Posts Tagged With: caregiver support

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:

What exactly is chemotherapy and how does one explain it to someone?:

Creative ways to motivate a child to take his or her chemo:

Laughter a caregiver can connect to!:

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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.


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:

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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.”


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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.


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