Archive | February, 2014

Get On Board (A Reblog From The Conley Chronicles)

7 Feb

Remember the Conleys from my previous post, How to Train a Train? I wanted to share Brooke’s latest blog post: Get On Board (via The Conley Chronicles):

Today was a lot like any other day.

I was pushing Reid down the hall at St. Jude. He was peeking out from under his little mask. I was peeking out from under my baseball cap (the horrors that lie beneath).

I’ve made a habit of trying to acknowledge other parents. I give them a nod or a smile.

This morning, I walked past a new mom. She was scared and sad and in shock. She had her arms wrapped around the new patient binder and tears in her eyes. Her little girl was with her — seemingly healthy with a head full of hair that has yet to fall out.

I gave her a knowing smile, but she didn’t see me. She probably won’t notice little things like that for a while.

But, I noticed her. And I empathized with her. Just a few short months ago, I was her. Awash in a fog of disbelief and resistance and grief. Full of despair and sadness and helplessness.

Crying in the hallway.

I wanted to reach out, but she was gone. So I cried for her instead. I kissed my baby for her. I sent her a prayer. I silently told her that it would all be ok.

I haven’t written in a long time, because it’s taken me awhile to figure out this new chapter in my life. I’ve been hard at work trying to slow down the freight train that was speeding out of control.


About 15 minutes ago, I wrote the words that you just read. I had just finished typing the part about the freight train and I was pondering how to put even a fraction of my thoughts onto paper. How to verbalize the shift that happens when you let go of control and let life take you where you’re meant to go.

And right then, I got a text from my best friend, Monica:

Her: Did you see Sheila’s post?

Me: I didn’t, but I’ve been talking to Chip almost everyday. What’d it say?

Her: It talks about y’all!

Me: It does?

It does!

Sheila and Chip are friends from our DC days. I met Chip the first week I arrived on The Hill. We hit it off over several hundred Bud Lights and we’ve been tight ever since.They’re good people. We have a lot in common.

Chip and Patrick speak Red Sox. Sheila and I speak our minds.

Chip is a Yankee. Sheila is a Southern Belle.

They have a little boy that is Elle’s age and a little girl that is Reid’s age.

They’re in The Club.

Distinguished members of a club that no one wants to join.In fact, they pretty much run the thing. President and vice president, respectively. No election necessary.

Chip is fighting the battle of his life against Stage IV lung cancer. And he’s doing one helluva job.Sheila is his facilitator and biggest supporter. She writes about their journey on her blog, Team Kennett.

Her latest post was about us. About how hard it was for us to come to terms with this horrible thing called Cancer.

Chip was one of the first people I told when Reid was diagnosed. I wanted him to know he had a partner in crime.

They came to visit about two weeks after we got to Memphis — I was still in that perma-blur like the woman I saw today.

I remember laying our hearts out on the table. I remember talking about how the proverbial train had left the station without me.

She speaks to that moment better than I ever could. When I read her words tonight, it was almost like I was reading about someone else’s life.Except that I wasn’t.

I thought about what a sad chapter that is in our story — the early days here in Memphis when all we wanted was for everything to be the way it was.

It got me thinking about all of our sad chapters. Lord knows we’ve had our fair share.

But, we’ve had wonderful chapters, too. And when you put them all together it makes a pretty amazing book.

Like us, The Kennett’s have one heck of a story. They know all about that line in the sand and understand that the train can go off the track at any second. They know when to hold on and when to let go. They teach us so much. Go read Sheila’s beautiful words and support our friends on their own crazy ride.

Anyway. It’s not a coincidence that I started writing this post today. That I got that text. That Sheila and I touch on the same themes when we write about our lives.

We’re just two mamas. Two wives. Trying to answer the question we get asked the most:

How do you do it?

And the answer is always the same:

You just do.

You stop resisting. You stop resenting.You accept. You surrender.

You help each other along.

You ride the train until you have to transfer to another one. And when you’re told there’s a new route, you get out the map. You adjust. Find your way.

When we first got to Memphis, all I kept thinking was whywhywhywhywhywhywhywhywhwywhy.Why us?

I wanted OFF the train.

I knew a thousand people, and I didn’t know one person whose child had cancer. (Sound familiar? I thought all of the same thoughts with his previous diagnoses.)

Every other mom I knew was minding their own business. Dropping off the kids, picking them up. Making dinner. Worrying over bedtimes and temper tantrums and potty training.

Why couldn’t I be one of them? Why couldn’t we just be a normal family like everyone else?

In a flash, we seemingly had nothing. No home, no clothes, no dog, no family, no friends, no security, no comfort.

No Sleep Number bed. No Breville juicer. No homemade peanut butter cups.

(Sheila got one part wrong — I did bring along my Obagi Skincare line. The important things, people.) 

No beautiful backyard with the five oak trees that I curse every year for dropping 40 tons of shit onto our lawn, but oh man, what I would give to watch Pat rake it all up now.

All we had to our name was fear, sadness, and another pamphlet with another unremarkable title: Your Child and Acute Myeloid Leukemia.

I was a complete train wreck — pun intended.

These days, I’m feeling good.

I’m still exhausted. Sometimes I’m so tired that I feel numb.

But, mostly, I’m the old me.

A lot has changed. I’m sitting comfortably in a king-sized bed with my pug snoring loudly at my feet.

We left St. Jude housing for a larger apartment. There are no visiting hours here. No room checks. No one asking me why I get so many boxes from Amazon. (I mean, do I even need to dignify that question with a response? Because Amazon is The. Best. Thing. Ever. And sometimes you find yourself in a situation where you have to have organic coconut flakes delivered to your house rightthissecond or you will simply just die.)

Some things you have to accept. Some things you have to change.

Unfortunately, we are currently a family divided. For a long while, we were mostly together. Pat was going back and forth and my mom was helping with the kids. But for the past few weeks, Patrick and Elle have been in Shreveport while Reid and I stay in Memphis. Elle has a direct connection to germs at preschool, and we have to do everything in our power to keep Reid healthy. Pat has to work, so he’s there with her. We’ll eventually switch off and bring Elle back and forth. It was a hard decision, but it’s actually working out quite well for right now.

We miss them. And they miss us.

We’ve had family in and out to help. I have a group of girlfriends coming up this weekend to help me drink some wine.

I have only taken one real break. But it was to the beach with Monica, and it was extremely cathartic.

Memphis is becoming more like home. St. Jude is becoming more like family.

Sure, I’d love to be in my real home right now.

But, I’m no longer fighting. I no longer dream of Shreveport every second of every day. (Insert joke here.)

I don’t spend all my time thinking about how to survive until this is over. If all we did was survive this life, then we wouldn’t be living.

Instead, I work a lot at being grateful. I try to let things go. I try to stay focused and present. I read and I think and I do everything in my power to keep Reid healthy. The days are long and sometimes they really suck. But, I FaceTime my babies in Shreveport and we share even the smallest parts of our day. I tell Elle that I miss her more than I ever knew I could miss another person. I blow her 10,000 kisses through the phone. I tell Pat how much I love him. I wait for them to come back to me. We’re making it work the best way we know how.

It’s hard, but it’s the ride we’re currently on. And the route changes everyday. Sometimes every hour.

But I no longer ask why?

Because I know the answer.

Why not?

I am not immune to suffering. To sadness. To veering off track.

No one is. Not even an innocent little baby. It seems unfair, but there are no answers to why.

Why does my son have leukemia?

Why does my wonderful friend, Chip — who introduced me to my husband, by the way — have terminal cancer?

Why couldn’t that mama I saw this morning walk her daughter into a classroom instead of an exam room?

Why can’t we all have 2.5 perfect children and a labrador and a white picket fence?

I used to wonder why I was the only person I knew who had a child with cancer. With Down syndrome. With a heart defect.

But, I don’t wonder that anymore. Because now I know that God gives you what He gives you.

You can accept it as a gift, or throw it all away.

He gave me my sweet girl and my baby boy.

And now I know a ton of people who were given beautiful children just like Reid.

Kids with cancer. Down syndrome. Heart defects.

In fact, here at St. Jude, we’ve gotten to know two other little ones with the trifecta. They’re also both from Louisiana, if that doesn’t blow your mind.

I’ve met people who have children with Cerebral palsy. Treacher Collins syndrome. Cystic Fibrosis. Lymphoma. Brain tumors.

People I would have never otherwise known. People with amazing stories.

When I meet these people and I hear their stories and I see their children, I connect with them deeply. We all know a secret that is hard to put into words. We all cry silent tears at seemingly inappropriate times. We are always thinking of our children when that happens.

We know that life can be hard. It can be heartbreaking. But from heartbreak comes indescribable joy.

Joy so big that sometimes you think it will overwhelm you.

Sometimes instead of asking why, I wonder how it was possible to live so long without knowing all that I now know.

How did I live my whole life before Reid and not know that there are trains everywhere careening off the tracks? Trains that seem lost, but are quite possibly heading exactly where they need to go?

I didn’t know before. But I know now.

Before Reid, I’d never met a person with a true disability. Never had first-hand experience with cancer.

I couldn’t fathom that my child would end up even in the NICU. And that seeing him there would literally break me into a million pieces.

Never thought I would have to give him over to a surgeon for heart repair, all the while feeling as though my heart was being ripped in two.

It never once occurred to me that I would have to see him sick again. This time with leukemia. That I would watch him suffer through chemotherapy. And that doing so would leave a hole so big, that at first I wouldn’t begin to know how I would survive it all. But that, eventually I would start to fill it piece by piece with faith, love, understanding, patience and acceptance.

I realized that having a child is not about Perfect Pregnancy! Perfect Delivery! Perfect Baby! Perfect Family! Perfect Pictures!

I wish that were the case for everyone and I’m grateful that it is for so many people.

But, for many of us, that’s not reality. We don’t get to abide by the the fallacy that everyone else clings to — as long as he’s healthy! 

Because, what if your child isn’t healthy? What if s/he is one of the hundreds of children born everyday with a birth defect or genetic disorder or degenerative disease or neurodevelopmental delays? Or one of the millions more that will receive a diagnosis later in life?

Did I ever truly believe that an unhealthy child means less or isn’t as much of a gift as a one that is healthy?

Before Reid, I didn’t think about the millions of parents who spend each night praying for their children to be well. The ones who pray for just one more day.

Every morning some parent, somewhere, hands their baby over for chemotherapy or open-heart surgery or a bone marrow transplant or brain tumor removal or cranio-facial restructuring. And when they do, they wonder deep-down inside if that’s the last time they’ll ever see their child alive.

I never once thought about all the parents who spend months and years of their lives at hospitals — doing whatever they have to do to get their child well. The ones who hold their children tight through daily blood draws and painful procedures and the horrible side effects of medicine.

I certainly never knew that I would be one of them.

Before Reid, I never knew what it felt like to sit in a room and get bad news.

I had no idea that it was possible to live your life in a hospital room, trying to delicately balance the care of your family, even though you rarely have your entire family in the same state.

I didn’t know that I would worry just as much, if not more, about the well-being of my little girl. She may be healthy, but her needs are just as important.

I didn’t know that I would stress so much about Reid’s development and cognition and spend enormous amounts of time making sure he doesn’t get behind. Whatever behind means at this point.

And oh Lord. I really didn’t know that I would collect his hair strand by strand as it fell out from chemo.

And save it in a ziplock bag because I can’t bear to throw it away.

That I would perfect the way I hold his head while he’s anesthetized — holding it just right, so that it doesn’t fall backward when the drugs finally kick in.

That I could sing The Itsy Bitsy Spider for hours on end, if it means keeping him calm enough to be poked and prodded “just one more time today.”

I didn’t know that I could survive for months on no sleep, crappy cafeteria BLTs and adrenaline.

That I could spend so many nights in a hospital room that I would one day lose count.

I didn’t know that I could get up every morning and smile and laugh and have a thousand conversations with a thousand different doctors and actually have the wherewithal to comprehend what they are all saying. (Thank you, Starbucks.)

I didn’t know that I could do it.

But I can. And I am.

Every day, every hour, someone gets bad news.

Way worse news than we’ve ever gotten. And it’s not just cancer.

People go through so much in this thing called life.

Unfortunately, lots of people get run over.

But the ones who are along for the ride always end up right where they need to be. Even if they don’t know where they’re heading.

We’re on board for wherever life may take us. And in the meantime, we’ll try to love harder and forgive faster. To laugh quicker and live slower. We’ll enjoy all the things we took for granted before. The house and the dog and the family and the friends. The hairstylist.

We’ll pray for all of the people that can’t go home. For all the mamas who rock their babies to sleep each night in a hospital room.

And for all the sick daddies who teach their children by example. Who so expertly maneuver this ride called Life.

We’ll reach out. We’ll help them through.

And then. The four of us will make it home. We’ll sit under those big oak trees and reflect on our story while we wait for the next train to come.

(Only this time it better be the freaking Orient Express…)


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, 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.


– Sheila