cancer · Childhood Cancer Awareness Month · parenting · special needs parenting · Uncategorized

The Clinic Visit 

Today was Ben’s 6 month visit to the Hematology/Oncology (Hem/Onc) clinic.  So I thought, “hey, I can take photos and blog about his visit for Childhood Cancer Awareness Month.” I took my brilliant idea and ran with it. 

The clinic, as we close friends call it for short, is well stocked with snacks, which makes sense both for kids who struggle to get enough calories and for the steroid loaded kids who can’t get enough. 

Pause. 

Quick story. When Ben first started treatment there were procedures about weekly, and the kids would usually end up scheduled on the same day together, so we got tight with a group of kids. Back then we had a long walk to the sedation area, and we’d go in a little train of parents and staff with kids in wagons and wheelchairs. There was one little boy who was in the solid month of steroids at the start of his treatment, he was a cute little 3 or 4 year old. The kids had to have empty stomachs on procedure days because they’re sedated (procedures are usually lumbar punctures or bone marrow aspirations).  Anyway, this one little guy would spend his mornings waxing poetic about food.  He’d be riding along in his wagon saying, “I’m gonna have me some pieeeza, and I’m gonna have me a haambuurger with fries and ketchup, and I’m gonna have me some buhsketti, and maybe some Oreos…” And that little guy would just go on like that until his turn for sedation came. 

I digress. 

Check in consists of getting vitals checked and then we get ushered off to a room. As soon as we put out stuff down, we make a quick trip to the nutrition area where Ben gets his chocolate milk and cereal, and we hang out. 


The nurse comes in and reviews history and current med list, and then the blood draw. 

Sometimes Ben does okay with blood draws.  I’m not sure why, maybe it’s because he’s had a couple of hospitalizations since the last one, and several other blood draws, but Ben lost it. 

I don’t blame him. 

It sometimes takes numerous pokes to draw blood or start an IV, and when you’ve been putting up with that since infancy, well, sometimes you flip your lid. I meant to get a photo, but that wasn’t going to happen, so here’s the “after”. 

While we wait for the blood tests to run, a doctor or mid level practitioner (PA or NP), does a history and physical exam. 

Michele was the nurse practitioner who examined Ben today. We’ve known her since the very start, she’s kind, approachable, measured, smart, diligent and just plain spectacular. We went over the history of Ben’s last 6 months.  There was plenty to discuss. 2 surgeries;the reemergence of Cyclic Vomiting, along with the hospitalization for that. The referral to Nationwide Children’s for motility studies.  Throw in there the Parkinsonism, a visit to Infectious Disease docs, and new referrals to allergists and pulmonologists and you have yourself quite a stacked 6 months. 

Or, for us, “normal”.  

Michele, being the spectacular individual she is, paused at the end of the visit. She set aside her professional demeanor, and told me how bad she feels for all that has occurred. 

I quipped back that, well, we’re used to it, it’s just how it is, and we roll with it. 

Her eyes reddened and misted. She said, “I know, it’s normal to you, that’s why I feel bad, Ben just always has a work up like this. Every time. It’s not how it should be.”  

Since I completely suck at letting my guard down, my answer was, “but he just keeps bouncing back, he doesn’t know any different.”  

It seemed to make her feel better. 

Then we hung out in the playroom until Ben’s counts came back, right as rain. 

(Ben motioning to me to come play).


(Which I did, Ben gave me a checkup too).

Meanwhile, I put my lure at the wrong PokéStop. Sigh.  

cancer · Childhood Cancer Awareness Month · Uncategorized

Snapshots

I am pleased to introduce to you my friend, Erin.  Erin and I first “met” 10 years ago in an online discussion forum created for adoption triad members.  Erin happens to live near me, and we have since met. She is a person that I consider a dear friend, and I am so thankful for her presence in my life.  She is also a childhood cancer survivor.  Erin is my next guest blogger in my Childhood Cancer Awareness Month series of guest blogs.  These are her”snapshot” memories of cancer.

Erin at 5 3/4 years old. 



I was 5 ¾ (that ¾ being important to my 5-year-old self) when I was diagnosed with cancer. My memories are like snapshots throughout my treatment.

 

The snapshot of laying down in the backseat of the car and watching the lights go by as we drove the two hours to the hospital that would do my surgery and treatment.

 

The snapshot of wanting to be able to take my blanket back with me to surgery and not being allowed to have it.

 

The snapshot of waking in the hospital to a pastor praying over me, wondering if I had died.

 

The snapshot of an envelope full of hand drawn cards from my kindergarten class.

 

The snapshot of getting my stitches out in the hospital before being discharged and how painful it was.

 

The snapshot of looking down at my belly and seeing all these strips of white surrounded by the lingering yellow from the iodine.

 

The snapshot of my grandparents bringing my sisters to visit while we stayed with my aunt near the hospital to start treatments and my baby sister not wanting to go to my mom after being left with my grandparents during my hospital stay, remembering the look on my mom’s face.

 

The snapshot of going into my doctor’s office and the nurse having to do finger pokes on most of my fingers to get enough blood for counts.

 

The snapshot of when a different doctor gave me my chemo and burned the wall of vein leaving a chemical burn on my arm.

 

The snapshot of walking along the river in a park in our town and having to stop to throw up because I hated the anti-nausea suppository so much that I begged my mom not to use it.

 

The snapshot of having to sit inside at recess when I did go to school because I was too weak to play.

 

The snapshot of getting up really early and riding in the car with my dad to my clinic appointments.

 

The snapshot of getting to go to Chuck E Cheese post-chemo and playing skee ball (I still love skee ball).


Erin with her radiation techs celebrating her last radiation.  

All those snapshots of a small brown-haired, brown-eyed little girl with big glasses who fought cancer and won are what I carry with me now, 33 years later.

 

cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting · Uncategorized

Down Syndrome and Leukemia

When Alex was two years old, his pediatrician sat me down at a well child visit and outlined the symptoms of leukemia.  Why?  Because 2-3% of children with Down syndrome develop leukemia, and she wanted to be sure to catch it early if it occurred.

Though that was over 12 years ago, the memory still haunts me.

When Ben was diagnosed, we needed no reminders of the increased likelihood of leukemia in kids with Down syndrome.

You know what.  I’m struggling with this.  The words won’t come, the emotions are carefully guarded in a high tower with dragons and moats and drawbridges protecting them.  So here we go, stuffs about to get real.

Ben came home supposedly healthy.  It’s not that we insisted upon a healthy baby, but we were certainly pleased when the child with whom we were placed had no apparent health problems, because, hey, a healthy baby is a good thing.  That obviously went south pretty damn fast with hearing impairment, thyroid failure and Hirschsprung’s disease all thrown into his first year home with us.  But yeah, that’s okay, life comes with no guarantees.

Of course not, because once we got the congenital nonsense taken care of along came Cyclic Vomiting.  We had a good year ONE GOOD YEAR (during which my mother in law died and my husband and I both had major surgery), and poor Ben was body slammed with leukemia.

I literally don’t have words.

I wrote a whole book about Ben’s life so far.  I can document the crap out of all that he’s been through, but the emotions, what it actually was, there are no words.  NONE.

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The English language, rich and beautiful as it is, completely fails me when it comes to that day.

Moment by moment, I remember it so clearly, yet it’s a clustered mess of horror that I fail to untangle.

And every year almost 16,000 families live that day.

And some live an even worse day, they day their child succumbs to cancer.

By numbers it’s still over 10% of children diagnosed with cancer who die of it.  That’s almost 2000 children a year.  Numbers don’t tell the story though.  Not even close.

I wish, I wish I had some way to express to you the hell of that day.  The hell that extended for over three years of treatment.  The hell that cost Ben his ability to empty his bladder on demand, that cost him IQ points.  During treatment Ben over seven months of his life on steroids.  Steroids make Ben psychotic.  Raging, out of control, sleepless, psychotic.  In fact, after his most recent surgery, when he mistakenly got a dose, the anesthesiologist considered his reaction so severe that she recommended listing steroids as an allergy because her professional opinion was that one dose severely jeopardized his health.  He had over 200 doses during cancer treatment.

There is more, so much more.  My child, my baby, has endured far more than most people do in a lifetime, and he’s only ten.

Childhood cancer is hideous, vulgar, horrifying.  Don’t ever let a sweet photograph of a smiling bald child fool you, they are enduring hell, nothing less.

So far in September, I have walked/run 46 miles for Alex’s Million Mile March.  Would you please consider donating to this event, and help me work toward ending childhood cancer hell?

cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting

How Becoming a Runner forced me into Self Care

This morning I needed a run.  My body and mind were craving even a few miles after 2 days off.  I texted Hannah  (have I mentioned lately how much I love technology), and asked if she would babysit so I could get a few miles in.

Once upon a time that was almost impossible for me to do.

I’m that mom.  If you aren’t one you know one.  I bust my tail to ensure that everyone else gets their needs met, and wind up with my needs in last place on the docket more often than not.

Believe it or not, cancer is what changed that.

When your child has needs that so completely exceed what you can provide you are forced to enlist help.  For me, running was the catalyst for that.

I started running in the first year of Ben’s cancer treatment after letting my needs slide down into an abyss. Thankfully my husband noticed and prompted me to change.

That change was more than a positive impact, it was transformative.   Not only did running improve my mood, coping and sleep, it was addictive. I swear by endocannabinoids for quality of life (yes, the human body produces cannabinoids upon exertion, so the runner’s high is a true high, similar to pot). 

Not only that, but the literal addiction was enough for me to advocate for myself, and ask for help so I could get a run in.  Nothing else had pushed me over that line.  So I learned to ask for help, because my craving for my runner’s high was the one thing I couldn’t deny myself.

Over time I have learned to apply that to other areas of my life.  Once I learned to ask and got positive results  (I’m pretty sure my family likes me better after a run), I was able to apply the ability to other areas of life.   It’s long overdue.

cancer · Childhood Cancer Awareness Month · special needs parenting · Uncategorized

Because of Cancer

Welcome to September!  In honor of Childhood Cancer Awareness Month, I will be sharing our own perspective on childhood cancer, as well as posting some guest posts from other people impacted by childhood cancer on this blog.  Welcome to September!

The first post is by my friend Holly, whom I met at our local pediatric Hematology and Oncology Clinic.  Holly had recently adopted Sarah from China, and after asking her pediatrician about some problems with Sarah’s eye for months, they finally found out that Sarah had retinoblastoma.  When I met Holly and Sarah Ben was in his early stages of cancer treatment too. We walked together through a our own difficult paths and remain connected by that bond. 

Please enjoy Holly’s post from her own blog, “Living the Abundant Life” from the midst of a hospitalization with Sarah.


I have a few quiet moments as I sit with a sleeping little girl in our hospital room. We are only here because Sarah’s central line tubes broke, and they were repaired.  I don’t have much time at home to just be still and reflect, since there is always something to keep me busy, or my mind occupied.  But when I am here I appreciate the quiet times, and my mind so often returns to thoughts of gratitude to God.

Because of cancer in our Sarah’s life, I am so grateful to have had so many uninterrupted hours with her that would have seemed impossible to find in our normal home life.  I have learned more about her amazing little personality, and enjoyed her so much.  I have discovered precious gems about her such as her endurance and strength–her ability to trust and let go of all fear.  The way she laughs and enjoys life no matter what the circumstance.  I never would have known the extent of the strength of Sarah’s spirit if we had not traveled down this road.  I would not have known my little girl the way I know her now.

Because of cancer, I have learned about God, and I have come to know Him better than I ever could have apart from it.  I have learned in completely new ways that His promises are true.  When He says He will give us peace if we trust Him, He really means that.  I have questioned Him and trusted Him, and I know whatever the outcome of all of this, I would trust Him still.  He has shown Himself so real to me.  So real, that at times I have felt completely and totally surrounded and filled by Him.  I have learned that the worst, most scary things we can imagine are not so scary when God is walking with you through them. We can’t ever fully understand that until something like this happens. I am thankful for cancer because of this.

Because of cancer, I have learned more about myself.  I was surprised to find that I have more faith than I thought I had.  (I know that was from Him.) I have also learned that that faith could so quickly disappear, and that God loves me either way.  I have learned that when I am weak, He strengthens me.  I have learned that I really do love adopted children every bit as much as any of my biological children, and that love is fierce.  I can survive on less sleep than I thought I could.  I appreciate my children and husband more. I have grown as a person in so many ways.

Because my daughter had cancer, I have been made aware at the deepest level that childhood cancer is really here, and it is actually all around us, not some far away thing.  Sometimes every room on this floor is full.  I have gotten to know some of  the children and their parents.  I have developed sincere love and empathy when before I could only offer a helpless sympathy.  I am now able to reach these hurting families in ways I never could have before we walked this path ourselves, and I hope God allows me to use this throughout my life.

Because of cancer, I have met some of the most wonderful people I have ever known.  My life is richer just because I know them.  I watch these doctors, nurses and other staff come to work every day giving everything they have to these children and families.  They can’t have a bad day.  They always have to keep smiling and loving because they know that their problems are really nothing compared to what these kids go through.  I am in awe of their energy.  They are not only nurses and doctors–they are counselors and friends, and everyone here knows that most if not all do what they do by choice out of love.

Because of cancer, I have seen the very best in people.  Friends we know well, less well, and even strangers have encouraged us, strengthened us, given of their time, money and resources to show us love.  My boys have learned through experiencing this what God’s love in action really looks and feels like.  I am so grateful to every person who has had a part in our lives through this time.


Our precious Sarah is the one who had cancer.  She has lived it beautifully.  Probably more patiently and joyfully than most people, or even anyone I know could have.  God has shown Himself amazingly gracious and powerful in her life through this, and even before that.  She already has an amazing life story, and she is not even three years old.  I truly hate cancer.  But I am grateful for it in so many ways.  I can only hope and pray that she will be able to see as she grows that even though it was not fair that she got sick , God is good through it all.  I have heard the quote, “Don’t waste your cancer.”  I made it my goal at the beginning to make that my goal.  To live each day with my eyes and ears open, waiting to experience what God wanted me to learn and gain through this.  I am thankful that I did just that, and that He poured His abundance out on me and really all of us, the whole time.  My prayer is that Sarah will know God and that same abundance He gives as well.

This list really only scratches the surface of everything I could say about this.  I would never, ever hope for someone else’s family to hear the news that cancer is in their family, but I want to encourage you that if it ever does happen, do not be afraid!  God is so good and loving.  He can and will use it for our good if we let Him.


I can honestly say, because of cancer I am thankful.

cancer · special needs parenting · Uncategorized

5 Things You Can Expect from Me this September

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I’m giving you fair warning.  September is coming, and September is Childhood Cancer Awareness Month.  That means that for the whole month of September, this blog will be focused on Childhood Cancer Awareness.  Here’s what you can expect:

  1. I will be hosting guest posts.  If you are impacted by childhood cancer in any way, you’re invited to write a guest post for the blog.  Just comment on this post and I will connect with you to facilitate your guest post.  You do not have to be a blogger or a writer, I’ll be happy to help with editing etc., just write your heart!
  2. I’ll be sharing our family’s story along with the guest posts.
  3. My ebook, “What Can I Do to Help” will be FREE on Kindle from September 3-7.  I’ll be reminding you to load it onto your Kindle.  It’s a simple guide for stepping into the gap when someone you know has a child diagnosed with cancer.
  4. I will be participating in Alex’s Million Mile March.  As a runner and a parent of a cancer survivor, this is a natural fit.  I will be logging miles toward the million mile goal, and raising money to fund childhood cancer research while I’m at it.  I’ll be giving you many chances to donate, but why wait, do it now.  In case you’re wondering where your money goes, here’s the link for that.
  5. I’m going to be getting under your skin if at all possible.  Childhood cancer isn’t rare, and it isn’t okay.  I have several friends whose children’s lives were stolen from them by cancer, I have many friends currently battling, and many wounded warriors, kids like Ben who fought valiantly, and paid dearly with lifelong effects of treatment.

This is your advanced notice. I want you to get involved.  If childhood cancer hasn’t effected you yet, count your blessings and come alongside those of us it has impacted, and if it has, I’m preaching to the choir.  There are dozens of ways you can help raise awareness, from “going gold” on your social media, to donating to Alex’s Million Mile March, to finding another reputable organization to share your donation, to visiting your local children’s hospital (only if you’re totally well), or seeing what they have on their wish lists.  Leave a comment and let me know how you’re getting involved!