Archive | Photos RSS feed for this section

No Rest. Fly! 2016

17 Jan
greenbrier

“No rest. Fly!” That is what Crosby, in all of her newly turned two year old wisdom, instructed us to do last year on the morning Chip went to heaven, so this weekend, Clete, the kids and I decided to head to the mountains of West Virginia to find joy and experience happiness, just as Chip had instructed us to do. We’ve bowled, ice skated, eaten ice cream, swum, watched the Pats win, played in the arcade, stayed up past our bedtime, cackle laughed, and even had a dance off to our favorite One Direction songs. (Joe won and Crosby received honorable mention.)

Joe asked me the other day why Daddy hadn’t sent us any snow yet this winter. This morning we woke up to the most beautiful and gently falling snow. I told Joe he must have been waiting until today to send us a little extra love. Received and right back at’cha, Chip Kennett, forever and ever.

We’ve got this.

 

Advertisements

Day in the Life

1 Feb

Back in May 2014, the lovely and talented photographer Jennifer Hughes had taken some family photos for us. A few days later, she emailed me with the offer to come back to spend another day with our family – not to take formal pictures, but to document our real life instead. She wanted to be a fly on the wall and capture our day from start to finish.

Chip and I loved the idea, but I was a little bit like Reese Witherspoon in Wild. I mean, I was just supposed to roll out of bed circa 6:45/7:00 a.m. to unlock the front door for her while she patiently waited downstairs for the kids to stir and I didn’t need to coordinate, but not match, our clothes for the day?

Jennifer spent that fly-on-the-wall day with us in June, and how grateful we are to have these photos of our family. She has been kind enough to post them to her website. Thank you, Jennifer!

http://jenniferhughes.com/We-ve-Got-This

(If you’re viewing on a computer, use the bottom scrollbar.)

photo by jennifer hughes

photo by jennifer hughes

Miles Back Home

22 Jan

A beautifully written and stunningly heartfelt tribute to Chip, from dear friend Brooke (with some pretty awesome pictures!) that we wanted to share this morning: Miles Back Home

This post is to be treasured.

From Brooke’s blog, The Conley Chronicles:

Just keep posting pictures of that boy. 

I couldn’t have guessed that such a simple text would in hindsight mean so much.

We had been talking all week while he lay in a hospital bed. He sent me a breathing tube selfie and I ribbed back, “Try to get some sleep with that thing on your face.” 

It was our normal banter and I never wanted to believe it would end. We laughed and we joked. We occasionally took the serious route.

Can I do anything from here?

Just keep posting pictures of that boy.

And then it was over.

Perhaps I did know that these seemingly basic interludes would one day take on greater meaning. Somewhere deep down I must have, because for the past two years I have been unwittingly creating a virtual memory vault filled with texts, photos, and voicemails that I could never bring myself to erase.

Bayard Winslow Kennett II – aka Chip (Chippewa as I liked to call him) – was one of the greatest people I have ever known. I met him at the ripe old age of 22, back when we both lived in Washington, DC and worked in the same congressional building on Capitol Hill. Every week day was spent IMing back and forth about the best bars in town and every weekend was spent exploring them.

I’ve written about Chip and his beautiful wife, Sheila, before in my post Get on Board. Team Kennett – as their family of four has come to be known – have been an inspiration to so many as they focused on being present and grateful after Chip’s 2012 diagnosis of Stage IV lung cancer.

The above words were our last correspondence just hours before he passed away.

Continue reading on The Conley Chronicles: Miles Back Home
Screen Shot 2015-01-22 at 7.48.27 AM

brooke and chip

(You might remember that we wrote about the Conleys back in February 2014, in the post How to Train a Train.)
2c51a-img952153

miles with chip

How To Train A Train

2 Feb

While visiting my family in Mississippi over Thanksgiving, Chip and I went to Memphis for the day to visit some of our friends, Brooke and Pat Conley, whose son, Reid, had recently, and quite abruptly, started receiving treatment at St. Jude Children’s Research Hospital for Acute Myeloid Leukemia, an extremely rare form of cancer with only 500 diagnoses each year.  Pat, who hails from Bath, Maine, and Chip attended Colby College together, and Brooke was one of the first people Chip met when he moved to D.C.  I am sure I am getting some of these details wrong, but Chip initially met Brooke one day after work at a Senate Softball League game on the National Mall.  Chip and Brooke instantly became running (and by running I do mean drinking) buddies, and in due time, Chip had introduced Brooke and Pat to one another, they fell in love and got married and two kids later, they are living happily ever after in Brooke’s hometown of Shreveport, LA.  Well, sort of…

Reid and Chip

Reid and Chip

Brooke can obviously tell their story better than I, and I strongly encourage you to visit Brooke’s blog at http://www.theconleychronicles.com/2013/03/the-story-of-us.html, but at week 22 of Brooke’s pregnancy, during a routine sonogram, Brooke and Pat learned Reid had AV Canal, a congenital heart defect, and two long weeks later, learned the heart defect was linked directly to Reid also being Down syndrome.  Brooke was only two months further along in her pregnancy with Reid than I was with Crosby, so the news shook me to my core.  I can so clearly remember reading the e-mail she sent out telling her friends and family the news about Reid and being simply floored.  Floored by the news.  Floored something like that could happen to people we knew.  Floored at the reality that birth defects did not discriminate and could happen to “normal” people, the pretty people, the educated people, the happily married people.  And finally, floored by Brooke’s candor and grit.  She kept referring to being a Down syndrome Mom as a gift.  A gift.  Who WAS she?  I prayed I never had to deal with anything like that in my own life, but if I did, I sure hoped I could take it all in stride and be as strong and courageous as Brooke.

In October of this past year, Brooke came to D.C. for a weekend away to visit with friends.  She and Chip had lunch one day, and they had a conversation about that proverbial “line in the sand.”  That defining moment that forever changes the course of your life.

A couple of hours before Joe’s 4th birthday party on November 9th, Chip received a text from Brooke saying, “Remember that ‘line in the sand’ we talked about?  Reid was diagnosed with leukemia yesterday.  I am in the car with my Dad, and Pat is riding in the ambulance with Reid, and we’re on our way to St. Jude.  You’ve got a little buddy fighting with you now.”  Chip’s brother was in town visiting that weekend, so Chip and I huddled in our bedroom behind closed doors for a minute and cried and prayed for them.

WTF?  Hadn’t God already handed them a shit sandwich?  Now this amazing, little 13-month-old boy had leukemia on top of everything else?  Seriously??  I mean, COME ON.  But just like birth defects, cancer does not discriminate against “normal” people, the pretty people, the educated people, or the happily married people.  As if the day of Joe’s birthday party wasn’t already a hugely emotional day for us, Chip and I managed to pull ourselves together and felt even more grateful for our happy, healthy son that day.

Joe at his birthday party

Joe at his birthday party

Before visiting with the Conleys that day in Memphis, Chip and I stopped at the Rendezvous to pick up a sausage plate, dry ribs, pulled pork and sides for us to have for lunch.  Of all people, you would think we would know what to do and say to someone going through something like this, but we didn’t.  I was nervous as hell sitting in the lobby of the Target House that day waiting on them to come down and was clutching on to this chess pie Lady Linda had made for them, like it was my security blanket.  Sitting there, I remember feeling kind of stupid–like that stupid pie or dry rub was going to make any of this awful situation any better.  Before we knew it, the Conleys were all standing there before us, freshly showered, immaculately dressed and with big smiles spread across their faces.  Brooke’s makeup had been perfectly applied and she was rocking these skinny jeans and wedge, suede high-tops with her big, ol’ Louis Vuitton bag, filled with diapers and organic squeeze packs of food obvi, casually thrown over her shoulder while pushing little Reid, who was rather patiently wearing a paper face mask, underneath the plastic cover of his jog stroller.  Yet despite all of that, I remember thinking Brooke looked sad.  I suddenly understood what that “Southern look” Dr. D had referenced when looking at me one day was, because Brooke definitely had that Southern look about her.

Within minutes, all of the awkwardness had dissipated, and the four of us spent hours having the most candid and refreshing conversation about our lives.  Not that I ever had much of a filter to begin with, but cancer sure stripped the little bit I did have away, so we all just dove right in to the details, because we all knew how to “talk” cancer.  We were able to say things to each other without having to carefully choose our words or sugarcoat anything.   We said things to each other that would bring anybody other than our therapists to their knees.  We discussed how cancer could affect your marriage, your ability to parent, your friendships, side-line your careers and in their case, in a flash, relocate you to an entirely new city.

Brooke took Reid to the pediatrician one day, was sent directly to their local hospital for an overnight stay and was transported to St. Jude the very next day.  Brooke left her home, her dog, her three-year-old daughter, Elle, her sleep number bed, her Obagi skincare regimen, her bath robe, her life, on November 8th, 2013, and hasn’t returned home since.  With the help of family and friends, many of those things have now found their way to the Target House, including their precious Elle, but their overnight transition remains quite jarring.

We also talked a lot about trains that day.  One of the things Brooke kept saying to me was, “I want my old life back.  I just want to go back to my house and our old life.”  After listening to her, knowing we are cut from a similar cloth, I told her I used to be the same way, but I had quickly learned that wasn’t happening. Turning back time just isn’t an option, so you just have to get on board the train, because if you don’t, that train will knock you down.

Brooke asked me how long it took me to get on board, and I’m not quite sure, but at some point I just realized as much as I didn’t want for Chip to have cancer, to the degree that he did and to be diagnosed when he was, I couldn’t do a damn thing to stop it.  No matter how hard I prayed, no matter how determined I was to fight it, and no matter how strong my will was, I could not stop the cancer train from barreling toward me.  So, in order to prevent that from happening, I just had to figure out a way, albeit begrudgingly at first, to crawl on board.  I may not like the ride we are on, but I would rather be on the ride than to be run over by it.

Joe received a book from my sister titled, “How to Train a Train” for his birthday.  It’s a great little read and instructional guide about how to choose the perfect train for you, what to feed it, how to pet it, how to take care of it once home, and how to train your train to wipe its feet off before coming inside and to do tricks.  Cancer is much like that.  With our doctors and nutritionist, we have learned how to feed it, how to fine-tune the dosage of medicine his body likes and responds positively to, and how to manage the physical and emotional side effects of cancer.  Neither of us are perfect at it, but in keeping with our mantra of “living with cancer,” we had to adjust and instead of resisting it, we had to tweak our mindsets to figure out the best way for us to live with it.

Isn’t much of life that way?  Maybe you can’t control your circumstances, but you can control your response to your circumstances, so we actively work at maintaining a positive response to our circumstances every single day.

And sometimes, the train you are on has to switch tracks.  I can barely keep up with everything that has happened since Chip started this trial, because every single week there has been something new to worry about–elevated liver enzyme levels, swollen kidney, elevated pancreas levels, severe stomach cramps, new mets on the brain, repeat pleural effusions, local labs and chest X-rays, two dosage reductions of his oral chemo, being prepped to have a catheter installed so I could drain his right lung at home to right before the IV went in, the procedure being called off, because the surgeon didn’t think he had enough fluid in his lungs that day to warrant a catheter–which have all led us to a new course of treatment.

Because of the five lung taps performed since Thanksgiving, we knew the efficacy of the trial drug was playing off, so along with our trial oncologist at Fox Chase Cancer Center in Philadelphia and our primary oncologist at Johns Hopkins, we all started exploring different drug trial options, immunotherapy trials, traditional intravenous chemotherapy, etc., seeking the next best course of action for Chip.  Over the course of a week, Chip and I explored multiple treatments and consulted with other ALK+ patients, a brilliant oncologist at Mass General, and connected with the LUNGevity Foundation and the Lung Cancer Alliance.  After sitting through consultations and repeated phone calls where words like “heat shock protein 90,” chemo cocktails of Alimta and Carboplatin, trials titled LDK 378 plus weekly AUY922 infusions were casually thrown around, I thought to myself, “Now, I’ve gone off and gotten myself on the wrong train, because I have NO idea what these people are talking about,” but I quickly caught on and learned what I needed to.

Last Thursday, after we had all done our homework, we reconvened in Philadelphia to choose our next course of treatment.  We had narrowed it down to two different options–another Novartis trial being administered at Fox Chase under the same oncologist or intravenous chemotherapy back at Johns Hopkins–when the results of the CT scan performed earlier that morning came in. They revealed the disease had progressed significantly enough that our oncologists quickly agreed we needed to move directly to intravenous chemotherapy, because we didn’t have time to experiment with another trial.  We just needed to boldly attack the cancer and hopefully get the fires in Chip’s body contained once again.  Within a matter of 20-30 minutes, we had gathered up copies of our latest scans, patient history, they popped him with a B12 shot, received a handful of pre and post chemo prescriptions, and exchanged tearful goodbyes with all our oncology team.  As much as we dreaded our trips to Philadelphia a couple of times a month, we had also grown quite close to our entire team who each played a role in helping keep Chip alive.

 

 

Monday, January 27th marked a new day for us as we started down a different set of train tracks.  Fighting back again was exciting but also scary and intimidating to learn an entirely new language, new platelet and red and white blood cell count numbers to memorize, set of drugs and their potential side effects, dosing regimen and protocol, our way around the hospital and what our routine will be each time we are there, and to get to know our new oncology team.  As of now, Chip will receive intravenous chemotherapy every 21 days at Johns Hopkins, but we still don’t know how often he will have scans, have consultations with our oncologist, etc., because their main priority was simply getting us started but in due time, I know we will learn how to re-train our train.

chemo

– Sheila

Making Lemonade

15 Dec

Christmas cards are kind of our thang as one of my friends recently put it, so when folks said there was no way we could possibly top last year’s card, Chip and I gladly accepted that challenge.  This past Christmas, we already had our card all figured out by mid-summer, so when we returned from our trip to California in August without any ideas, I was starting to panic.

A few weeks later in September, Chip and I spent the weekend in New Hampshire for work. While on a hike at Arethusa Falls that Saturday, out of the blue, Chip said, “We need to do something with lemons.  Like a lemonade stand or something with a really subtle message.”  I liked it.  We couldn’t exactly ignore the events of the past year either, but at the same time, our sob story gets really old really quickly, most especially to ourselves, so neither of us wanted to play (or print and send) the overt “cancer card” this year. Alas, we had a starting point.  Inspiration.  We discussed the lemon concept a little more and finally Chip said he had gotten us started but for me to take over from there and add my artistic approach to the lemon theme.  I knew I could work with this and make it a little fun and a little serious all at the same time.

I liked the idea of the lemonade stand, but I couldn’t figure out how to photograph all four of us behind a table and it to look visually appealing.  One of us really needed to be standing up holding Crosby in order for her to be seen and because we were going to be shooting in the winter, it was going to be hard to take that shot outside in the cold on dead grass and get the kids to cooperate.  It didn’t make sense to have a lemonade stand set up inside of the house.  So, the lemonade stand was nixed.

While foraging through the junk drawer in the kitchen for something one day, I stumbled upon my favorite magnet about scotch. We haven’t used it in awhile as we now have a stainless refrigerator.  Then, I started digging through the drawer finding all the other magnets like it.  That was it.  A 50’s themed, witty card with a nod to cancer that would accurately capture our response to it.  BOOM!

magnets

I then did a little prop shopping at Target, we recruited our friends Andrea and Adam to come over and shoot our photos one Sunday afternoon, I enlisted the talented folks at Xanthus Design to design and print our card, and voila!

card-front

card-back

Huge, huge thanks to Michael, Hud and the rest of the talented team at Xanthus Design: http://www.xanthusdesign.com

– Sheila

I’m a Survivor (What?)

19 Nov

Did you know November is national lung cancer awareness month?  Hell, we HAVE lung cancer and didn’t even know that until a couple of weeks ago when Chip randomly found out about a lung cancer walk here in D.C. called Breathe Deep DC via a tweet from local weather man Doug Kammerer.  Breathe Deep DC, sponsored by the LUNGevity Foundation, is a 5K on the National Mall to raise money for lung cancer research.  It is only in its third year and quite unlike the Susan G. Komen Global Race for the Cure or Avon Walk for Breast Cancer, other than that one tweet, neither of us heard anything else about the event before or after in the news, on the radio, saw registration posters, etc. which is quite disheartening considering lung cancer is the deadliest cancer, responsible for more than 25 percent of all cancer deaths.

Well, needless to say, the more we learned about Jerry Sorkin, the local man who started the walk in D.C., Chip decided he really wanted to participate in it, but unfortunately, since we had only found out about the walk a couple of days before it occurred, we didn’t have time to prepare for it, form a Team Kennett team or get a babysitter for 8 AM that Sunday morning.  I really, really didn’t want Chip to do the walk all by himself, but he really, really didn’t want to bring the kids with us, because he knew it would cause Joe to ask 100 questions neither of us were prepared to answer, so once I discovered he was in really good spirits on the morning of, I finally relented and decided to just let him go do it while the kids and I went to church together.

When Chip arrived, he noticed the majority of the folks were wearing blue “supporter” t-shirts while a much smaller minority were wearing green “survivor” t-shirts.  Was Chip a survivor?  What does being a survivor even mean?  Do you have to be in remission to be a survivor?  Since there is no cure for lung cancer, did Chip’s presence alone make him a survivor?  Do the standards of being a survivor change according to the type of cancer you have?  Am I survivor, too?  Are we both survivors for somehow managing to keep our heads above water this year and live life as fully and normally as possible?  Well, yes.  After standing around for awhile, Chip decided he was indeed a survivor.  As he put the green survivor t-shirt on, he noticed heads slowly starting to turn in his direction.  Another survivor turned to him, shook her head and said, “But YOU are so young.”  Yes, ma’am.  He sure as shit is.

Breathe Deep DC, Sunday, November 3, 2013

Breathe Deep DC, Sunday, November 3, 2013

Chip regretted he never got to meet Jerry Sorkin that day to thank him for all he is doing to promote lung cancer awareness and funding in our city, but he did get to meet and thank Doug Kammerer for his tweet and involvement in the race.  He also met another young man from Baltimore, father of one and a patient of Dr. B’s at Johns Hopkins, who was there with a group of his friends, he related to quite easily.

I am still conflicted Chip walked that walk alone that day, because “alone” is not how he has had to walk along this larger journey we are on, but I am extremely proud of him for being healthy, willing, and strong enough to do it.

And in the spirit of doing our part to promote awareness for lung cancer and the need for further research, I wanted to share this article, which I strongly urge you to read, along with a few facts I pulled together from various sites.

http://www.huffingtonpost.com/dr-lecia-v-sequist/anyone-who-breathes-air-c_b_4234424.html

  • Lung cancer kills roughly twice as many women as breast cancer, and almost three times as many men as prostate cancer.
  • Although lung cancer kills more Americans than any other cancer, it receives less government funding for research than other cancers.
  • The median age for a lung-cancer diagnosis is 70, and smoking causes about 85 percent of all lung cancers in the U.S.
  • Nonsmokers make up about 10 to 20 percent of all cases, and some studies suggest that those rates–especially among women–may be going up.
  • CT scans can screen for lung cancer before there are any symptoms of the disease, but to qualify you must be between ages 55 and 74 and be a current or former smoker.
mudder

Team Kennett Tough Mudder Team

Chip and I want to recognize and thank members of Raytheon’s Government Relations office for forming a Team Kennett Tough Mudder Team and raising over $5,000 for the American Lung Association.  What an inspiration y’all remain to Chip in the office and in the mud! 

– Sheila

Happy Birthday, Joe!

13 Nov

Joe recently celebrated his birthday. (Do you think he had a good time?)

joe-birthday-2

excited to take birthday cupcakes to school #lightningmcqueen

joe-birthday

all smiles!