Letters from Family Camp: Dear Jeni

Dear Jeni,

            Welcome to Lang Family Camp.  We went to family camp once, remember?  Green Bay Bible Camp.  I remember very little other than we had really nice cabin mates, and that there was a boy named David in our kids group who told us dirty jokes.  They were so dirty we didn’t even know what they meant. 

            Recently, your friend Susan sent me a message with a picture of your grave on Memorial Day.  She takes her sweet family up there every year with flowers.  I was so touched and told her I was glad she still remembered you.  She proceeded to tell me that she did more than just remember you, but that she went up there often just to talk to you.  At important moments in her life—good or bad—she would go up and chat with you.  I was shocked.  I was a little mind-blown.  And most of all, I felt envious.  You were still so alive to her.  Maybe I can blame that on her living closer to your grave, or that she was a better friend to you in life than I had been.  But it made me want to bring you back into my life.  

            How do I do that?  26 years is a long time to go without speaking.  So, here we are.  At my kitchen table.  I have a pile of old letters that our dear friend Jodi from South Dakota sent me that she saved all these years that you and I had written to her when we were all kids.  These are very embarrassing and beautiful to read, containing a detailed account of all of the crushes we had in middle school and how we needed to convert them, and also what we bought on our most recent shopping trip.  I was also just granted access to your medical file.  I wrote to the Seattle Cancer Care Alliance a few weeks ago to see if I could get it.  After a little bit of run around, tracking down death certificates, power of attorney statements and all that, they finally believed that I had a legal right to it (“How is it possible that your whole family died?” they wondered.  Yep, I know, but it’s true).  I printed it off last week and flipped through it, not knowing really what I expected to gain from reading over all of the charts and medical language.  But tonight, I looked at every page (well, I skipped over some of the blood count reports.  You had a lot of blood count reports.).  And there it all was.  A detailed account of people desperately working to save your life.  

            “16-year old Caucasian girl with acute lymphoblastic leukemia currently in third remission… she was entirely well until April 1984, when, at the age of 8, she developed bony pain in her right leg… She was treated in Fargo, North Dakota and achieved a complete remission by day 14 and remained in remission for 5 years, until May 1989.  At the point, she developed low back pain and was treated in Minneapolis, Minnesota… She and her family then moved to Spokane and she did well until September 1992, when she developed her second bone marrow relapse…”

            And the rest is history, so they say.  Most of the reading was pretty scientific.  I guess I wanted something more like bedside notes from your nurses, “Jeni prefers luke-warm apple juice to chilled orange juice.”  Or like a guest book of everyone who visited you, or all of the names of your stuffed animals.  The only really personal information I found was this: “Problem #17- Emotional [this particular report had a large number of ‘problems’.  Usually they were less than 10 and didn’t get personal.] The patient’s coping skills are poor, and the patient has a tendency towards whining… Jennifer [they spelled your name wrong almost every time] likes to know what treatment is planned and required sedation for invasive procedures.  Despite a lack of maturity [you were 15!], Jenny is very courteous and cooperative and provides excellent self-care…Her father is the main care provider as her mother is quite debilitated from multiple sclerosis.”

            Oh, Jeni.  I laughed hysterically until I was sobbing.  I just wanted to reach across space and time and shake them.  Shake them hard, and say, “She was a CHILD!  A child in plastic bubble solitary confinement, pumped full of poison, bleeding inside, sores in her mouth, FOR THE THIRD TIME!”  They had the audacity to say you were prone to whining, and how dare you want to know what treatment is planned or want SEDATION for INVASIVE PROCEDURES?  Oh, and by the way, she also has a sick mom.  “Lack of maturity”?  What did they expect?             

            All of the paperwork was also there for tracking down your bone marrow donor.  I wasn’t a match, we actually aren’t even the same blood type.  They found an unrelated donor.  She was listed in the files only as a number.  I remembered her name (which they couldn’t legally give us until after you had died) and looked her up on Facebook.  There she was: still alive.  She’s still alive.  There’s a picture on her page with 4 generations of women from her family.  I thought about sending her a friend request, explaining who I was, wondering if she remembered our family.  But I don’t know what purpose it would serve.  

            There are just pages and pages of lists of medications and tests and scans and pokes and prods and counts and measurements and speculations and diagnoses.  Shit, Jeni, I’d be whiny, too.  

            I’m so sorry that your life was this.  That any normalcy disappeared the second you had that pain in your leg.  The other personal note I found among all of the data was in the notes from a consultation before your transplant: “The patient and her father did not want us to go into great detail as far as the probability and percentages of complications and survival are concerned…”  We were not prepared for you to die.  We didn’t want to know.  We couldn’t believe the odds.  This treatment was our only hope.  

            And it didn’t work.  And we lost you.  

As I sit here conjuring your presence, the thing I miss most (and can sense ever so slightly with my imagination) is the feeling that you understand me.  Of all the people I’ve known in my life, you are the only one who can even come close.  You were there from my beginning.  I looked up to you from the moment I could look up.  You sat through all of the same church services I had to sit through. You were the one who pleaded with dad not to spank me because I didn’t really mean to do whatever I did (later you probably pleaded with dad to spank me for something I didn’t actually do.). We were so sad together when our dog, Popcorn, died.  We made up dance routines to Sandi Patti songs on the merry-go-round.  We watched our mom get sicker, and we couldn’t do anything about it. I wish I would have treasured that kinship when I had it.  I wish I would have understood that no matter how complicated our relationship was, the significance and the closeness could never be replicated.  

            And so now, I am missing you, for all of those days that I just tried to forget that I loved you.  I did.  I loved you. And I love you still.  Because that’s what sisters do.  Twenty-six years is a lot of time to make up.  But I’m still alive, and I want you to be alive in me. 

            I love you, Jen.  I hope there’s another side to this life, and I hope you are whole and happy there. If there is, I’ll see you later.  

            Nic

Snowballs in Avon (Oil on canvas//2019)

9 Replies to “Letters from Family Camp: Dear Jeni”

  1. Dear friend, I’m the oldest of five; I’m almost 70 and I haven’t lost any of them yet. The thought that I might someday almost kills me. How to heal from the loss of an only sister at such a young age I can hardly imagine. Thank you for sharing your story; it’s an honor to be allowed a glimpse so deeply into your heart. Blessings, Jean

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  2. Hi Nikki,
    Just happened to be up at this crazy hour. No I’m not a crazy 81 year old lady hooked on Facebook. Actually just finished devotions because that helps me get to sleep many nites. Since May 19, as soon as I laid my head on my pillow, I have had this unexplainable & yet undiagnosed pain that is keeping me up.(I am no doctor,but my gut tells me it is shingles that are staying inside.
    when I came across your heart-wrenching letter to Jeni, I just wish you weren’t so far away so I could just hold you & tell you, you will see Jeni again along with you wonderful parents. And I don’t know if you were ever told that the letter & notes of encouragement that you & Jeni sent to my brother Jim just before he died. Nikki, before he died, his wife (who was not a believer either, got the chaplain to come in & pray with him. I believe He is with Jesus now. I truly believe this because the tears rolled down his face, even tho he was in a coma & died with a smile of peace I was told by his wife at his funeral.
    Within 1&1/2 years I also lost 2 of my remaining brothers also from heart attacks. those 2 never knew what hit them. I believe God kept him alive long enough to get that message. You girls will never know how grateful I am that you spent your Sunday afternoon making those notes to him.
    Like you I miss my brothers dearly & always will. Before I got married & moved away, they were typical brothers that tormented me to no end at times, & later they made it up to me, over & over.
    Being next to the youngest of 8, 3 sisters & 4 brothers, I still understand your sadness & grief.
    I also remember the fun Ron & I had with you & Jeni when we went to Chuck & Cheeses. You were hilarious…one joke after another. Your parents were the greatest. We loved spending time with you all & so did the whole congregation.
    God Bless you and your beautiful family. From what I have seen on FB, you are wonderful parents building beautiful memories for them.
    Love you so much,

    Nancy Arnett

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    1. I can’t tell you how much it means to hear from you! Memories of you and Ron are so clear in my head. I’m pretty sure I memorized an entire joke book the day before our outing with you. That may have been my one shining comedic moment.
      Thank you so much for sharing your thoughts. Hugs to both of you!

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  3. Thanks for sharing. It’s never easy to lose those we love, is it? No matter how many years go by… Last year, I went through some intense counseling to process my mom’s death. I have now outlived her (she died when she was 42). I also got her medical records and read things just as you did. It was such a great comfort to know how valiantly she fought the cancer and how much she wanted to live. Her records showed that to me.

    Peace be with you friend, on this journey. My heart understands. Love, Denise

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  4. Nicki,

    My heart is sad for you, friend. I am an ALL survivor (diagnosed in ’83) and I am so sorry for the loss of your sister.

    Hugs,
    Jen L

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  5. I.Can’t.Even. The tears are moving at their own will. I walked with you while your mom was ill. I am broken to learn about Jen. I am so sorry, for all that she endured, and for the immense desiderium and “missing” of her for you. “I want her to be alive in me.” You’re succeeding. You are also incredibly beautiful. Enamored by you, “Mare” (Mary)

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