Advice for Helping Siblings of Cancer Patients by Guest Author, Lynda Tinnin Young

Lynda

Lynda T. Young, MEd, MRE

Lynda Tinnin Young is no stranger to the impact cancer has on children and their families. A retired educator, Lynda lives in Atlanta, Georgia with her husband, John, who is also retired after spending his career doing cancer research. Over the years, Lynda has volunteered at Children’s Healthcare of Atlanta, where she befriended countless cancer families. Her experiences walking the path of faith and encouragement with those families inspired her to write Hope for Families of Children with Cancer. Lynda is also a professional speaker who shares her message of hope with families of children with not only cancer, but other chronic conditions as well.

We are excited to have Lynda as a guest blogger on The Cancer Mommy today! Please enjoy this excerpt from her book, Hope for Families of Children with Cancer.

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Siblings—it’s not easy being the well one.

Make time for siblings. Get on eyelevel and ask, “What do you want to do?”

There are over 15,000 children diagnosed with cancer each year in the United States and 370,000-plus childhood cancer survivors. There are at least that many children thrust into the cancer arena with them—their siblings—the well ones. Both are victims of cancer, which affects the rest of their lives. They’re on the same road, “But miles apart,” a sibling said.  We need to bring families closer together, and help them not to pull further apart.

Siblings are not small adults; they are children, with childlike perspectives and needs. It’s easy to shove a teen sibling into the adult role in your family—but they aren’t adults—they just look that way. They communicate in various ways with the child with cancer—depending on personality, age, where in birth order.

(sidebar: Each day of our lives we make deposits in the memory banks of our children. Charles Swindoll)

Viewpoints from siblings:

“My parent’s world is now Tiffany and all the rest of us stand in line—way down the line.”

“He’s the one who’s sick. Why do I feel like I’m the burden?”

“I feel invisible—everyone asks about my brother, or they just look through me. I have needs too.”

Viewpoints from the parents:

 “Cancer siblings are a wealth of misinformation. I’d never guessed he thought that in a million years.”

“I can’t meet all their needs—I don’t even know what they are.”

“As long as a sibling doesn’t demand attention I think she’s ok. I just wish that were true.”

Helpful Hints for those who’ve been there:

 *  Tell them the truth (use age appropriate words—ask your Child Life Specialist)

*  Widen the circle—have others help with siblings (be specific with the help you need.)

*  Keep everyone in the loop: sibling’s teachers, coaches, bus drivers, friends (and their parents), anyone working with               your child.

* Take a special time with your child and do what she wants to do.

*  Keep daily routines—this gives a sense of security.

*  Give them permission to let out their frustrations and fears. You aren’t the only one on this challenging journey.

Fill sibling’s emotional tank:

*  Touch—this includes hugs for teens too.

*  Time—stop, look eye to eye, and listen. Don’t just mumble, “uh huh’ when your child talks to you. Ask where sibling would like to spend time with you.

*  Talk—encouraging words give courage to keep on keeping on. They may get daily dosages of discouraging words.

*  Gifts—not particularly expensive, just something to say, “I’m thinking about you.” Choose something meaningful just for them.

*  Deeds—what does the child DO for others- thank her for those acts and find things to do for them.

(Taken from Dr. Gary Chapman’s books on Love Languages)

And now for their unique personalities:

If your child is an extravert, give them attention they need, and make sure they spend time with friends. They need a “people fix” each day!

If your child is an introvert, give them space—a place to be alone and regroup from other people and noise.

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I pray that these words encourage you as you affect the lives of your children, whether one with cancer or a well one. I pray that He will sweep away the fog, give you clarity to view each child, and strength to meet their needs—one step at a time.

Lynda T. Young, MEd, MRE

www.hopeforfamiliesonline.com

The You Are Not Alone book series:

Hope for Families of Children with Cancer

Hope for Families of Children on the Autistic Spectrum

 

Books are online, in bookstores (may need to ask for them), and on ebooks.

Leafwood Publishing.

(Taken from Hope for Families of Children with Cancer, by Lynda T. Young, Leafwood Publishing.)

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The Beginning of our Cancer Journey

Cub black and white schooljpg

Most of us start our day with the idea that it’ll be routine. Most of us don’t expect a cataclysmic, life-altering, devastating event, unless maybe it’s Monday.

October 20, 2014 was a Monday.

I started the day as I do most Mondays – in a rush for work. I kissed my son goodbye (it was his last day of fall break), scrambled to find my keys, and forgot my lunch. Like I said, routine.

Later that morning, I called the pediatrician’s office to schedule a follow up. Cub, my 5 (almost 6) year old son, had just finished a course of antibiotics for pneumonia, and the doctor had thought he heard a heart murmur. Hence, the follow up.

Receptionist: “Oh, it looks like we have an opening at 1:45. Will that work for you?”

Me: “That’s perfect!”

Off work early on a Monday, spending the afternoon with my little boy – a nice break from the mundane.

We didn’t have to wait long to see the doctor – just long enough for Cub to enjoy the fish tank. The doctor said Cub’s lungs sounded clear, and there was no hint of a heart murmur. It must have been caused by the pneumonia and had faded away.

The doctor and I shared a bit of small talk as he typed in the computer.

Me: “So, last Friday at parent/teacher conference, Cub’s teacher mentioned that she and some of the ladies at the school thought that Cub was looking a little more pale than usual. What do you think of that?”

Doctor: “Hmmm…well, let’s see.”

He proceeded to examine Cub’s eyes, palpate his neck and stomach, and look at the palms of his hands.

Doctor: “You know, he does look a bit pale, but the whites of his eyes don’t look yellow, so I don’t think he’s jaundiced. Let’s just do a blood test and check it out.”

We walked down to the lab where they did a finger stick, and we were told to go on home. They’d have the results later that afternoon and would give me a call.

Fifteen minutes later, Cub and I were in the Sonic drive-through. I was buying him a slush – green apple – for being good at the appointment, when the doctor’s office called.

Receptionist: “Mrs. Robertson? Are you still in town? We’d like you to come back to the office. There was something in Cub’s lab work, and the doctor wants to do more tests.”

It wasn’t what she said that made my heart beat faster. It was how she said it – something in her tone. A depth of compassion that felt out of place.

I told her we’d turn around and be back in fifteen minutes. I called my husband and told him to meet us there. I willed the ice that was snaking through my veins to back off and focused on my breathing while stealing glimpses of my son in the rearview mirror. He slurped his green slush and played with his straw – oblivious to the fear building in my heart. I tried to soak him in – to surround his little self with all of my mother’s love, to protect him from something for which I didn’t yet have a name.

Thirty minutes later, Cub was being admitted to the hospital for further testing. His pediatrician had told me that Cub’s counts were exceptionally low – so low, in fact, that if an adult had those numbers, he wouldn’t be able to get out of bed. The doctor was kind, politely hedging around the elephant in the room. But, because of my mom’s recent battle with leukemia, all the terms rang familiar. Too, too familiar.

I stepped up close to the doctor, and asked, “Do you think it’s leukemia?” He said, “With his counts, that would be a very real concern.”

The next few hours felt like a dream sequence. A part of me holding onto the vague possibility of a virus, but nothing could push away the very real probability of a cancer diagnosis.

I was able to make a few phone calls. I helped the nurses hold down my son while they put an IV in his ankle. I tried to explain why we couldn’t go home just yet. I smiled and ordered him macaroni and cheese from the cafeteria.

Around 10pm that night, the hematologist took me and my husband to an empty room where she had set up three chairs. A very gracious woman, she explained some of the tests they had done, and a little bit about the functions of various blood cells. Then she told us she believed Cub has Leukemia.

I heard her words, delivered with compassion and professionalism, though I tried desperately to reason against what my heart already knew to be true.

Childhood Leukemia. Probably ALL (Acute Lymphoblastic Leukemia). Over a 90% survival rate. It’s the most common childhood cancer, and he has good odds.

Good odds. Good odds? I hate that term. It makes me feel like I’m betting on a horse.

I wish I could say that I was that person who knew from the very beginning that everything would be alright. That I knew God would heal him. That we had nothing to fear. But, no. I wasn’t, and I’m not.

No. In those first few heaving moments, my raw, primal terror was louder than my faith. I have lived enough to know that we don’t always win. Win. How could I guarantee that 90% win? My mother’s heart went into an adrenalin-fueled panic. Cub has to be in that 90%.

My husband and I sobbed while the doctor sat and held our hands. We sobbed while she prayed over us and our son. We sobbed while she waited for us to catch our breath.

Then, we talked. “We will have to transfer him tomorrow. You have three options for where to start treatment. Barnes, Kansas City, or St. Jude. We are a St. Jude affiliate, so if you go there, you can do some of your treatment here. But, the choice is yours. I’m not trying to sway you one way or another.”

I looked at her, putting my hand on her knee. “If this was your son, where would he be tomorrow?”

She smiled. “There’s no doubt – St. Jude.”

I sat up, shared a knowing look with my husband and nodded my head. “Then Cub is going to St. Jude’s.”

I waited until Cub fell asleep to run home and pack a bag. It was midnight, and I had no idea how to pack.

My oldest brother drove an hour and a half in the wee hours of the morning to spend the last few hours with us before the ambulance took us to Memphis. When I called him to tell him, the words barely came. Leukemia. Saying the word in relation to my son was like rolling rocks around in my mouth. Awkward. Foreign. Painful.

After a nearly 5 hour, non-stop ambulance ride, we arrived in Memphis around noon. I never saw the outside of the hospital as I was riding in back with Cub, but once I stepped from the ambulance into the breezeway, I was swarmed with kindness.

We were quickly moved from a holding room to Cub’s room on the pediatric leukemia ward. That first day was a blur of doctors, nurses, social workers, a chaplain, child-life specialists, a dietician, and many, many tests. Who knew a little five year old boy could be so brave?

At some point later that evening, one of the nurses lovingly kicked me out. “Go get some coffee,” she said.

I wandered around a bit, unusually disoriented from having no points of reference. I foraged something to drink and some peanut butter crackers that I ended up not eating. I went into the little parent’s room adjacent to Cub’s room, where my little bag was sitting on a pull out bed that I ended up never using. I realized that I hadn’t brushed my hair since sometime yesterday afternoon, and I had probably better set myself to rights. I grabbed my makeup bag and headed into the bathroom.

There was no mirror. None.

At first I was confused. Was it hidden somewhere? On the back of the door, perhaps? Nope.

Then, I was a little agitated.

Then, I was grateful.

I didn’t see what I expected to see. I couldn’t see the bedraggled, exhausted mother spent from her own desperation. I couldn’t see the traces of mascara that my tears had left behind or the little-girl-lost expression in my brown eyes rimmed with red.

Instead, I could see what I wanted to see. I could see what I wanted Cub to see. And, I realized while standing there in front of a blank wall, that this situation does not have to define us. Cub and I don’t have to fall into any preconceived ideas of what a mother and son “doing cancer” are supposed to be like. I didn’t have to be the mom I expected to see. I could be the mom I wanted to be.

So, I blindly combed my hair and tucked it into a clip. I washed my face, put some Burt’s Bees on my lips, and threw on a smile for Cub. I decided I get to be the mommy I want to be, and the mommy Cub deserves, not the mommy cancer says I have to be.

We’re doing this together, and Cub gets his mommy every. step. of. the. way. Not some washed out, hollowed reflection of her. He needs all of her, and that’s what he’s going to get.

I couldn’t help but wonder if someone knew what we mothers would think on our first night, standing in front of a mirror. And, maybe that’s why there wasn’t one on that bathroom wall.