Posts Tagged ‘ leukemia ’

Caring for a Child With Leukemia

Monday, September 15th, 2014

We continue to bring attention to Childhood Cancer Awareness month with another story from a parent who has been affected. (Last week we featured a post from Stefani Healey, the mother of Brooke, who died of a rare form of brain cancer last September.) This post comes from Deborah Schwartz, whose son Eli is currently being treated for leukemia. We’re happy to say that Eli is feeling well and just started second grade, though he will continue to be treated twice a month until the summer of 2016.

It was February 8, 2013, but it feels like yesterday. I was leaving the supermarket at 10:30 a.m. when a call came in from my son’s school. It was already snowing hard as I got in my car; the Northeast was bracing for a blizzard.

The school nurse called to let to me know that my 5-year old son Eli’s gym teacher noticed his neck was quite swollen, and that I should come get him and bring him to his doctor right away. I drove straight to school with a car full of food and snacks to stock the house for what I thought would be a few fun days playing in the snow and hanging out inside.

When I got to school I found Eli looking somewhat unsure about the concern he was sensing from the school nurse. My heart started to race. His neck looked like a linebacker’s. How could I not have noticed? I called my daughter to the school office and called ahead en route to our pediatrician.

With the snow getting heavier outside, the doctor’s office was quiet. We went immediately into a room and in came the doctor. She looked, felt his neck, did a strep test, asked Eli how he was feeling and then left the room for a minute. She came back in with the senior doctor in the practice, which is never a good sign. The senior doctor examined Eli and a serious look washed over her face. I began to feel the panic set in.

The doctors asked me if I could please come with them into the other room, as the kids waited for a minute. She thought it might be cancer. “Excuse me, but what did you say?” A chill went through my body. They called ahead to Yale-New Haven Hospital for us, telling them to expect us within a few hours. I was in a daze, going through the motions, I had no idea what was happening, but off we went.

Now shaking and crying, I tried to pull myself together for just a few minutes, thinking that none of this made any sense, I was just at the grocery store. I collected the kids and called my husband who was in Vermont, already stuck in the blizzard. I called my parents who immediately got in their car. I went home and dropped my daughter at my neighbors, tears pouring out of me: “Can you please watch her while my parents are on their way?”

I packed a little bag of stuff for Eli and myself and got back on the road. With the blizzard in full force the roads were moving, but it was slow and all I wanted was to be there, it’s like time stood still. I looked in my rearview mirror and saw Eli’s unusually swollen neck. I just don’t know how I did not notice–my own child, right in front of me, every single day. How can I not have seen it?

We pulled into the children’s ER–they were expecting us. The first doctor came in to check on Eli. Unsure where all of this was going to lead us, we were both nervous and it showed. My heart was breaking as he was poked and prodded by kind, but unfamiliar faces. They started an IV, so that if they needed to take blood from him again he would already be accessed. He was as brave as he could be while entering a world of the unknown, he didn’t like how it felt and neither did I.

While we were waiting for results of the and X-ray and CAT scan, my father, who is a radiologist, finally arrived. Aside from his emotional support, it helped to have him there to make sense of the medical talk.

Eli had Lymphoma, but that was just the beginning. The next step would be a procedure to assess his lymph nodes, and determine whether the final diagnosis would be Leukemia and not Lymphoma. The blizzard was in full force and we’d have to wait a few days to get the answers we so desperately needed.

That night we were admitted to the hospital. While Eli was in bed, I paced the hallways in a fog. They were an unknown maze of colors and doors; the faces, sounds and smells were unfamiliar. How did we get here? We were supposed to be home sleeping peacefully in our own beds. But we weren’t, and wouldn’t be for quite some time.

The next few days of rounds with doctors, fellows, residents, nurses, a social worker and childcare were a blur. I barely slept or ate. I sat on the floor of the hallways at 2 a.m. and wept. I called close friends and family and started to fill them in on what little we knew.

We were finally able to go home for a couple of days only to turn back around when we found out that it was in fact Leukemia, officially called T-cell Acute Lymphoblastic Leukemia, which was in 37% of Eli’s bone marrow.

As a parent, I have always felt that it was my job to protect my children, and that if we watch out for them, take care of them, teach them to be good people, it would just all work out. Cancer wasn’t in the plan (not that it ever is). I was unsure I was strong enough to handle it not just for myself, but also for Eli and my family.

We took our place at the starting line of treatment, which included chemotherapy, six to eight months of active treatment with bi-weekly visits, followed by two to three years of maintenance and twice monthly treatments and checkups.

Anyone with a loved one who has gone through chemo knows that it is just horrible. Eli went through numerous additional procedures, which included him getting a port, or “button,” that will remain in his body for the next few years. The doctors went through the list of side affects, and for the most part, the experience turned out to be as awful as they warned.

We stayed in the hospital for 10 days to get everything started. I wanted to spare him the pain, but also wished for it to all move faster, to know he was further away from the disease and closer to having a normal life again, whatever that means.

I would not leave his side for as much as people tried to get me to. I walked the halls in the late hours of the night worrying about what this all meant to him and to all of us.

And so our travels back and forth to Yale began. A 45-minute drive that felt torturous. Eli hated going and was terrified when they had to access his button. He screamed and cried. He threw up a lot. I kept towels and wipes everywhere. He was tired. We were all tired. The doctors tried to manage his nausea with more drugs. The names of drugs I learned in the first month made my head spin: Peg Asparaginase, Vincristine, Bactrim, Zofran, and the list goes on.

After the first month of induction they tested Eli’s bone marrow again. This would determine the course of the next phase of treatment. The drugs did their first great job and he was put in the low risk category and would not need a bone marrow transplant or radiation. I think it was the first time I was able to breathe.

Doctors suggested we enter a study for a drug called Methotrexate. It was a randomized study and Eli ended up being in the group where he would get a high dosage of the drug, while staying in-patient for four days at a time for four cycles.

There’s so much to take in and so many decisions to be made. I’d always researched every single thing that had to do with my kids–looked at food labels, checked for recalls on toys–but here I was determining the fate of my child’s life with no firsthand information, and no way to know I was making the right decisions. We had no option but to release ourselves and take comfort in the incredible care of one of the best hospitals in the country.

The first few months sucked. There’s no other way to put it. It was winter and we were inside a lot. He felt like crap and it made me sad all day and all night. When he was awake I would lie next to him with my hand on his head, since that is the only thing that comforted him. When he was sleeping, I watched him sleep. Making sure he was breathing okay and feeling peaceful.

After the first couple of months, Eli started to get headaches and the doctors decided to do a MRI and then an MRV (of the veins) and noticed a small clot in a vein in his head. Apparently it was one of the potential side effects of the chemo. From that day forward I had to learn how to give him shots twice a day. I gave him approximately 550 shots and it was always a struggle. His arms and legs were constantly black and blue. He lost weight and gained weight. He grew 2 inches over the year. Yet every single day I wonder “how did this happen and how did we get through what we got through so far?” I’m still not entirely clear on the answer.

Usually an avid reader, I could barely concentrate on anything. So when I couldn’t sleep at night I plowed through all of the episodes of Breaking Bad, Weeds, Orange is the New Black, Homeland, and House of Cards. It was the only way I could escape what was going on in my head. I didn’t exercise, I didn’t eat as well as I should have, I didn’t get out, I just couldn’t focus on me. This is probably not what I should have done, but my head was not there.

The only thing that mattered was Eli and his big sister Charlie. She was also feeling the affects of this. She was as brave and strong as she could be. She knew her brother was sick and weak, but she also saw him getting a lot of attention. I showered her with as much as I could give. The school psychologist developed a close relationship with her providing her with a safe place to talk and let out her feelings. I was grateful, since the juggle and struggle with it all was mind-bending.

From day one friends, family and the community rallied around us. Close friends started a bi-weekly meal train and grocery shopping for us. Every week meals came and the love came with it into our home. There were weeks that would go by where we could not get out of the house for fear of Eli’s immune system being exposed to germs.

A text, a call, a hug, a cup of coffee, a warm scarf, a manicure gift card, flowers to cheer up the house, food, Legos (which became his new obsession being cooped up in the house), financial support, and just incredible love is what is getting me through this. With everything big and small that people did for us, the incredible kindness and thoughtfulness overwhelmed me. People who didn’t know us appeared in so many ways, and still do.

The intensity of our lives has been heightened. Relationships have been tested. My husband and I have been feeling the pressure, but there’s no time for drama when you are trying to save your child’s life.

At the beginning of this journey, a friend in the community introduced me to a woman whose daughter had something similar to Eli, and who was also at Yale. She was there for me in every way possible. Her mantra, which I have since adopted, is “forward march.” There is no other way. There are no shortcuts, no quick fixes.

No one ever imagines having to go through something like this with your child. We go back to Yale twice monthly now. It’s become our new normal. Eli lets the doctors check him out, mostly now with a smile since he knows there are games there to play, books to choose from, and amazing people to talk to and play with.

Eli is the bravest boy I know, and I watch him with wonder every day. I am trying to take his lead and be as strong as he is. Some days it works and others it doesn’t. I love to see him smile and laugh and even scream and stomp his feet. He may not remember all of this, and that’s more than okay. I will bear the burden of remembering it, and one day that will be okay too.

Forward march.

 

This post originally appeared on WomenYouShouldKnow.net.

Image: Stop Childhood Cancer sign via Shutterstock

One Family's Experience with Childhood Cancer
One Family's Experience with Childhood Cancer
One Family's Experience with Childhood Cancer

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How My Friend Rallied Against the Empire State Building for His Cancer-Stricken Daughter

Wednesday, August 20th, 2014

Joe DeProspero has two sons and a wife, and he is complimentary birth control for anyone who sits near him in a restaurant. His writing has been described as “outrageous,” “painfully real,” and “downright humiliating.” Author of the dark comedy fiction novel “The Boy in the Wrinkled Shirt,” Joe is also writing a parenting humor book. He will be posting twice monthly and his previous posts can be found here.  He currently lives in New Jersey and can be found on Facebook and on Twitter @JoeDeProspero.

Most of us, we bring a Barbie doll or a baseball glove home to our kids and we feel like a hero. But I have a friend who puts us all (or at least me) to shame.

In an article I wrote last December, I talk about my friend Matt Kabel and how he and his wife, Nicole, weren’t letting their daughter Sally’s rare form of cancer, known as Infant Mixed Lineage (MLL) ALL Leukemia, spoil Christmas for their family (and specifically for their two sons). Matt and Nicole threw on festive music, dressed up as elves, and did just about everything within their power to create an environment in line with the Christmases they grew up celebrating. And they did it all with smiles on their faces.

However, we’re now in summer’s third trimester, and a new wrinkle has surfaced in the Kabel family’s fight against cancer. Matt became aware that several friends and organizations had formal requests denied to have the Empire State Building “go gold for pediatric cancer.” Going about it another way, Matt posted to the ESB’s Facebook page, politely and respectfully appealing to have them reconsider. His posts, along with Sally’s photos, were promptly deleted, as were other posts made by fellow parents of children with Leukemia. This lit a fire within a community already well versed in fighting for what they love.

“Before this, the Empire State Building was my favorite skyscraper, anywhere,” Matt told me. “It has been a symbol to our family that, when we travel away, is a sign that we have returned home when it pops into view. Now, when I see it, my heart sinks, almost like finding out an athlete you admire is a fraud.”

Refusing to be cast aside, Matt swiftly maneuvered within his social network to capture the attention of Fox News, which quickly ran a story about the injustice. But it didn’t end there.

The story was picked up by the New York Daily News.

And The Huffington Post.

Sally’s mom, Nicole, was interviewed by CBS and a strong flock of supporters showed up on The Today Show.

Famous rapper Tyga made a public plea to ESB to go gold.

This store in Brooklyn showed their support for the cause with this roadside sign…

And to offset ESB’s refusal to illuminate in gold, Coney Island agreed to do just that.

But despite the overwhelming support and iron-clad case that ESB should show the same support for pediatric cancer that they have for the Democratic National Convention, Teenage Mutant Ninja Turtles, and meaningless sports playoff wins, the group that manages the famous structure’s calendar claims (via a recent statement) that there are simply too many different forms of cancer to accommodate all lighting requests, defending their stance by insisting that, by lighting up for “World Cancer Day,” they have effectively covered all forms of the disease. But I believe parents of kids with pediatric cancer would concur that with children, it’s wholeheartedly different. It just is. And if the Empire State Building wants to stand above us as the true “Heart of New York City,” the people in charge of it would have a heart. And pay the same attention to seriously ill children that it has to fictional, nun chuck-wielding turtles and men who throw balls for a living.

What I find saddest about this situation (aside from the sick children themselves) is the fact that the Empire State Building, an inanimate object loved by many, will now forever be viewed in a different light — pardon the pun. The structure itself has done nothing wrong. Yet, as Matt stated, he will never look at the building with the same reverence and awe that he once did. And frankly, that’s a shame. But what isn’t a shame, what isn’t sad at all is that Matt and Nicole (and so many parents like them) are serving as a powerful example of the lengths a parent will go to in order to defend the honor of their child. There is no cash award, no medal to hang around their necks should they succeed. Just the knowledge that their baby girl is being rightfully acknowledged, and that there is compassion in a world too often tainted by injustice. I truly hope that the Empire State Building comes around. And if they don’t, I hope the Kabels and other families dealing with pediatric cancer know that they are loved and supported by many and are not alone in their fight.

Me and my favorite skyscraper, Matt

For more information on the Kabels’ vs. the ESB, check out their Facebook page.

And to become a part of the Sweet Sally Sunshine community and to receive poignant analysis and updates on Sally’s condition, visit her Facebook page.

* Empire State Building photo courtesy of Shutterstock.com

Parenting Style: Positive Parenting
Parenting Style: Positive Parenting
Parenting Style: Positive Parenting

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How a “Perfect” Life Can Include Down Syndrome and Cancer

Monday, March 10th, 2014

In the April issue of Parents, we explore the world of special needs–a world we’re all living in, diagnosis or not, now that children of all abilities are integrated into our communities more than ever. We’ll be covering this topic in many ways over the coming weeks. Today, we hear from a mom named Beth Herrington, who has two 3-year-old daughters with Down syndrome and has a truly remarkable story.

At one point, I thought I had the perfect life. I was married to the perfect man, we had four perfect children, and were looking forward to the birth of our perfect fifth. On July 9, 2010, at 6:37 p.m., I learned what true perfection was. That was the day Chloe Beatrice Herrington was born. (Here’s a recent photo of her.)

Chloe was born with Down syndrome. Her diagnosis at birth took us by surprise, and led us on a journey that few would choose in their lifetime. When Chloe was only 2 weeks old we met a family that had recently adopted a baby girl with Down syndrome from Ukraine. They had adopted the baby through an organization called Reece’s Rainbow. With a little research, I soon discovered the desperate plight of children born with Down syndrome in many foreign countries: Most are put into orphanages at birth and fail to thrive. When they turn 4 years old, they age out of the orphanages and are sent to mental institutions, where they are hopelessly neglected. They never get the chance to know the love of a family.

Chloe’s birth gave us new direction. Our eyes were opened. Loving her expanded our hearts and gave us a special love for children born with disabilities. We knew this child we held in our arms, just like the four who had come before her, was perfect! And we knew in our hearts that our family was not yet complete. After months of soul searching, and scouring the Reece’s Rainbow web site, a picture of a baby girl with Down syndrome caught our eye. Eighteen months later we were on a plane heading to the Ukraine on a rescue mission we called Operation Olivia!

My husband and I spent 7 weeks in the Ukraine bonding with Olivia and finalizing her adoption. While we were there my sister, who was caring for other children, alerted me that Chloe was not feeling well. A checkup with the pediatrician included blood work with concerning results–Chloe had a very low platelet count. The doctor told us that we did not have to rush home, but that as soon as we came back from Ukraine they wanted to do a bone marrow biopsy on Chloe.

We came home with Olivia a few weeks later–fearing the whole time that we were about to jump head-first into a battle that no parent ever wants to fight. Our worst fears were confirmed: Chloe’s bone-marrow biopsy revealed that she had leukemia.

Chloe spent the next nine months in a Kaiser Hospital isolation room fighting to survive Leukemia and very aggressive chemotherapy. And fight she did! Turns out that kids with Down syndrome have awesome cancer fighting genes! (They actually do: There is a genetic mutation found only in children with Down syndrome that increases their risk of developing certain types of leukemia–and crazily enough, that very same mutation is responsible for helping children with Down syndrome respond so well to the cancer-fighting treatment plans! Also, the relapse rate of children with Down syndrome is significantly lower that that of the typical child who has gone through the same treatment.) In May of 2013 she walked out of that hospital cancer-free; this is what she looked like during treatment.

Early on my journey as Chloe’s mom, I connected with a blogger/photographer and fellow Down syndrome mom named Kelle Hampton. We became Facebook and Instagram friends and she was a great source of love and support for me during Chloe’s cancer journey. Last year on her blog, Enjoying the Small Things, she shared a project she was working on with the Infantino and Step2 companies, which make toys and products for babies and young children. They were planning a photo shoot to promote their products and asked parents to write an essay about how their child has taught them to look beyond a disability. What sparked my interest was that they were looking specifically for child models with special needs. The campaign was called “Everybody Plays” and Kelle Hampton was going to be the photographer. I wrote a quick essay about Chloe, how she inspired us to adopt her sister Olivia, and how, through her fierce battle with leukemia, she inspired thousands across the world to live their lives to the fullest. I attached a photo and hit Send.

A few months later I received a phone call from Kelle and a representative from both companies informing me that Chloe was among the 50 children selected to participate in the photo shoot–and as the grand-prize winner, we were flown to San Diego for a two-day, all-expenses-paid trip. We met Kelle and representatives from Infantino and Step2 companies. During our two days there we were moved by the beauty surrounding the event and the stories behind every child there. I’m sure I can speak for all parents there when I say the experience was one that will never be forgotten. For two days we laughed, cried, and spent hours watching our children just be children. There were no stares, no stereotypes, and no disabilities. There were just children in their perfect ways teaching all of us how EVERYBODY PLAYS!

Today both Chloe and Olivia are happy, healthy 3-year-olds. They are attending preschool and continue to thrive. Every day they amaze us with their abilities. Every day they make us smile. And every day they make us aware that true perfection dwells in them.

Over the last 2 years, through both our adoption and cancer journeys we have experienced an outpouring of love and support from family, friends, our local Down syndrome community, and from strangers far and wide. Thank you all from the bottom of our hearts. And thank you, Chloe and Olivia, for showing us how really perfect life can be.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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