How To Train A Train

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

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

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