xalkori.  Who’s to say it’s not still working on some of the tumors?  It’s better than doing nothing while figuring out the next step.”  “If we can’t find a trial for you, then I’ll have to start you on traditional chemo, but your body is too weak and compromised to withstand that right now.”  “You need to eat.  You need to gain some weight.  You need to consume 2,600 calories a day.  Now is the time for you to eat two pints of Ben & Jerry’s ice cream a day.”  But, sugar feeds tumors.  He can’t eat ice cream.  Don’t tell him that.  Tick-tock, tick-tock, tick-tock.  “You can’t lift anything over five pounds for the next six weeks and can’t drive a car for the next two–or until you are off all pain meds.”  He can’t pick up the kids.  Without him, the world around me changes.  The trees are bare and everywhere the streets are full of strangers.  Joe, Daddy has a boo boo on his chest just like Momma did on her tummy when I came home from the hospital with Baby Crosby.  “Do you want a Lightning McQueen Band-Aid, Daddy?” “You can be angry, you know?  You don’t have to be so strong all of the time.”  “Mommy, I don’t want to play with anybody else.  I just want to play with you.”  “You have to stay strong, Sheila.  Chip is pulling his strength from you.”  “Mommy, I’m sad.”  Why are you sad, Joe?  “I don’t know.”  Ok.  Sometimes Mommy gets sad, too.  Do you want to hug until you feel better?  Hug, hug, hug.  “Mommy, my tummy hurts.”  Why does it hurt, Joe?  Do you need to go to the bathroom and get some poo poo out?  “No, I had too many treats today.”  “You need to go lie down and take a nap.”  “Have you eaten today?  You need to remember to eat.”  “You have to stay strong for the kids.”  My God, I wish there were two of me right now.  One who could go downstairs and be strong and take care of this family and one who could just crawl into bed, pull the covers up over my head and sleep.  Have I shampooed my hair yet?  I can’t remember if I washed it or not.  I guess I’ll just wash it again.  But maybe I’ve already washed it.  I just don’t know.  Left foot, right foot.  Repeat.  “Mrs. Kennett, I know you have a lot going on at home right now, but Joe just threw up at school if you could please come pick him up.  And he can’t come back for at least the next 24 hours.”  “I want to hear a special song, Momma.”  Ok, we can do that.  What do you want to hear? “Something ’Bout a Truck.”  Play “Something ’Bout a Truck.”  “Playing ‘Something ’Bout a Truck.'”  There’s something ’bout a truck in a field and a girl in a red sundress with an ice cold beer to her lips begging for another kiss.  Parenting at its finest.  “You take care of me and Crosby and you take care of Daddy and that’s why you’re the Momma.”  Tick-tock, tick-tock, tick-tock. “They are sending me back to the hospital.  He thinks I have blood clots.”  “Would you both like some time alone to review these documents?”  Yes, please.  “Who do you want to make your power of attorney if you become incapacitated and unable to make medical decisions for yourself?”  “My wife.”  Inhale, exhale.  Repeat.  WHY do they make so many Easter baskets to choose from?  I just can’t make a decision like this right now.  Focus.  You can do this.  Just pick one.  Wait, what is that?  Oh my gosh, are you kidding me?  I’m seriously getting my period right now?  My first one in over a year right here in the middle of Target?  Ok, just buy the fucking Easter baskets, save the receipt and return what you don’t end up using.  You can deal with this later.  “I would be happy to schedule two or three appointments with you, but I have to be honest, I’m not really taking new patients right now.  Do you think that would be enough?”  Well, I don’t know, Doc.  I’ve never really gone through anything like this before.  You tell me.  Do you think you can fix me up in two or three hours?  Or could you possibly recommend another counselor?  “Not that’s accepting new patients right now, but if I think of anyone, I have your number, and I will text you.”  Seriously?  Ya, why don’t you just do that.  TEXT me.  Bitch.  Oh, and by the way, you are like the WORST grief counselor I have never met with before.  “You look so great!  You would never know you just had a baby three months ago.  You are SO lucky.”  Shut up, innocent mom at daycare.  Yes, I am so lucky I carry my stress in my stomach and shit my brains out at least twice a day. Oh, no.  Oh, no.  Not this song.  Run.  FF.  Damn you, shuffle.  Too late.  Now it’s stuck.  There’s an emptiness inside her, and she’d do anything to fill it in.  “Y’all need to find a church, Sheila Kaye.”  “Keep writing.  You’ve really tapped into something here.”  Play “I Will Wait.”  “Ok, playing ‘I Will Wait.’”  You like that song, Bear?  Tick-tock, tick-tock, tick-tock.  “Are you not working anymore?  That’s so great!  One of my friends did that.  She went back to work after having a baby, and it turned out to be too soon, so then she took some more time off.  How great is that!?”  Do not punch the innocent mom at daycare in the face.  Crosby will never get in if you start punching other moms in the face.   “I know now really isn’t the time for you to be shopping around churches to join.”  Did I take my vitamin today?  Gosh, I just can’t remember.  Why can’t I remember if I swallowed that big pill or not?  I guess it won’t hurt if I take two.  But three might be bad.  Ok, I’ll just take one more.  “Just insert the needle into his abdomen anywhere between 45 and 90.”  45 and 90.  Got it.  How long am I going to have to give him shots?  “Indefinitely.”  You smell so good, Crosby.  Oh, look at that smile!  You are my happy baby girl.  Cros, you and Joe Bear make me a happy Momma.  “Mrs. Kennett, you will need to wear these compression tights for seven days following surgery, but you only have to sleep in them the first night.”  Ok.  Maybe I should snap on a garter belt and pretend like they are sexy.  “My eye is starting to hurt again.  Have you heard back from Dr. B.?  Will you please e-mail her again?”  Somebody please help my husband.  You know she wishes it were different.  She prays to God most every night.  And though she’s quite sure He doesn’t listen.  There’s a tiny hope in her He might.  I’m sorry if this hurts you.  I don’t really like having to do this to you.  It makes me sad.  “There is a clinical trial at Fox Chase in Philadelphia for Crizotinib resistant patients.  Let’s try to get you enrolled in that trial as quickly as possible.  I would like to keep traditional chemo in our back pocket for the time being.”  Do you have other ALK patients on this trial?  “No.”  Are you hopeful this will work?  “Oh, we hope this drug leaves Crizotinib in the dust.  We are trying to get this drug approved.”  Oh, thank God.  Thank.  You.  Jesus.  Something ’bout you and me and the birds and the bees and Lawd have Mercy, it’s a beautiful thing.  Mom, I know I am calling late, but can you and Daddy go ahead and come on up?  We need to be in Philly on Tuesday.  “We’ll be there by Monday night.”  Love, love, love.  I just made dinner reservations for us at Morimoto.  It’s his flagship restaurant.  Are you ok?  “It’s been three weeks tonight, I am feeling worse, and I just need to get started on this trial.”  I know you do, baby. I know.  And we are getting started on that this week.  We’ve got this.

What We Can Handle

7 Mar

bad-ass

 

 

(Found on the Momastery blog)

Our “Babies”

6 Mar

babies