Posts Tagged With: twin with cancer

That was Then, This is Now

So this is the science homework that both of my boys recently had entitled “A Closer Look at Cancer.”  I kinda wish I could have been a bug on the wall when the teacher read over Nicky’s response.  Are you familiar with this KWL pre-lesson questionnaire some teachers use?  The student first writes what he already KNOWs about the subject, then what he WANTs to know, and then usually after the lesson the student goes back and fills out the what he LEARNED.  Nicky filled out his LEARNED section up front.  Nicky had T-Cell ALL leukemia, and Tim is his fraternal twin brother.


Nicky’s KWL: Know:   Personal experience    Want to Know:   Honestly nothing more    Learned: It Sucks


Tim’s KLW:  Know: It can kill and there is multiple forms  Want to know: What is it actually?

Perspective is everything.

After considering their answers, I began to wonder what I might write in a KWL chart if someone handed it to me. So here are my thoughts:

Screen Shot 2015-03-15 at 6.16.50 PM

Comments of your own reader?  What would your own KWL Chart look like?

Because hope is amazing medicine…here are parting words from Joshua 1:9:

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”


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Make your Stays Merry and Bright

There were some great replies to my last post, Must Do, Can Do Chart for Kids on Chemo.  Below, I have shared a few of my readers suggested ways to cheer up the hospital room during a kid’s stay that would work with any age!  They have also been gracious enough to share some pictures to go along with their responses.

Randi said “One of the things we did when she needed to get her chemo during overnight hospitals stays was to bring decorations for her room. Most hospital rooms are dull grey or beige (at least they were then, 15 years ago!), and bringing some streamers, drawings to hang up and other fun items not only makes the room more cheerful, but it also gives you and your child something to do (that’s fun), and gives the hospital staff something to comment on or talk about besides all the medical and bodily fluid stuff. 🙂 One time she decided to have a circus theme, complete with her stuffed animals on a ‘trapeze’ from the ceiling, red clown noses for us and required wear for anyone entering the room. She even popped popcorn and sold cups of it for a quarter a piece to the doctors and nurses. I think she made about $3.50 during that visit … 🙂

Lindsay w Blustery Day room Lindsay and friends - clown noses (1)

         Decorations      Left: “Blustery Day”  Right: “Circus”

Maryclaire said “Recently, my 26 yr old was in over the holidays so we’d added lights to her IV pole and hung stockings under the TV (which had a Yule fire video!). It really helped personalize her space. And I LOVE the idea of making people wear a clown nose. It definitely gives the patient some ‘power’ and again adds a topic not related to procedures.

More themes: Moustaches? Unicorn horns? Groucho Marx or Harry Potter glasses? Alien antennae? IV pole with Victoria IV with bows and lightsThis could be very cool.”

I wish I had thought of the streamers idea!  We brought in things like Silly String (oops, a bit messy!), window clings, mini dart boards, and sponge dart guns.  Here are some photos of when Nick pulled Nicky around through the hospital halls to fire at will.  The hospital staff always so willing to go along to make him smile.  (He could not walk well at the time because of where he was in treatment, and vision in one eye was not good so he liked to keep it covered.)

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Let the Laughter In

It was our own “go ahead, slap Weezer” scene from Steel Magnolias.  Of course if you’re not someone like me who has favorite quotes from watching the movie so often, let me explain.  It is about an uptight, serious life scene when something outrageous is said and done to lighten up the moment a bit.  Laughter was allowed to sneak in.

Our own scene started just after Nicky’s surgery. It was incredibly fortunate for him that after being admitted so recently that he would be able to get all that he needed to get accomplished by various doctors during the time he would be anesthetized during his surgical procedure.  The main purpose of the surgery was to insert his port-a-cath. The doctors worked really hard to coordinate his first bone marrow extraction in his back hip bone that would give them a closer look at the blood cells, as well as the first of many spinal taps to administer methotrexate while he would be under. There was word in the morning hours that the timing for everything may not work out and that the bone marrow and spinal tap would be done later when he would not be put asleep-which was the normal route.

Success and a blessing! Everything could be done while he would be under the anesthesia.

When his surgery was complete, a nurse came to get us and walk us to a very large open room where patients are brought just after surgery.  Here was our sweet, little guy still unconscious. He was laying on his back.  His eyelids were swollen and between his teeth he had a vice grip on a plastic piece which had guided a tube during surgery.  We barely had a moment to lean over him to kiss him and tell him how much we loved him when a technician and her equipment cart pulled up next to his bed.

She was very cheerful as she set herself up and explained to us that she needed to get a baseline echocardiogram by doing an ultrasound on his heart.  She explained that they could not manage to arrange it prior to surgery, but that she needed to get it done now.

So she started to gel up his chest and move this mini microphone looking thing around his chest.  Can you envision this?  A person’s heart is a bit to the left of the chest…and so was the larger if the two incisions necessary to insert the port just under the skin.

My husband and I were standing there watching.  Horrified describes our look well. Our eyebrows up to our hairlines, and our eyes huge as we take in what this woman is doing. She kept moving this microphone tool around his chest, applying a bit of pressure and angling it in various ways.  The only reason we kept our mouths closed was because he was totally out.  But it was getting hard to keep watching.

Then he started to wiggle.

Right away, I started to think that he might be getting uncomfortable and that I needed to request she stop for now.

But before we knew it, with eyes still closed Nicky simply lifted himself up and leaned his head a bit to the side of the bed. The side wear she was standing.

And he proceeded to puke all over this woman’s shoes.

It was a beautiful moment.

My husband and I wiped Nicky off and told him everything was OK.  Actually, he still had his eyes closed and was not ready to wake up yet.  The plastic piece from between his teeth was now on the floor.  The technician was very good about it all and made no big deal.  She finished quickly.  “Squish, squish”  The technician and her soggy nursing shoes stepped out of the puddle, backed her equipment up, and disappeared out the door.

My husband and I savored the moment.  We eyed each other with that “we shouldn’t be smiling but wasn’t that just too funny” look.

We bent over to give him more kisses and whispered “good job, Nicky!”  And that good job didn’t just cover the surgery, chemo, and diagnostic procedures he had just endured…

…but for having good aim and making us smile.

Both Nicky and Tim smile now when we tell them the story.  What healthy boy doesn’t like a good, gross story?

Don’t allow the sadness of what is going on engulf you and remain like a dark cloud over your head.  Let in the sunshine, let in the joy, let in the laughter. 

One month into treatment and just started to lose his hair.

One month into treatment and just started to lose his hair.

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Kindness Connection

Just the other day I was on LinkedIn, and a name which I had not seen for a very long time popped up under the “People You May Know” sidebar.  Back to my email, I double checked it was the same woman that I suspected and hoped that it was.  Confirmed!  I quickly sent her a note to ask her if she remembered me, to tell her how well my son was doing, and to say that I still appreciate what she did to help me so long ago.

Eight and a half years ago, my husband and I were ushered to some walled off, tiny area of the Yale-New Haven Children’s Hospital to sit and wait while our little boy was in surgery.  We had brought him into their emergency room less that twenty-four hours prior after his pediatrician told us he had leukemia. To say that our heads were spinning would be an understatement.  We found four seats tucked away in this hidden nook.  After I was seated, my husband briefly went outside to move our minivan to a place where it could remain long-term.  If they ticketed us already, he never mentioned it.  Small stuff at the time.  I sat there with with a dazed look on my face while trying to figure out where would we be able to go and ask how our son was doing when we wanted to, and wondered if someone had already told us and I missed the information.

While I waited for my husband to return, a woman took a seat next to me and made some polite conversation.  She mentioned that she was waiting for, and forgive me if I am not exact on this, her teenaged son to come out of surgery.  Did I mention that I was in a fog at that moment?  She asked me about my own child, and I shared the diagnosis that one of our twin boys was given.  She very kindly told me how she knew a family whose son had a leukemia diagnosis as well and how he had been in successful treatment for over a year at that time.  Then this very kind stranger asked me if I would like her to have the other child’s mom call me.

Another mom whose child was going through treatment and that I could talk to?

Nicky and Timmy 8/4/2006      One month before diagnosis

Nicky and Timmy 8/4/2006 One month before diagnosis

Amazing coincidence, right?  My experience with leukemia up until now was very limited.  I looked forward to talking to someone familiar with the diagnosis and the treatment protocol.

Think about how often we call our friends, our parents, or other family members to ask advice about what to do and what comforts to offer our child who has the flu, the croup, poison ivy, or some crazy virus that’s going around.  I had not given it any thought up until she mentioned it, but who exactly would I have called for advice and support about cancer?

In the blur of the moment, I gratefully gave her my name and telephone number.  Don’t you know that the woman she passed my number along to called not long after we arrive home from the hospital!  She was wonderful.  In fact, she then connected me with her friend whose son had leukemia as well.  Although after a few email I lost touch with the woman from the hospital, the two women that I met as a result of her reaching out to me were fabulous and incredibly supportive.  I am very grateful for having had all of these wonderful ladies in my life.

I certainly had to be a frightful sight that day in the waiting area after being awake for the last thirty-two hours and for as frazzled as I was. It is understandable that other people might have seen how “approachable” I looked and thought to themselves,”hmmm…maybe not,” to starting up a conversation with me!   I am so thankful that she was able to look beyond the bewilderment in my eyes and distracted look on my face and show kindness to me.

Saying hello or asking a person a question may lead you to an opportunity to be supportive or to connect them to someone who can be. May you have an opportunity soon yourself to reach out to someone.  And may those of you who need it be accepting of unexpected kindness.

“…Kindness will be your guide/Put a little love in your heart…”

Jackie DeShannon/Randy Myers/Jimmy Holiday Album: Put a Little Love in Your Heart Year: 1969

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