Donna's Cancer Story: Harvest

This is the eighth of thirty-one installments of Donna's Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna's thirty-one months of treatment.

I'm sorry, Donna

Autumn is the harvest season, and it's no different when you live in Cancerville.  The docs had recommended a stem cell harvest for Donna to extract then freeze her healthy stem cells to be used for a transplant or "insurance," whatever that meant.  I shudder when I look back at our journal and realize just how naive we were, how little we knew.  Thank goodness for that.  I always say, 'enjoy your naivete, cause when it's gone, it's gone.'  Like your virginity or a plate of fried chicken on the 4th of July. 

Looking at these photographs of Donna is very hard for me.  My first thought upon seeing them was, "Oh my God, my daughter has cancer."  Mind you, this was eight months into diagnosis.  Despite hair loss and vomiting and sunken eyes, much of the time Donna was able to raise our spirits and awareness to a place beyond cancer.  Seeing these photos there was no denying that Donna was in great peril and so, so vulnerable.  The opposite of a vampire, Cancer Donna was only visible in print.  In person, Donna was just Donna, the girl we loved. 

Stem cell harvest is an arduous process that involved the insertion of a central line in Donna's jugular vein placed under anesthetia.  Donna's blood was removed, the desired stem cells extracted from her blood, then the blood returned to her body.  The machine that the blood is filtered through is called an apheresis machine and it looks like a retro computer from the 1960s, with lots of knobs, dials, and lights.  A threshold number of extracted stem cells are required for it to be considered successful and Donna's weary body was tired; the chemo had killed healthy cells off just as it had the cancer cells.  As a result, Donna had five eight hour days on this Godforsaken contraption, two last month and three this month. 

All the wires
At the end of the fifth day, we were approached by the stem cell team who wanted to talk and complete paperwork.  What the what?  As far as we knew, our oncologist was leaning towards a watch and wait approach.  Proton beam radiation was still on the table.  And yet here were a team of folks telling us otherwise, that Donna would require a tandem stem cell transplant with a 5-15% mortality rate.  This was a team of folks we had just met moments earlier, a team of folks who knew more about the plan for our daughter's care than we did.  I was angry.  That night I wrote:

"If a transplant/rescue is what is decided is best for Donna, we will do that.  We will carry her through, just as she will carry us through.  All we ask is to be part of the decision process -- not the after thought the stem cell team kind of insists on making us.  The stem cell doc tried to reassure us today by calling us the "quarterback" of the team.  If he knew me, he would know that you don't use a freaking sports analogy when talking about Donna's health, and that if we were the quarterback, we would call an audible and go home and forget any of this ever happened."

We were overwhelmed.  As I write these posts, there is a disbelief that Donna went through any of this at all.  There is a disbelief that we went through this with her.  How?  On?  Earth?  I don't know, except you do what you need to do in the moment.  Just like Donna. 

Several days later, we met with our oncologist who confirmed our fears.  Yes, the team had shifted gears and was now recommending a tandem stem cell transplant.  But, honestly, what did we think Donna was hooked up to that contraption for?  A transplant would involve hard core chemo.  The stem cells are harvested in a time of health to be reinjected or "transplanted" back into the body to "rescue" the immune system, and, in effect, the patient, from death.  Without healthy stem cells, the strength of the chemo is so toxic and potent that it would kill.  Even with the stem cells, there was the anvil of the 5-15% mortality rate.  And which was it?  One person told us it was nearer to 15 than 10 and another told us, "Nah, it's more like 5-10%."  Nah?  Just like that.  Nah?  Yeah, cause that's how stem cell docs roll. 

In the photos, you see how uncomfortable Donna was.  She favored or protected the right side of her neck the entire time that tube was in.  And this was a TUBE -- no cutesy "tubie" was this monster.  I had to leave the room to breathe when the nurse pulled it out at the end of the process.  When I saw it lying there on the hospital bed I gasped a little.  My darling, my Donna.  What were we doing to her?  And at the end of three days of harvest, Donna's reward was another dose of VAdriaC. 

The TUBE<

 After a visit to the oncology playroom during this hospital stay, I wrote:

"This admission was a lesson on the continuum of cancer.  For the first time in memory, Donna was the sickest kid in the room.  It's hard to be the parent of a child with cancer, but it's harder to be the parent of the sickest kid in the room.  It feels so defeating and hope dashing.  It brings out the worst in me.  You actually start to envy kids with different cancers.  That's just wrong."

You know your kid is sick when you're jealous of another kid's cancer.   

But like the stock market I referenced a few months ago, there are ups and downs to cancer.  The VAdriaC was simply less potent and Donna recovered more quickly from it's grasp.  The color on her cheeks reappeared this month for the first time since June.  That's five months ago for those keeping score at home.  Halloween (Little Red Riding Hood) and Thanksgiving (where you see Donna below) were spent in health and Donna enjoyed them both.  Donna's chemo cycles were over.  She had not only survived them, but thrived.  Though there were sixteen hospitalizations since we moved to Cancerville, there wasn't a single infection under chemo and Donna recovered amazingly well, the docs assured us.  Take that, bastard cancer.  Donna was a rock star. 

Donna on Thanksgiving

Tomorrow:  Stem Cell Transplant

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  • Donna is the cutest girl ever! As hard as it is to look at the photos, I'm so glad you have them to honor and remember Donna.

  • In reply to Yoga Mom:

    Thanks, Yoga Mom. We have loads and barrels of photos of Donna, but honestly, very few from her hospital visits. I just didn't want to remember her that way. In some ways I'm glad we discouraged hospital photos, in other ways, it makes me sad. Was I just trying to ignore the crap that cancer brings? Was I trying to shape our memories with rose colored glasses? I don't know. A few months before Donna was born someone took photos of my Mom, the original Donna, in her coffin and I had an intense, visceral reaction. My Mom would have HATED to have those photos out there. She would have considered a tremendous breach of privacy, so that might have influenced us, too. Thank you for reading. Namaste to you and yours.

  • In reply to Mary Tyler Mom:

    Visceral reaction. I like that. That's what I experienced as I watched some stranger filming my father's funeral. I stood with my mother and brother and two young children (ages 5 and 6) at the cemetery as the priest said a prayer. As they lowered the casket, the realization hits you, this is forever. You won't get to see your loved one again (their earthly being), touch them, smell them, hug them. This is it. I remember these sobs that shook my body, my very core. I remember my mom hanging on to me (or was I hanging on to her?). My brother standing perfectly still, emotionless. My kids FALLING to the floor bawling, crying for grandpa not leave. I looked up and there was this stranger video taping the whole thing. I felt such rage, I wanted to plow him over with the stupid truck idling noisily, full of dirt. I later found out he was a distant relative who was filming the whole thing to send a video to family members who couldn't make it. I was shocked to say the least, also because I found out he had filmed my dad in his coffin. my father didn't even like his photograph taken, EVER! What were these out of town relatives going to do, make some popcorn and curl up on the couch for a nice family movie night? Five years later, I still haven't gathered the courage to confront this family member and demand he give me the videos and pictures. I'm not ready for what I might see. I will be one day soon though.

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    Your story is heartbreaking but one thing I wonder is toddlers being toddlers, did you ever have to discipline her? Maybe you have a longer fuse than I do, but I know the big C was hard on your too and I can't imagine being on my best behavior all of the time.

  • In reply to Where to Begin:

    Great, great question. Yes. We introduced time-outs just before Donna's second birthday, right around the second round of chemo. Honestly, Donna was very low maintenance with discipline. I don't know if it was that her behaviors were tamped down by chemo, or it was just her personality. Mary Tyler Son is now two and Donna did not demonstrate the same, challenges, shall we say, as he does. Honestly, discipline was hopeful because if Donna was misbehaving, it meant she felt well. Keep on reading and once we are finished with slogging through chemo, Donna becomes and gets to experience a much more balanced childhood. Just wait for the apple juice story. Not a good parenting moment. Thanks for the question!

  • Thank you for posting these stories and offering a glimpse into your beautiful world of hope. As a mom, it's inspirational to read about your grace during what's got to be every parent's nightmare. Bless you all.

  • In reply to ChefJYH:

    Thank you.

  • Thank you for sharing your stories of Donna. What a beautiful little girl. I cannot imagine having to go through what you and your family have gone through, especially Donna herself. Thankfully God blessed her with 2 wonderful parents who where there with her and for her throughout the whole thing, to hold her, and play with her, and love her, and rock her. Not every sick child is as fortunate . God bless you and your family.

  • Thank you for sharing your story, God bless you and your family.

  • God bless you. I wish you all the best.

  • ". . . this Godforsaken contraption. . ."

    Interesting choice of words especially to those of us who believe God is the author of the knowledge that gives us weapons to fight diseases and the means to heal when our lives hit a rough patch.

    And yes, I know what it feels like to try to wrap my mind around "my daughter has cancer."

    May you find the strength, wisdom, humor, and support to see you through this rough patch in your lives. I pray your daughter has the same outcome as mine.

  • In reply to jkatze:

    JKatze,
    I'm assuming your daughter had a happy ending? That is wondeful!

    Did you read "About" Mary Tyler Mom above before commenting?

    She can call that "Godforsaken contaption" whatever the F*@& she wants :) I think G0d understands. He is loving and forgiving and, most of all, not judgmental.

  • In reply to FernRonay:

    I'm so glad you said something because I'm sure it was more eloquent than what I was gonna say. I love how people can judge before they know anything. Thank you!

  • Your story is all too familiar....my mother has stage 4 cancer....uterine but that is gone...that damn cancer had to travel to her brain....she is in a nursing home living out what is the dreadful end....but she still is feisty....i give you hope, prayer, a smile at best because you are this seemingly strong mom and dad but fragile at the same time....caringbridge is a great place to settle the thoughts of one's mind...i would write in it myself but your words are a bit more poetic than mine....cancer....one is never prepared and doctors can be so sterile and distant....sometimes, i blame myself for what i have done to my mom in hopes to win her back....i know ur fight is to allow your daughter to live a life...to grow and run like the wind down a street...to ride a bike...to fall in love....to do those teenage things...ur daughter will guide you to the right decisions...those who suffer usually are the ones that know the best answer....many blessings....and keep up the good fight....whatever you intend it to be...

  • This just sucks. I can't stop crying. I am falling in love with your daughter and I want this to have a happy ending. I demand it. Please change it.

    I know I'm being ridiculous but, well, like I said, this just sucks. I don't know how else to put it. Thank you for sharing Donna's story, your family's story. You're a wonderful writer, and I don't think there are enough of those anymore.

    I feel like I should say more, but any words I type look pathetic. Because of Donna, because of you, I'm going to try to be a better "don't sweat the small stuff" kind of mother. And I'm going to help fight this evil beast called pediatic cancer.

  • In reply to sochbeamjo5:

    Would that it were so easy. Just a few strokes on the keyboard and justice restored! Sigh. Thank you for reading. Truly. Thank you for reading. At the end of the series I will write one final post identifying how folks can help.

  • In reply to Mary Tyler Mom:

    I will look for that final post, checkbook in hand.

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