Posts Tagged With: Yale-New Haven Children’s Hospital

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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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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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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