The Monster Inside

“Mom…is the monster inside of me getting smaller?”  I can still hear those words that my sweet, little boy hit me with one day as he sat at the kitchen table while I stood at the counter prepping his next dose of chemotherapy pills to give to him.

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His question was a result of a conversation that he and I had just the week before about the importance of taking medicine.

It had been our first week home after he was diagnosed with T-Cell ALL (an aggressive form of leukemia). Over the five days that he had been at Yale Children’s Hospital, he had one surgery to accomplish three things: insert his port-a-cath, have a bone marrow test, and to have the first of his many spinal taps. In his hospital room, he had IV’s hooked up pumping in antibiotics and doing blood transfusions.  He had been poked, prodded, and examined.  Over and over again, he was asked to swallow disgusting tasting medicine and for the most part he graciously acquiesced to the kind nurses.  As the days passed in the hospital, he started to feel the effects of what was happening to his little body and the hospital with its caring medical staff lost their initial wonder to him.  This hospital was not his home with his comfortable room, his cozy bed and his favorite toys.  His twin brother was not allowed to be in the ward with him. He was done and ready to leave.  And more poignantly, he had made up his mind that he was not going to swallow any more of that horrible stuff they kept giving him!

But of course the nurse asked him to swallow his next dose …and our first battle began.  

Here changed my easy-going, happy-go-lucky, little boy to the classic, small child shutting down, tight lipped, turning his head away and saying “no” to taking any more medicine. I tried to negotiate with him, my husband tried to negotiate, the nurses tried to negotiate. Nicky eventually and reluctantly did take the medicine, but clearly he was upset and exhausted by the entire ordeal.  He was never like this for me before now, and it made my heart sink to see him so stressed on top of everything else that he was going through.  It compelled me think of what I needed to do to make taking chemo meds an easier process for him.  None of us wanted a repeat of the last scene.  But the fact remained that he would clearly need to swallow multiple pills each day as that is what his treatment plan called for in addition to the spinal taps, injections and IV drips.

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Needless to say, during the first week home from the hospital one the greatest challenges was to get Nicky to take all of his daily medicine.  We did not want the process of taking all of the nasty tasting pills (think rancid battery acid flavor) to be an upsetting twice daily routine for him.  Not only did we know that taking 45 minutes to coax him into taking meds was exhausting for him, but then the chances afterward of him keeping them down because he was so upset were slim.

Trust me. We tried the many ways the hospital suggested that could disguise the medicine taste, but clearly nothing was working.

There was this one day while we were still trying to work out the kinks and to find an easier way for him to take the pills that there was a struggle brewing. What was I going to do? Nicky absolutely HAD to take these chemo drugs.   

How does one explain to a young child the importance of taking medicine to help his body while not wanting to scare him with the gravity of the situation at hand?

Then the lightbulb went on in my head.  Thank you, God!

I remembered this song that he learned at church.  So sweet.  The words say something like if you want to grow, grow, grow then read your Bible and pray everyday.  It goes on to say that if you don’t read your Bible and pray everyday that you will shrink, shrink, shrink.  There were movements to go along with the song too.  The teachers actually had the kids sing it to the parents one day after they practiced. They were such cute and proud toddlers.  Picture the group of them belting out the song and bending or squatting down lower to the ground each time they repeated the words “shrink,” and likewise, imagine them all reaching high to the sky on their tippy toes each time they repeated words “grow.”

What was the connection?  Because of this song, I knew that there was something in the back of his mind that would help him understand how getting something important done benefits one’s life.

So as I looked over at him sitting at the kitchen table waiting for both my answer and for me to deliver more of his dreaded medicine, I took a breath.  I went up to him, bent at my knees, looked him in his eyes and said to him:

“Honey, this leukemia is like a monster inside of you. Not a real monster, but like a monster.  All that it wants to do is to grow and grow and grow inside of you to make you very sick.  And I know that you do not like taking all this yucky tasting medicine, but the medicine is very strong and it will help this monster to get smaller and smaller and smaller inside of you until he is all gone.”

He really did not say much to my explanation.  He simply took his meds, and we moved forward.

About a week after my reasoning with him about “the monster,” he and I were alone in the kitchen once more. Medicine time certainly had become less stressful over the past week for more than one reason.  First of all, he was simply being such a good sport about taking his chemo and not putting up a fight about it any longer.  Secondly, we had found a way to help him to more easily swallow the pills and when swallowing them by leaving much less of the awful taste in his mouth.

I was at the kitchen counter counting out his pills, double and triple checking the dosage and the labels.  Nicky was sitting at the table waiting patiently for me.  And the question came…“Mom…is the monster inside of me getting smaller?”  I stood there blinking back the tears as my mind searched quickly on the right words to answer him with.  He may have looked calm and almost distracted in a way as he waited for me to answer, but I knew that he asked because he was concerned and needed reassurance.  I wanted to respond sincerely  and convincingly. “Yes, Honey, I said, it is getting so much smaller because you are doing a great job taking all of your medicine.”  It was the simplest and best that I could do.

That answer was all that he needed.

He never brought “the monster” up again. He always took his chemo pills without complaint even as the doses increased again and again over the next three and a half years of treatment.

His monster is all gone now.  Eight and a half years gone.  We couldn’t be happier.

What about you?  What have been some of the challenging “monster” moments that you and your family have had to work through with your child?  You are welcome to share in the comment section.

Other You Are My Sonshine posts:

A kid’s perspective on surviving cancer:https://urmysnshine.wordpress.com/2015/03/15/that-was-then-this-is-now-2/

What exactly is chemotherapy and how does one explain it to someone?:https://urmysnshine.wordpress.com/2015/02/13/chemotherapy-umbrella/

Creative ways to motivate a child to take his or her chemo:https://urmysnshine.wordpress.com/2015/01/24/must-do-can-do-chart-for-kids-on-chemo/

Laughter a caregiver can connect to!:https://urmysnshine.wordpress.com/2015/01/18/let-the-laughter-in/

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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.

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

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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:

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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.”

Stacey

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Chemotherapy Umbrella

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Did you ever have any of those-”I really have no clue but am afraid to ask” situations? I don’t know about you, reader, but what I knew about “chemo” before my son was diagnosed was very limited.  What I did know was that when a person had cancer, then they had to have chemotherapy in order to get better.  Was chemotherapy a drug, a few drugs, radiation…what?  I was totally clueless!. And honestly, even though I knew some people who had cancer, I was not close enough to them to learn exactly what chemotherapy was all about.

And then our son was diagnosed with leukemia.  I now know more about chemo then I ever wanted to.  Maybe ignorance was bliss, no?

When Nicky was receiving treatment, I had others who surrounded me who knew as much about chemo as I once did.  They were also unsure about what this secret remedy “behind the curtain” was as well.  Some were brave enough to ask what medicine Nicky was taking, some would try to read up on it to be supportive, while others were apprehensive about asking any questions at all.

Sympathy is when a person has compassion for another person’s sadness or pain. On the other hand, empathy allows a person to have a deeper understanding of that pain or sadness either because of a personal experience or of their own innate ability to imagine and connect.  I can see how being able to understand what chemo is allows a person to be empathetic towards others who have cancer.  This “empathy” allows friends and family to offer incredible support to the one going through chemo or to those who are taking care of a child or family member who is not well.

In her book, Childhood Leukemia, Nancy Keene writes that “The word chemotherapy is derived from the combination “chemical and therapy or treatment. It means using drugs, singly or in combination, to destroy or disrupt the growth of cancer cells without permanently damaging normal cells.” p.171

If any of you are supporting a friend who has a child or loved one who is going through chemo, then be encouraged to simply go ahead and ask about their treatment. That person acting as the primary caregiver can feel very isolated in a few ways.  One is in a physical manner because of the time distanced from others while taking care of the child. And the other is by having an emotional disconnect because of how others cannot possibly understand all that the child and the family are enduring. True friends will gently ask, be open and genuinely interested when explanations are given.

Sometimes when people asked me about chemo, I would simply explain it the way I understood it best.  To me, chemotherapy is like an umbrella.  Under it are all of the treatment medicines that are right for a particular type of cancer. Once it was determined exactly which type of leukemia (cancer of the blood) that Nicky had, then the doctors knew the exact protocol that he would receive.

Nicky’s protocol was AALL0232.  You can see in the umbrella graphic above all of the various medicines that fall under it. Some drugs were given every day or on certain days each month.  Other drugs were given at different stages in this three and a half year plan.  How the drugs were administered varied: orally, intravenously, intrathecally (spinal tap), subcutaneously (injections that went just under the skin), or intramuscularly (injections that went into large muscles).  Many times the drugs were administered in more than just one way to reach different targeted areas.

The hospital where Nicky was treated was the right place for him to be.  We felt good about the treatment plan, the doctors, nurses and staff as well as the facility.  If for some reason we moved or had wanted to go elsewhere, Nicky would have received the same exact treatment. This specific protocol is what hospitals around the country use to successfully treat this type of leukemia (T-Cell ALL).

Hmm…looking over the medicines, it looks light–meds are missing. The missing medicines are those he took because of the chemo.  The antinausea drug (Zofran), antibiotics, Fentanyl and Versed (for pain and to reduce memory during spinal tap), Morphine, Oxycodone, Colace, Glycolax and many other side effect drugs that helped his body to deal with the weakened state that it was in.

For those of you who are standing by and supporting someone with cancer, does this help your understanding a bit of what a friend or a friend’s child may be going through?  How about you, reader?  Are you one who may be experiencing or perhaps have already experienced something similar to this? How do you explain being “in treatment” to others?

And lastly, how does it help to have others understand what is happening?

Please share your comments.

Stacey

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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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Thanks for reading this blog.  Please leave a comment or question. Click on “follow me” to automatically see new updates.

Stacey

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Must Do, Can Do Chart for Kids on Chemo

Taking chemo every day, multiple times a day gets old and frustrating for
anyone having to do it.
Sometimes a child needs a little motivation!

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Besides going to the hospital weekly for chemo, there were a few months when Nicky had to take a variety of medicines multiple times a day at home as well as care for his mouth (some of chemotherapy drugs* that he was on for a short time could cause mouth sores). So here was a child who did not feel terrific and who had to be asked over and over again throughout the day to swallow more horribly tasting pills, and to swab his mouth with a disgusting liquid medicine, or better yet-to have to put a pill under his tongue to fight nausea while feeling nauseous!

Up went the Must Do, Can Do chart.

This chart helped empower him for a few reasons.  For one, he knew exactly what it was he would have to get through each day from the “Must Do” part of the chart.  Knowing what to expect helped him to be less upset when I said it was time for his medicine.  Two, there were fun choices that he could decide about from the “Can Do” section.  And lastly, Nicky could see which days would be hospital free days and which day he would need to take the road trip up to Yale Children’s Hospital for treatment.

Nicky last saw this chart when he was six years old.  He and his brother are fourteen going on fifteen now. We were talking about what might help a teen get through those tough days when a person feels like crap, needs to be pretty isolated from others because the immune system is weak, and to top it off has to take all the medicine. Together we designed these two coupon books-real easy and you can make your own.

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Next we brainstormed ideas for the coupons to go inside the booklets:

  • pizza delivery
  • new magazine
  • back massage
  • make ice cream sodas
  • breakfast for dinner
  • have a friend over to watch a movie
  • play cards
  • henna tattoo on the head

Readers-What ideas can you share here with others about how to empower and encourage a child or a teen in the thick of chemo?  Share your thoughts in the comment section for all to see! Hint: to leave a comment you must click on the title of this post and the “Leave a Reply” section pops up!  

Want to check out the ideas readers have shared?  Simply click any of the “Comments Welcome” section to the right of this page! …you can also click on the post title and comments will show up at the bottom 🙂

*Daunorubicin, Doxorubicin, Cytarabine, and Cyclophosphamide

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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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My “About Me” Page

In the future, this information will be in the About Me section of my blog.  Bear with me,  I am navigating how to set up this blog site as I go!

My name is Stacey. I am a mom of twin teenaged boys and an English Language Tutor living in Connecticut with my husband.  I enjoy having time to read, garden, cook, and reimagine furniture. Gone are the days when I would search through magazines for ideas, and hello Pinterest! You can visit my site, and maybe you will be inspired to try something new yourself.

My family and I have been on quite a journey over the last few years because of cancer.  But we now have two amazing survivors in our home.

This is my first blog. Along the way, there will be recipes.  Some that were helpful during chemo and some that are simply house favorites. My hope is that what I write will encourage those of you who have a child with leukemia or a similar illness.  Many of my stories are as a result of when our son had T-cell leukemia. When he was sick, it was so helpful for me to hear the success stories of those who made it through.  It gave me hope and comfort to hear from people who had been there and truly understood what chemo treatment was like.

Our son just finished his five year “watch” window post chemo last month!  My husband is a five year survivor as well.  We have lots to be thankful for!

For whatever reason you choose to follow my blog, may it bring a little “sunshine” into your day!

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Today is the Day!

The new year is coming! I think that I signed up to write this blog MONTHS ago. Challenging myself to actually start writing it during 2015. Learning process involved here as I have never actually written a blog before, so bear with me. Will try to make my next post say what it is my blog will be about. Here I go!

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.”

Eleanor Roosevelt

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