Category: Childhood Cancer Stories 2014

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Ellen Eggenberger

There was one point in “our” (I say that selfishly) journey that Samantha was grateful for her illness. She got presents, got to meet some famous people, and met some amazing brain tumor families at a place called Camp Sunshine in Maine. We shaved with the 46 Mommas and were on the SU2C show in 2010.

Finally, we were with people who understood. She had kids she could talk to. They invented texting! She talked to her friends whenever she wanted. We went into debt, over and over again, to visit these friends. I did anything I could to make her feel better. Camp saved us.

School was a struggle. I always pushed her to go. Looking back on it, that was my wanting her to be “normal.”  There was always a lot of pressure from school as well. We got reported to the truant officer at one point. She loved going to school and pushed herself as well, but she just couldn’t do it. When she entered high school, we ended up moving to a district that could work with us. In what would have been her senior year, she took her GED and did amazingly well.

She is my hero.

Her typical day is spent on a computer. She can’t concentrate enough to read books anymore. She was an amazing writer. Her cognitive skills have deteriorated to the point that she can’t write. This has devastated her. Her love of life is gone. She has good moments, but they are farther and farther apart.

I can’t describe how difficult it is to watch your child disappear in front of you, while she is sitting next to you. Years ago, during a particularly bad period of shunt revisions, she said to me, “Mom you be optimistic, I’ll be realistic.”

Samantha, I love you so much.

I will be optimistic that someday something will help you.  I will be optimistic that you can get your life back.  I will be optimistic that we can figure out how a brain tumor that exploded in your brain eleven years ago and could do so much damage is still something that can be fixed.

Someday our realistic and optimistic will be the same. I just know it.

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Eleanor Ewoldt

I’m a cancer mom.

There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.

But what does that mean to me? Just this…

It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.

It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.

It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.

It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.

It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.

It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.

It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.

It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.

It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.

It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.

It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.

It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.

It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.

It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.

It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.

It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.

It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.

It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.

It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.

It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.

This is what it means for me.

I’m a cancer mom.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Anne Won

It has been quite a journey for our family from the day our daughter Ella Joy was diagnosed with stage 4 non-Hodgkins cancer on October 8, 2013. She immediately started treatment and when the results from her enlarged lymph nodes came in, we realized that they were not under 1cm where they needed to be.

Soon after, we were told she had a significant amount of cancer in her bone marrow and would be needing a bone marrow/stem cell transplant. I could not sleep for 3 days thinking about the low 30% likelihood that she would be able to survive this transplant. On that third day, we found out that Lurie’s Children’s Hospital of Chicago sent a dot graph to Seattle and the lymphoma expert there declared a case of a possible false positive MRD.

Since it was only a dot graph, we needed to do a new bone marrow extraction to be sent to both Seattle and Lurie’s. We had to wait a few weeks because Ella Joy’s ANC (absolute neutrophil count — a measurement of how functional the immune system is) was too low for the bone marrow extraction. When she finally got to do it, we found out it truly was a false positive! Praise the Lord! Ella Joy did not need a bone marrow/stem cell transplant after all! We were so incredibly thankful to God, and even though we had a lot of unanswered questions, we accepted this as an amazing miracle from our Lord!

We are still going through treatment in the maintenance phase of chemotherapy and will continue even into the year 2016. One thing that has been so phenomenal for our family is the prayer support we have received from so many people! We believe in the power of prayer and a loving, faithful, and sovereign God who hears these prayers! Time and time again, we remember markers of His faithfulness and the indescribable ways He has answered each and every single prayer we blogged about from the beginning of Ella Joy’s fight against cancer.

One concern I had was finding help to watch Ella Joy’s brother when she was undergoing procedures and chemotherapy treatment at the hospital. There was even a long period of time that siblings were not able to even be in the hospital. God provided each and every single time wonderful people to help watch Asaph! Another concern was driving to the hospital in downtown Chicago. The first morning I drove in rush hour traffic, I was 3 hours late for my appointment! God once again answered this prayer by providing fantastic people who were willing to help us with rides every single week! Also, we were able to stay at the Ronald McDonald House many times when Ella Joy had chemotherapy treatments and procedures. This allowed our family to stay together, which was so instrumental for us in such a challenging time in our lives.

We would like to take this time to ask you to pray for our daughter Ella Joy. Please pray for zero and negative (zero cancer, negative MRD). Please pray that God would protect her body as she is in kindergarten this year. Even catching the common cold could mean a visit to the ER. Right now her ANC is low and has been for over a month now. She has struggled with sweating through naps, leg pains (to the point where she could not walk for periods of time), stomach pains, and possible enlarged lymph nodes. With t-cell lymphoblasts, her stage 4 non-Hodgkins lymphoma cancer is aggressive and has a high recurrence of relapse. Please pray with us that God would continue to protect her little body and that she can be cancer-free. My prayer is that she would grow to have an amazing testimony of God’s faithfulness in her life with her battle against cancer so she can be a light to so many and of course to children who are also battling cancer.

You can read our blog and follow Ella Joy’s treatment HERE.  Please lift up prayers with us for our Ella Joy! Thank you and God bless!

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” – 1 Thessalonians 5:16-18