Easter Rising

Easter Sunday, April 1st, 2018, 6:14 am.

We’ll begin at that moment, when the new season began, when the early gray light of dawn seemed to shift and Sarah took her final peaceful breaths with her parents’ hands on her heart.

I’ll be there for you
(When the rain starts to pour)
I’ll be there for you
(Like I’ve been there before)
I’ll be there for you
(‘Cause you’re there for me too)*

In the end Sarah brought us all together, and we were all there for her, and for each other.

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Dear friends and fans of Smiling with Sarah,

Those of you familiar with Sarah’s life, however brief or however intimate, may feel surprised – or devastated – or heartbroken – by this news, especially given Sarah’s last blog post from October where she shared her amazing news that the cancer was gone.  You just never know what life will bring, do you?

At the beginning of March Sarah was still cancer free and was full of excitement for the chapter of her life that would begin after the coming conclusion of her current treatment, which was participation in a clinical trial for a cancer vaccine.  She had completed 10 vaccines out of 12, and, being the planner that she was, she had the next few months mapped out: vaccine 11 on Monday, March 11th, chaperoning her brother’s band trip to Universal Studios at the end of March, Easter plans for Abbie, the start of baseball season, John’s graduation… and so much more.  Sarah was spending her time raising her rambunctious two-year-old, faithfully attending her baby brother’s senior year basketball games, and spending time with family and friends, and didn’t find the time to update her blog about all of those joys.

 

 

 

Nor did she find time to update you all about the persistent loss of appetite or the nagging shortness of breath….

Sarah noticed a small red rash on her chest around the beginning of February, which grew over time and was accompanied by pain.  But since her blood work and x-rays kept coming back relatively normal, her doctors eventually prescribed an antiviral medication for it, saying that it could be caused by shingles. Then, on Friday, March 9^th, Sarah woke up with a newly formed pustule in the same area as the red rash, went to the hospital with her mother Debbie, and was immediately admitted and sent to the ICU.  It turned out to be an abscess caused by a bacterial infection, and Sarah was immediately given a CT scan and antibiotics. The results of the initial tests were startling: Sarah had pneumonia in her right lung and a life-threatening infection in the left chest cavity where her lung had been removed (post pneumonectomy empyema).  The red rash that had been progressing for the prior month was just the ‘tip of the iceberg’ on the outside compared to the infection that had been growing internally.

Sarah said, “It definitely sucks, but we need to do everything to fix this.”

“Everything” included intubating Sarah due to breathing complications on March 11^th, sedating her to keep her comfortable and allow her body to conserve its resources, and flying her to Cleveland Clinic that night after consultation with her oncologist there, Dr. Anderson.

Once in Cleveland, the plan was to treat the pneumonia, control any potential sources of infection, and start coordinating care between Dr. Anderson (the oncologist), Dr. Murthy (the thoracic surgeon), and the ICU.  The next several days were a steady stream of tests and trials of various treatments, and she responded positively to these initial treatments.  It soon became clear that though the cancer remained gone, her previous treatments had taken a crushing toll:  there was now a hole in her upper stomach, most likely a result of radiating previous tumors.  This greatly complicated Sarah’s treatment plan, but Debbie, Michael, and her sister Jenny, who’d arrived in the meantime, strongly advocated for her, and the medical personnel provided wonderful care, and what followed were two more weeks of ups, downs, minor surgeries, and continued sedation and intubation.  During this time they decreased Sarah’s level of sedation several times to get a better picture of how she was doing, and during one of these trials Sarah responded to a request and squeezed Dr. Anderson’s hand; he later said, “that just made my day.”

But after those weeks we were all confronted with the devastating reality that there was just too much wrong – and Sarah didn’t have enough reserves to survive the treatments that would be necessary to allow her to recover (surgery, specifically).  And though Sarah had wanted everything done to help her survive, she had also been adamant that she did not want to be confined to “life” on a machine.  And so the heartbreaking decision was made to bring her fully out of sedation and remove the breathing tube.

At that point, we knew to hope for the best but prepare for the worst. A call went out for the rest of the family to get to town, and Sarah was weaned off of sedation completely by Wednesday afternoon (March 28^th).  Sarah understood what was going on and expressed, very clearly, her wishes for the breathing tube to be removed.  In the few days before the scheduled extubation, Sarah was constantly surrounded by the love of family and friends, who had traveled from all over the world to be together and spend time with her.  The medical professionals familiar with Sarah’s case were somber, as their medical expertise led them to believe that she would not last long off the ventilator.  But on Saturday morning, March 31^st, at 8:45 a.m., Sarah insisted on sitting up in bed as the breathing tube was removed and, as usual, surpassed all expectations – surrounded by her family, Sarah coughed and starting to breathe on her own again.  She had written down one request before the tube came out – she wanted a ‘giant cup of Sonic ice’ – which she slowly ate in the midst of her loved ones, as we stood there almost beside ourselves in those heartrending moments.

After a few minutes, when relief began to penetrate our fear and anxiety, Sarah looked around at all of us, smiled, and whispered hoarsely, “We’re all here.  We did it.”

In the end, the next nearly full day together with Sarah was a deeply moving and beautiful time.  Within an hour of being extubated Sarah was transferred from the Medical ICU floor to a private hospice room, where all of us were more comfortable.  She spent the day surrounded by her husband Michael and daughter Abbie, her dad and mom and all us siblings plus a couple partners, her parents-in-law, brother- and sister-in-law, close friends, an aunt, uncle, and cousin, and our uncle BJ (the uncle who sent us to Ireland last spring).

We spent the day together, telling stories, singing, listening to music, crying, and laughing. There was a blessed abundance of laughter and funny stories, and laughing and crying at the same time. Sarah was very weak but was awake for most of the day, with varying degrees of cognizance – sometimes she was quite aware and once asked us, “Who is taking Abbie to school?”  At other times she gave her parents a hard time (“Dad, I’m not a baby!” “Mom, get out of my face!”), or sang with us, or told stories.

One hilarious moment was when we played the Friends theme-song (by far her favorite tv show) and she did the dancey arm movements that Ross does in the show’s intro, as we all sang along.  And then she said she’d gotten the timing wrong and we should play it again.

At one point we all sang “The Cat Came Back” together, which is a song our Grandpa Russell always sang for us, and later Sarah fist-pumped to “I Love Rock ‘n’ Roll.”

A particularly difficult and heartbreaking moment was when she took off her nasal oxygen tube and wanted to get out of bed and said she was ready to go home to Illinois and asked what we were waiting for, that she just really wanted to go home.  But we were just too far away.

We did our best to help Sarah feel calm and comfortable all day.  Doctors and nurses came in to check on her sometimes, asking about her pain levels and comfort, to which Sarah would smile and sweetly reply, “I am feeling fine, thank you.”

Abbie came and went with her Grandma Lorrie and spent some good time with Sarah.  At one point, Abbie was sitting on the bed next to her and patted the little prayer cloth that was on Sarah’s chest and asked, in her little voice, “Dis helpin’ Mama?” Yes it is, sweet girl, yes it is.  In the evening before she went off to bed Abbie kissed her mama and patted her head and blew her a kiss from the doorway and said, “Bye-bye Mama! My love you!”

In the late evening the atmosphere in some ways became almost like a slumber party, and we were all functioning on varying amounts of little sleep and starting to get a little goofy.  Five people were piled on the single bed, two on the long window seat, four of us were sitting on the floor, three were on chairs, and Sarah was on a recliner, usually asleep. Music continued on various phones – “Tears in Heaven” followed by “Don‘t Think Twice it’s Alright” followed by “I’ll Fly Away.”  Snarky comments and teasing and funny stories, followed by random discussions about movies, followed by tearful stories and singing along. It was a bonding experience, heartwarming as well as heartbreaking, and there was a blessed amount of levity mixed into the sorrow.

One memorable exchange:

Debbie (Sarah’s mom), in a concerned voice: Sarah, you just need to rest.
Sarah, forceful and stubborn, despite her weakness and hoarse whisper:  People have been telling me to rest for a damn long time.

But rest is eventually necessary and as the night wore on most of us gradually went off to our hotel rooms to get some sleep.   Sarah’s night was peaceful as her parents held vigil, and Uncle BJ came in shortly before six.

A little later, as the sky slowly lightened, we all stood around her bed and held hands, and listened to a few more songs, and prayed and hugged and cried, and felt so grateful that if she’d had to go, that it was on Easter morning.

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Sarah’s last wish was to give back as much as she could to the science that had allowed her life to be so much longer than it otherwise might have been.  So not only was it a blessing that she had made it to Cleveland so that everything possible could be done to try to ‘fix this,’ but also, ultimately, so that her final wish to give back could be granted: because she was in Cleveland, the doctors could coordinate tissue contributions to give an amazing boost of vital information to the vaccine study in which she was participating.

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But life will call with daffodils
And morning glorious blue skies
You’ll think of me some memory
And softly smile to your surprise

And even though you love me still
You will know where you belong
Just give it time, we’ll both be fine
When I’m gone.**

 

And so we open our eyes to Abbie’s little voice insisting that we wake up, and we brush her curly strawberry hair and put it up in four crazy pigtails, and she puts on her boots and heads out to pick some of the daffodils that fill the fields every spring, that Sarah loved so much. And the rain falls and loved ones come by until the kitchen is overflowing with food and friendship and love, and we tell stories that make us laugh and cry and laugh some more.

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We will end with Sarah’s own thoughts from her last blog post, and we raise our voices and send these words up to her:

We want to thank you.  Your strength gave us strength.  Your hope gave us hope. Your love and prayers gave us a light when it seemed like the dark would last forever.  We do not have enough words to thank you for the impact you will forever have on our lives.

We’re sending love to all of you out there, with so much appreciation for your support of our dear sister.

Rivanna, Nessa, ❤, Jenny, Kate, Bekah, and John.

 

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Sarah will be laid to rest in her beloved Southern Illinois this weekend.  Visitation will be on Friday, April 6^th, from 4 – 9 p.m., at Cobden High School, in Cobden, Illinois, with a prayer service at 7 p.m.  A funeral mass will be celebrated at 9 a.m. on April 7^th at St. Joseph’s Catholic Church in Cobden, with the burial following immediately at the Cobden Cemetery.

Sarah’s childhood home is blooming with daffodils, so in lieu of flowers or other arrangements, we are requesting donations be made to Sarah’s Festival of LIFE through her website, SmilingWithSarah.com.

 

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* FRIENDS theme song, “I’ll Be There For You,” The Rembrandts
** “When I’m Gone,” Joey + Rory