Prevent Cancer Foundation Webcast

16 Jul

In response to his recent Congressional testimony, Chip has been asked by the Prevent Cancer Foundation to participate in a webcast to discuss funding cancer research. View it live tomorrow at preventcancerwebcast.org; details below. (For those who are interested and can’t watch live, the webcast will be available after the event in the group’s archive at the same link.)

webcast_savethedate3

Tuesday’s Briefing and Wednesday’s Hearing

7 May

On Sunday afternoon, I received an e-mail from Jeff Allen, the Executive Director of Friends of Cancer Research, the organization that hosted the Breakthrough Therapies Designation Briefing held in the Senate today, asking if Chip or I would be interested in serving on the panel to discuss our personal experience on LDK 378, now known as Zykadia, since this drug was designated as a breakthrough therapy drug by the FDA last week. I was happy to do it if being on tap for two days in a row was going to be too much for him, but Chip didn’t hesitate for a second. He happily agreed to serve on the panel. As a panelist, Chip testified about his participation in the trial and what it meant to him and our family to have had a solid 7 1/2 month stretch of “health” and normal living.

briefing

Prior to today’s briefing, the panelists and moderator had an opportunity to meet with Senator Bennet (D-CO) who, along with Senator Hatch (R-UT) and Senator Burr (R-NC), introduced the “Advancing Breakthrough Therapies for Patients Act” in the Senate last spring.

What does Breakthrough Therapy Designation mean? In total laymen’s terms, after animal testing is done, drugs go through three different phases:

  • Phase 1–A small group of qualifying candidates (the criteria and protocol for each clinical trial is unique) receive the drug to determine proper dosage levels, how long it takes your body to metabolize the drug and any side effects are recorded. The number of subjects typically ranges from 20 to 80.
  • Phase 2–Barring unacceptable toxicity levels and once the proper dosage is determined, the drug then moves into the expansion phase. Chip entered the LDK378 trial in Phase 2. The pharmaceutical company wants to get the drug to as many qualifying candidates as possible to determine if the drug is indeed effective in treating the targeted disease, and any short-term side effects are further documented. Only a couple of hospitals or cancer centers will execute a particular clinical trial at any given time, hence patients quite often having to travel for treatment, because there are thousands of clinical trials for all diseases being conducted across the nation at once, so not all hospitals can conduct all trials. Typically, the number of subjects in Phase 2 studies ranges from a few dozen to about 300. If there is substantial evidence the drug is having an effect on the disease, and more specifically over other comparable or existing treatments, the drug moves ahead to Phase 3.
  • Phase 3–More information is gathered regarding the safety and effectiveness of the drug, they study different populations and dosages and study the drug in combination with other drugs. The number of subjects usually ranges from several hundred to about 3,000 people.

Breakthrough Therapies allows a drug, if designated by the FDA, to skip Phase 3 and move directly to the market, so now every ALK+ patient across the U.S. has access to this drug. Both of us being from small, rural towns, it has never been lost on either Chip or me how fortunate we are to now live where we do and to have access to such great medical centers like Johns Hopkins in Baltimore and Fox Chase Cancer Center in Philadelphia that are conducting these clinical trials.

View the Breakthrough Facts Handout for more information.

The FDA approved LDK378 to “break through” to the market by skipping Phase 3, because unfortunately, those with non-small cell lung cancer who are ALK+, are being treated for longevity and quality of life, so they just need this drug. They aren’t worried about potential long-term side effects of the drug or how it interacts with Lipitor, for example. Or in some instances, it may be a drug treating an older population or children that can’t withstand the side effects of traditional chemo, aren’t of child-bearing age, etc., so there is no need for a drug that has proven to be effective in treating their type of disease, to go through all of this additional testing. To think that a potential ALK+ NSCLC patient from Marks, MS, or Conway, NH, could now receive this drug in part to the clinical trial Chip was one of 164 to participate in is really amazing.

It truly meant much to both of us to be able to say thank you to so many in the Senate, the FDA, healthcare providers, pharmaceutical companies and various cancer organizations today for all of the work they have been doing that we are directly benefiting from; likewise, I think it was equally as rewarding for them to attach a name and face to a real person who is a husband and father just trying to live a quality-filled life. We repeatedly heard the message today that they were doing it all for us. For real people like US. Wow.

Tomorrow’s hearing in the Senate Special Committee on Aging regarding The Fight Against Cancer: Challenges, Progress, and Promise in which Chip is testifying, begins at 2:15 PM EST and will be streamed live from the Committee’s website. Riveting television, I know, but many of you have asked how to watch, so if you are indeed interested, click on http://www.aging.senate.gov/hearings/the-fight-against-cancer-challenges-progress-and-promise for your viewing pleasure. The Committee typically leaves a recording of their hearings up on their website, too, so you can watch it later, as well. It is recommended you use Chrome or Firefox as your browser instead of Internet Explorer.

Wish us luck!

– Sheila

 

And this is also happening…

2 May

hopeThe LUNGevity Foundation is hosting their annual HOPE Summit in Arlington this weekend (see more on the LUNGevity website), so Chip and I are going to do a sophisticated dance, i.e., juggle with the kids and various commitments this weekend so Chip can attend as much of this as possible. Please don’t judge me if I place Crosby on one of those child leashes you see on kids at Tysons I, not II obviously, at tee ball in the morning, because Crosby is convinced she is a four-year-old little boy who has every much of a right to the field as her big brother.

Sunday, May 4, 2014
10:15-11:00am
Immunology 101 and Clinical Trials

On Sunday morning, our oncologist at The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Dr. Julie Brahmer, is presenting on the immunotherapy trial Chip is currently enrolled in, so he is specifically looking forward to learning more about that and other advances being made in lung cancer research.

A big, big thanks to Andrea Ferris, President and Chairman of LUNGevity, for her vision, her determination and all of the support she has provided to Chip over the last six months.

– Sheila

So…THIS is happening!

1 May

… and was officially just noticed in the Senate:

SENATE SPECIAL COMMITTEE ON AGING

Bill Nelson, Chairman
Susan M. Collins, Ranking Member

WITNESS LIST

The Fight Against Cancer: Challenges, Progress, and Promise

May 7, 2014

2:15 PM

Dirksen Room 562

  • Harold E. Varmus, MD, Director, National Cancer Institute, National Institutes of Health
  • Valerie Harper, Actress and Cancer Survivor
  • Thomas Sellers, PhD, MPH, Director, H. Lee Moffitt Cancer Center and Research Institute
  • Mary Dempsey, Assistant Director and Co-Founder, The Patrick Dempsey Center for Cancer Hope and Healing
  • Chip Kennett, Advocate and Cancer Survivor

Most cancer diagnoses occur in those aged 65 and older, and this portion of the population is rapidly growing. In addition, because of advances in research, a huge number of diagnosed individuals now “live with cancer.” New treatments for diseases that were once fatal means someone diagnosed at a young age, for instance, now will “age” with cancer, either living with cancer for a period of many years or fighting cancer and surviving earlier in life and aging with the impact of those treatments. Still another subset of those are fighting cancers that are still as-yet incurable and rely on the absolute latest of clinical trials to prolong their lives until a cure can be found. Clearly, both the advances and the demographics of those with cancer has changed since even the last Senate hearing on cancer six years ago.

This hearing will highlight each one of these factors and why innovations in cancer research are so important to confronting this trend, while also illustrating the progress that has been made against cancer because of the dedicated work of researchers, clinicians, patients, and advocates. In addition to stressing the importance of federal funding through the National Institutes of Health and the National Cancer Institute, witnesses will also cover the specific areas of treatment and survivorship.

Witnesses:

1) Dr. Harold Varmus, Director, The National Cancer Institute (NCI). Dr. Varmus will provide an update on the Federal government’s work to get the latest advances to patients.

2) Thomas A. Sellers, PhD, MPH: Executive Vice-President and Director, Moffitt Comprehensive Cancer Center, Tampa, FL. Dr. Sellers will present research progress and challenges from the ground.

3) Mary Dempsey, Director, The Patrick Dempsey Cancer Center for Hope and Healing in Lewiston, Maine. Ms. Dempsey will talk about the services and supports needed today by cancer patients outside of medical treatment including help with finances, caregiver support, emotional and nutrition counseling, etc…and the trends she sees most often today from her vantage point and where we could improve.

4) Valerie Harper, a celebrity and survivor with Leptomeningeal carcinomatosis (LC), a rare complication of cancer in the brain. Ms. Harper has survived nearly a year after her prognosis.

5) Bayard W. Kennett (Chip). Chip is an advocate, survivor and former Collins/Congressional staffer battling Stage IV terminal ALK+ non-small cell lung cancer. Chip will speak about his diagnosis and living with an extremely recalcitrant form of an already difficult to treat stage IV lung cancer.


Gulp!! I mean, Chip and I actually know better than to agree to do something like this, but when one of our good friends and former colleague of mine, Rachel Pryor, shot me an e-mail about a month ago wanting to know if she could pick my brain on a hearing she wanted to do in the Committee, I enthusiastically said yes. She and I met for coffee at Peregrine (my new fave!!) one morning and spent a solid three hours crying, laughing, discussing life and of course, this hearing. One thing led to another, and the next thing we knew, Senators Susan Collins and Bill Nelson invited Chip to testify.

Anybody who has ever worked on the Hill usually adds to NEVER testify before a House or Senate Committee to their bucket list, but as Chip said, being invited is way better than being subpoenaed to testify. Four years ago, Chip was writing hearing questions for Senator Collins and staffing her at hearings, and on Wednesday, he will find himself on the opposite side of the dais answering questions from the Senator and other members of the Senate Aging Committee.

I am super proud of Chip for wanting to do this. As I’ve told a few people, he is on the panel with some really big names like Harold Varmus and Valerie Harper…you know, Mary Tyler Moore! Chip kindly informed me that Mary Tyler Moore was actually Mary Tyler Moore, and Valerie Harper was Rhoda on The Mary Tyler Moore Show to which I rolled my eyes and mockingly threw up some air quotes while mouthing “details…”

– Sheila

FDA Approves LDK 378

30 Apr

Chip and I are thrilled to have learned the Novartis trial drug he was on from March 28, 2013, to January 26, 2014, at Fox Chase Cancer Center in Philadelphia received breakthrough approval from the FDA yesterday. To think Chip was one of only 163 patients enrolled in this clinical trial is pretty astonishing.

We are so grateful for our proximity to Philadelphia from Washington, D.C., and that we had access to this trial and the means to travel every couple of weeks to receive this drug that provided him and our family with nine months of quality-filled days. To think Chip played a role in helping others who share the ALK+ genetic mutation to now have access to this drug is incredibly rewarding. You can read the related press release below.

Chip and I are also looking forward to attending a briefing in the Senate next week as guests of the Senate Special Committee on Aging, where the FDA Director, Janet Woodcock, will speak specifically about this drug. Details on the briefing follow.

– Sheila


Novartis gains FDA approval for Zykadia(TM), first therapy for patients with ALK+ NSCLC previously treated with the ALK inhibitor crizotinib

  • Zykadia (ceritinib) demonstrated an overall response rate of 54.6% in patients with ALK+ metastatic NSCLC who have no other treatment option[1]
  • Median duration of response to Zykadia was 7.4 months; patients in study started treatment with metastases, including brain (60%), liver (42%) and bone (42%)[1]
  • ALK+ NSCLC is driven by a rearrangement of the ALK gene, which is responsible for cancer cell growth in 2-7% of patients with NSCLC[2]
  • Approval follows FDA Breakthrough Therapy designation; regulatory application submitted in the EU and filings underway with other health authorities worldwide

Basel, April 29, 2014 – Novartis announced today that the US Food and Drug Administration (FDA) has approved Zykadia(TM) (ceritinib, previously known as LDK378) for the treatment of patients with anaplastic lymphoma kinase-positive (ALK+) metastatic non-small cell lung cancer (NSCLC) who have progressed on or are intolerant to crizotinib[1]. The approval of Zykadia addresses an unmet medical need for patients with this type of lung cancer who have progressed on prior therapy.

“Zykadia represents an important treatment option for ALK+ NSCLC patients who relapse after starting initial therapy with crizotinib,” said lead investigator Alice T. Shaw, MD, PhD, Massachusetts General Hospital Cancer Center, Boston. “This approval will affect the way we manage and monitor patients with this type of lung cancer, as we will now be able to offer them the opportunity for continued treatment response with a new ALK inhibitor.”

Lung cancer is the leading cause of cancer death worldwide. The most common type of lung cancer is NSCLC, accounting for 85-90% of all cases[3]. Of those, 2-7% are driven by a rearrangement of the ALK gene, which increases the growth of cancer cells and can be identified by a molecular test of the cancer tumor[2]. Despite significant treatment advances for patients with ALK+ NSCLC, disease progression is often inevitable and more options are needed.

The approval of Zykadia is based on a pivotal trial that included 163 patients with metastatic ALK+ NSCLC who progressed on or were intolerant to treatment with crizotinib. The most common sites of metastases in the patient population studied were brain (60%), liver (42%) and bone (42%)[1].

Among previously-treated patients, Zykadia achieved an overall response rate (ORR) of 54.6% [95% CI, 47-62%] and a median duration of response (DOR) of 7.4 months [95% CI, 5.4-10.1 months][1]. The most common adverse reactions (incidence of at least 25%) were diarrhea, nausea, elevated transaminases, vomiting, abdominal pain, fatigue, decreased appetite and constipation[1].

“The approval of Zykadia less than three and a half years after the first patient entered our clinical trial exemplifies what is possible with a highly focused approach to drug development and strong collaboration,” said Alessandro Riva, MD, President, Novartis Oncology ad interim and Global Head, Oncology Development and Medical Affairs. “The dedication of clinical investigators, patients, the FDA and others has enabled us to bring this medicine to patients in need as swiftly as possible.”

Zykadia is an oral, selective inhibitor of ALK, an important therapeutic target in lung cancer. ALK is a gene that can fuse with other genes to form an aberrant “fusion protein” that promotes the development and growth of cancer cells[4],[5]. Zykadia is one of the first medicines to be approved following FDA Breakthrough Therapy designation, which was received in March 2013 due to the significance of results observed in the pivotal trial and the serious and life-threatening nature of ALK+ NSCLC. Additional regulatory submissions for Zykadia are underway worldwide, with an application currently filed in the European Union.

[Full press release with references]


Briefing on Breakthrough Therapies: Science and Progress at the FDA

A Friends of Cancer Research Congressional Briefing on the Progress of the FDA’s Breakthrough Therapies Program

Sponsored by:

Senator Michael Bennet (D-CO), Senator Orrin Hatch (R-UT), Senator Richard Burr (R-NC)

May 6, 2014 1:30pm-2:30pm 902 Hart Senate Office Building,

Panelists:

· Janet Woodcock, M.D., Director, Center for Drug Evaluation and Research, US Food and Drug Administration (FDA)

· Ellen Sigal, Ph.D., Chair & Founder, Friends of Cancer Research

· Sandra Horning, M.D., Chief Medical Officer and Head of Global Product Development, Roche

· Urte Gayko, Ph.D., Senior Vice President of Global Regulatory Affairs, Pharmacyclics

· Moderator: Kate Rawson, Senior Editor, The RPM Report

Event Summary:

The FDA began implementing the Breakthrough Therapies Program in the summer of 2012, following the passage of the Food and Drug Administration Safety and Innovation Act (FDASIA). After a speedy rollout, many stakeholders were quick to draw attention to the benefits that a Breakthrough Designation offers, namely, increased communication between drug sponsors and high-ranking FDA officials over the course of development, and an “all hands on deck” approach to drug review. In fact, in just two years, 178 requests for Breakthrough Designation have been submitted, 41 designations have been granted, and 5 drugs have been approved from the program.

In order to allow for the continued success and growth of the FDA’s Breakthrough Therapies Program, this briefing will convene expert stakeholders to explore key lessons learned and strategies for future application of this critical initiative.

· An hour-long briefing on Capitol Hill to evaluate the progress of the FDA’s Breakthrough Therapies Program, identifying how partnerships between government and industry have facilitated the development and review of the most urgently needed treatments.

· This briefing will also allow stakeholders to discuss lessons learned through participation in the program, including how Breakthrough Therapy designation has influenced the development of specific products.

· The briefing will aim to address how the Breakthrough Therapies Program can grow and evolve to encourage even more expeditious development and review of treatments that demonstrate significant improvements over existing options.

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 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

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