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The Captain of a Rudderless Ship

Imagine yourself on the trip of a lifetime. You’ve taken to the high seas with an optimistic spirit, seafaring experience, and proper equipment. The boat underneath is a worthy vessel and the heading is secure. While the ocean is powerful and at times unpredictable, as captain, you carry with you the confidence to see the journey to its end.

But suddenly, dark clouds appear on the horizon and bring with them rising swells. Massive waves crash over the bow, one after another, as the violent storm turns the ocean from tranquil to cruel. Guided only by experience and bravado, you hold on until the storm around you subsides. When it is finally gone, a quick survey reveals massive damage to the ship – a broken mast and shattered rudder, leaving you adrift in the vast ocean you formerly thought was a friend.

How do you steer a rudderless ship?

While this story may sound fantastic, it is a picture lived out in families around the country. Our captain is the father whose comfortable ship has been rocked by the words, “your child has cancer.” That storm comes in suddenly and leaves devastation in its wake and the captain is left to try to steer his broken ship through uncharted waters. It is an impossible voyage.

Of course, all families and situations are different. But in a typical scenario, mom is consumed with the child’s treatment and the father must carry out his normal duties along with new chores she cannot manage – all while dealing with a huge rush of emotions the likes of which he has never experienced. Consider the balls a dad in treatment is forced to juggle:

Work – Of course he had to work before, but the stress of watching your child endure cancer treatment can weaken the best of employees. Concentration is nearly impossible when the mind is constantly drawn back to his sick child. Regardless of how he feels about his job, he has to persevere because insurance is a critical need during this medical storm.

Siblings – Dad must now make sure the other children don’t feel neglected.

  • With mom occupied, he becomes the taxi driver for activities. If he never respected his wife’s ability to keep a schedule, he will never doubt it again after a few weeks of t-ball, piano, and ballet.
  • He must brush up on algebra and sentence diagrams because the homework mantle has been passed.
  • Food – kids eat a ton of it and often. Perhaps friends are bringing dinner, but lunchboxes must be packed so food must be bought and prepared.

Housework – Whatever the division of duties before cancer, dad’s role will probably increase with mom away. Some cancers mandate a near sterile environment to prevent infection when the patient is at home so the job of cleaning becomes even more of a challenge.

Finances – Family life is expensive on its own. Huge medical and related expenses can easily destroy any comfortable safety net.

Marriage – Maintaining a healthy marriage is difficult in the best of circumstances. Add the pressure of separation, financial strain, stress, lack of intimacy, and fear for the health of your child and you have a recipe for marital disaster.

PatientA father is left questioning how best to support and encourage his sick child. Maybe he was that funny dad before, but there is little to laugh about during treatment. Whatever role he played, cancer will force him to modify it in some way.

With all of these in the air, some balls must hit the floor. The balls that often slip are friendships, fitness, hobbies, and activities because there simply isn’t room for them. If these are important, guilt over their neglect can creep into the dad’s mind.

And here is the strangest part – amidst the uncertainty of this storm, our once-confident captain will experience waves of emotion he has likely suppressed or managed all of his adult life. Tears previously unfamiliar to him will become his constant companion. Unmanageable fear and dread can hit at any time because the cancer has taken away that once-certain path and threatens one of his crew – a crew member entrusted to him… the dad… the man. The startling feeling of spinning completely out of control can rock the strongest of men.

I speak from experience as I have been in that boat. When my daughter was diagnosed with Ewing’s sarcoma, I thought I could safely steer my ship. Cancer was the wind that tossed my little rudderless ship at its whim and every time I confidently charted a course through the storm, cancer blew my plans aside. Losing control of your life and family is incredibly hard for a man – it was hard for me. It ran counter-intuitive to everything I grew up believing my role as the father of a family should be. Also foreign was the number of tears I cried. Right or wrong, I felt like less of a man.

On this Father’s Day, if you know someone who is trying to lead his family through childhood cancer or another family storm, understand that he isn’t as strong as he might appear. He is likely feeling much like I did – out of control and like less of a man. As much as you would want to, you cannot take the wheel and steer for a while – that job is his alone. But you can listen, give him a hug, volunteer for the extra work project, mow his lawn, or take his other kids to a ballgame. By easing those burdens, maybe you can help him regain some measure of control as he rides out the wind and choppy seas.

 

Collecting Memories

I love memories. When asked as a child what my favorite hobby was, I would always reply, “Collecting memories.” It isn’t just about the clicks, snips, and glue to make a photo album or scrapbook. It is about the exhilarating feeling when a memory is ignited by one of the five senses. Remembering sweeps the mind into a swirling whirlwind of titillating yet surreal emotions.

Mother’s Day sends my head reeling and my heart yearning. There are different stories I could focus on for this Mother’s Day reflection. I could reflect on how I spent my first Mother’s Day in a closet with Bo because of a tornado threat (funny story, actually). Or I could reflect upon the warmhearted welcome home Mother’s Day of 2010… the comforting feeling of finally coming home with Bo after a lengthy 8-month hospital stay. Or I could reflect upon my internal confliction of emotions I felt on my first Mother’s Day after Bo’s passing, which is also the day I found out I was pregnant with his sister, Heidi.

Although I never want these memories to fade or evade me, I do not wish to focus on them. And although reminiscing reminds me of what I’ve been through, my heart will only continue to heal as I move forward and live in the now – enveloped by both commemorative and present love. So for this Mother’s Day, I’d like to draw my attention to the very person who shaped me as the mother I am today. She is my rock; she is my pillar of strength; she is Catherine Matthews, my mother. She sacrifices her days, nights, weekends, finances, and even her own well-being for my own. She spent many sleepless nights before and after work to travel every single day to the hospital to visit Bo and me and to make sure our needs were met.

I try to put myself in my mother’s shoes. My mother watched as her daughter went through a heartbreaking and unimaginable tragedy… and there was nothing she could do to protect her little girl. My mother not only lost her grandchild but also saw her daughter’s heart breaking into pieces. As a mother myself, I look at my own daughter and imagine the pain. Recently, doctors discovered that my mom has a brain aneurysm and I find myself remembering all too well how each day we take for granted our mortality.

From my home to yours on this Mother’s Day, I encourage everyone to remember that we are not guaranteed tomorrow. Surround yourselves with those you love and collect memories.

Happy Mother’s Day,

Britney

 

Chosen To Be A Mom

For years, I thought I’d never celebrate Mother’s Day… not because I couldn’t have children, but because I didn’t want to have children. Don’t get me wrong… I thought having a family was a great idea, just not for me. I just didn’t think I’d be a good mom. My husband and I at the time were on the same page… shook on it if you will. (Wink, wink)

But after 6 years of marriage and a move to Roswell, something changed. Now for those of you that don’t believe in some sort of higher power you may wanna check out here. It’s okay, it won’t hurt my feelings. But for those of you that do, continue on.

We were just getting settled in our new life and things were going great… until. I remember the day clearly, I had this crazy feeling that I wanted to have a baby. WHAT?!?!? NO WAY!!! Must have been something I ate. But it wouldn’t leave, it just continued to stay, and honestly nag at me. Of course, I didn’t tell anyone, especially my husband, he’d freak. If I’m being truthful I was freaking out. This can’t be real. Where’d this come from? So I sat on it for a while – weeks, actually months. If I don’t talk about it, it isn’t true. Right??? But after weeks of staying silent, I finally mustered up the courage to speak. To say it out loud. You can imagine how smooth it went over with my husband – think super-crunchy peanut butter!! His immediate response was the same as mine, “NO WAY. We had a deal, no kids.” Told ya, smooth as silk.

We didn’t speak of it again. But the feeling was still there and it wasn’t leaving. Three months passed and we are at dinner celebrating what I thought was a sale he’d closed. You can imagine how shocked I was when a little blue box was placed in front of me.

“What’s this?”

“It’s for you.”

I opened it, because, duh, what girl doesn’t want something in a little blue box? There it was, the bracelet I’d been wanting! I grabbed it and tried to put it on, but when I did, I noticed something was engraved on the back of the disk. Let’s have a baby! I froze. What? Are you serious? Does this really say that? After months and months of silence! This part is a little foggy because I was so excited I’m not sure what I said. But I do remember the feelings! I was so elated! We’re gonna have a baby! I’m gonna be a mommy!

We left the restaurant and I immediately called my mom. I told her we were gonna have a baby. She thought I was pregnant. Probably should have worded it differently. But I think that telling her we were going to try was a gift. She thought that day was never coming. I am an only child, so her chances of being a grandmother were slim before that day. It took us 10 months to conceive, and the rest is history. It happened, I became a mom. Something I never thought I’d be. If you’re reading this, you probably already know that Creed was born 3 months early and that he spent the first 91 days of his life in the NICU. You know that his entire life he fought numerous illnesses, that he was tube fed until he was 2. I could go on and on with all the things he overcame. To say that motherhood took it easy on me who be a big ol’ lie. But I loved every tough minute of it. Every one.

But did you know that I was chosen to be his mom? That it wasn’t by chance that that sweet baby was placed inside me. That tugging inside my heart was from God. He wanted me to be Creed’s mom. Me! The one who doubted that she’d be a good mom. Me! The one who said no to having kids. Me! Some days I have to remind myself that I am still a mom. Losing him 5 years ago was the worst day of my life and nothing will ever compare. Having that ripped from my hands so quickly. But I am still a mom. I am still HIS mom. No, you won’t know that on Sunday when I walk in the restaurant to celebrate without him. And you won’t wish me a happy Mother’s Day because you can’t see him with me. 

It’s okay, because 12 years ago on December 3, I did become a mom and nothing can ever change that!

As we approach Mother’s Day, if you are like me and lost a child – this day is hard, but you are still a mom! You were chosen to be the mother to all of your children. It wasn’t by chance… at least not for me. (Wink, wink)

Happy Mother’s Day to all of you,

Creed’s Mom

Mother’s Day is Never the Same

“It is not the years in your life but the life in your years that counts.”

                    –  Adlai E. Stevenson

Friends,

Mother’s Day is bittersweet for me. After a mother loses a child, Mother’s Day is never the same. A way to cope is not to dwell on my losses to avoid sadness; instead I remind myself of the many blessings with my family and friends.

We are grateful for the time we had with Sam. He touched so many people we are touched when people share their memories of Sam. Sam’s ability to connect with people became a catalyst for our family to have Sam’s Fund within CURE. We believe in CURE’s mission vision that childhood cancer be cured within our lifetime.

I am confident Sam’s is smiling down to see a dedicated doctor, Dr. Jim Felker as our Sam Robb Fellow. Sam had a special relationship with his doctor, Dr. George. Unfortunately, doctors caring for children with cancer continued  to be stymied in their efforts. Consider two alarming facts on treatments for children with cancer:

  • Fewer than 5 drugs have been developed for children with cancer since 1980, compared to hundreds of drugs developed specifically for adults
  • For many childhood cancers, the same treatments from the 1970’s continue with no changes or improvements.

We know personally the sad reality of not having an option for treatment. Working with CURE we are committed to finding new treatments for children battling cancer. We are blessed to have the friends who volunteer/contribute to Sam’s Fund. It is time to bring treatments for children with cancer into the 21st century. Thank you for being a friend and a blessing!

 

Mother’s Days Blessings to all!

Annamarie

Save the Dates

Sam Robb Memorial Golf Tournament
Sunday, October 8th at Legacy Golf at Lanier Islands

Sam Robb Memorial Holiday Classic Basketball Tournament
December 27th -28th -29th

Sam Robb Brewfest for CURE
SweetWater Brewery
March 3, 2018

Make Memories and Celebrate!

Sweet Friends,

Mother’s Day is here. As to be expected, this day is hard for this mama’s heart to bear. How do you say that you are still angry that your daughter isn’t here with you and that your heart is shattered into a million pieces without coming off as rude? The truth is, you really can’t. And this is just one of the many things that childhood cancer can do to a person. It takes so much from them and they will spend an eternity trying to make sense of it all while saying “I’m sorry” to those who come in the path of their rollercoaster of emotions. But there is one thing that childhood cancer cannot take from me, and that is the fact that I am still, and always will be Alexa’s mom. I was chosen to fiercely love and protect her and to take care of her throughout her life. What an incredible gift that has been! I watched as she fought back against a relentless brain tumor and never once let it steal her joy. I witnessed her incredibly big heart, that was so full of kindness and compassion, bring our community together in the name of raising money for life saving childhood cancer research.  My little girl’s roar was loud, and although her time with us was fleeting, she left her mark on this world in a big way! Every smile, tear, milestone, and setback is something that I will cherish forever. And to think that I was responsible for that brave soul is astounding!

Parenting is by far the hardest job that I have ever had, but the rewards make every intense moment worth it. And although childhood cancer took Alexa from our family, we have two beautiful girls who look at pictures and talk about their sister every day. The blessings I have received as a mom are amazing! On this Mother’s Day, take the time to snap those pictures, play those games, and dance until you all fall to the ground. Make those memories and hold those close that give you the greatest joy. Celebrate what you’ve been given, and celebrate YOU!

Happy Mother’s Day!

Katie Wilkin

Alexa’s Mom

Celebrate Mom Warriors

As Mother’s Day approaches, we mothers who have lost angels have many mixed emotions. We feel loss and sadness and some days we just want to curl up in a ball and grieve the child we lost. But at the same time, we have other children who need us to celebrate their lives here on earth.

Mothers are expected to have supernatural strength. Strength to hide tears that are fighting to flow. Strength to put on a happy face when we really want to scream and cry. Strength to get out of bed and face the world when we want to hide in a dark cave. Strength to cook and clean and engage with family when we want to hide away in a far away corner. Strength to keep living when some days dying sounds easier.

Mother’s Day is another day to celebrate mom warriors that sometimes feel like failures, but aren’t. The fact that we wake up, get out of bed and take daily breaths make us winners. We pray all the moms who have lost angels will allow themselves some grace and forgiveness and let others treat them as the heroes that they truly are. Not every day is easy, many days are hard.

Most of us wouldn’t trade this journey for anything in the world. Being a mother is the greatest gift we were ever given. It is our hardest challenge but also the best treasure we will ever know. So we will continue to try and enjoy this day. We will try to reflect on our blessings and hold our other children close. We hope mothers will count their blessings as well and squeeze their children tightly.

If you want to give to our fund to honor our AML warriors and help us fight, so no other mothers have to feel our loss and pain, you may give here.

curechildhoodcancer.org/United/

We are forever grateful,

Mandi, Anna, and Erika

We Celebrate the Joy Our Children Bring

These faces…..  I know and love each and every one of them.  They are all dear friends and I’d love to tell you each of their stories.  I love the joy and love that shines through each of these pictures.  If you’re a mom or dad, I bet you have pictures that don’t look all that different from these.

Each of these pictures is of a mom and their kiddo who is battling or has battled cancer.  Some are still fighting, some have graduated to survivor clinic, and some have run ahead of all of us to Heaven.  If you looked at pictures of these moms and kids on the day before their kiddo was diagnosed with cancer, they wouldn’t have looked much different.  Maybe the kiddo had a little more hair and maybe Mom had a few less worry lines…  But the love was the same.  The joy was the same.  And if you saw a similar picture of the survivors today, they probably wouldn’t look that much different either.  Maybe the kiddo has a little more hair now, maybe there’s a bit more color in his face, and maybe she’s a bit taller…  But the love in those pictures is the same and the joy is too.

The picture of the mom whose child has gone on ahead of her to Heaven would look different though.  It’s missing someone.  That same someone is missing in every part of her life now… missing from every piece of every day (for her, for dad, for siblings, grandparents, aunts, uncles, friends).  There is a bit of sadness in these pictures now, even beneath the smile they show for the camera.  But do you know what is still the same?  The love…  The love that never leaves and stays with us until we see our sweet babies again. And I argue that there can still be joy, albeit bittersweet….  Memories of our kiddos can still bring us joy in the midst of our longing to see and hold and touch them.

So on this Mother’s Day, we celebrate the love that moms have for their babies and that all of our sweet kiddos have for their moms.  We celebrate the joy our children bring.  Healthy, fighting, here, or gone….  we give thanks for the love and the joy that’s there.  Happy Mother’s Day from Catie’s Fund and CURE.

Always Looking Up

As I think ahead towards another Mother’s Day, I always feel a wide range of emotions…first and foremost there’s always joy, gratitude and pride …. We’ve all been blessed to be called on to give the miracle of birth and be a mother – there’s no greater Joy!

My reflection as a mom who also just happens to have a child that has endured and fought Stage IV cancer as we watched and held on to hope, Mother’s Day is a day I always take an extra-long pause.   I am so thankful for both of my boys and that God chose me to be their mother. I’m also thankful for all that we have shared together as a family as Trenton battled stave IV neuroblastoma and what that battle taught us. I know it sounds odd to be thankful for such a battle, but Trenton has taught me so much about being his mom and overcoming the greatest of odds, especially when all odds were against him.  Taylor has taught me to smile even when you’re hurting deep inside and not understanding the world crashing around you.

As a mother with a cancer child, childhood cancer impacts your life forever.  You can’t walk away from it just because your child is healed. You run towards it and fight harder because you do not want another mother to hear the same words you heard and watch such horror on a daily basis.  It’s like Groundhog Day, but each day you wake up to a nightmare of what your child may endure that new day.

So many of the families that I have come to know and love over the years have lost their children to cancer. This is why we started the Trenton W. Kindred Research Fund, so that we can stop this beast taking the lives of the children of tomorrow!

When I think of both of our boys I think of Brave, Endurance and Understanding.  Trenton has been thru 5 rounds of chemo, 21 surgeries, harvested his own cells to then endure 2 bone marrow transplants, 21-days straight of radiation and 6 months of oral chemo, all over a period of 19 months.  He still attends survivorship clinic and liver doctor appointments which consist of multiple blood draws and IV’s and long MRI scans.  There are many times when we can see him wince in pain when he thinks no one is looking, but he doesn’t complain. His IV sticks and blood draws are tough because his veins are so small and collapse because he’s been stuck too many times to count.  But he never complains. He endures. He is Brave and he is Strong and his brother smiles and tries to hope for Understanding.

Speaking of big brother, Taylor….. The siblings always seem to be overlooked thru a journey like this.  Not on purpose, it’s just a given.  Taylor has stayed strong and always has a smile, even if it is to hide the fears and scars of his own. But that is the way of cancer. There is always collateral damage. He endures. He is Brave and he is Strong.

I am an incredibly blessed mother, because my boys offer me maternal wisdom as only a child can do. There is so much I could share as I reflect on Mother’s Day and how our miracle inspires me each day. …to all the moms I’ve been blessed to have in my life as family and many friends, you’ve walked this chapter with me…… I’m so thankful for each of you.  Being a mom is HARD and no mom I know EVER thinks she’s doing a good enough job. I’m just thankful to be a Mother and that God chose me to be this mom of two of the strongest and bravest boys I know!

Always looking up ~ Happy Mother’s Day

 

Thunderstorms give way to Smiles at the 23rd Annual Lauren’s Run and CURE Family Picnic

There was a great deal of uncertainty heading into Lauren’s Run. Thunderstorms were predicted from the moment April 23 hit the 10-day forecast.

Undaunted, we went to our friend, Robert (aka Robert the Great) Hart who predicted a 100% chance of fun. It turns out, Robert was right.

Except for a couple of very brief showers, the rains held off and we got all three runs in with no problem and the times were very competitive. Our men’s and overall winner was James Lewallen with a time of 18:55 and our female winner was Jaclyn Williams at 22:13. The full results can be viewed here. (http://results.active.com/events/lauren-s-run–9)

The sweet tone of Lauren’s Run can be summed up by this picture in which one of our medal winners, Steve Rom, gave his medal and prayers to little Ava, who is fighting rhabdomyosarcoma.

The 2k and Tot Trot were also rousing successes with many of our teams wearing t-shirts to represent their cancer-fighters. Spirit and smiles were evident throughout the day as together we raised nearly $225,000 to fund life-saving pediatric cancer research.

When Lauren’s Run ends, the Cure Annual Picnic begins. With games, inflatables, crafts, music, and superheroes, kids roam the field going excitedly from one fun activity to another. Thanks to our generous food partners: Folks, McAlister’s Deli, Joey D’s, and California Pizza Kitchen, everyone who attends gets a tasty lunch. Although the threat of rain kept some away, the picnic was filled with fun and laughter galore.

Fortunately, the rain didn’t start until the last box was packed away.

You don’t want to miss the 24th Annual Lauren’s Run and CURE Annual Picnic in 2018. We will be announcing the date soon and would love to see you there.

The Bowen Story Lodging Fund

In our continuing effort to meet the needs of patients in treatment for childhood cancer and their families, CURE is thrilled to introduce the Bowen Story Lodging Fund. This fund makes available financial assistance to eligible families who have a need for overnight accommodations due to their child’s cancer treatment. Through a partnership with Hotel Equities, CURE can now offer hotel accommodations for up to five nights for a patient whose travel to and from appointments are a minimum of 100 miles round-trip and for whom other accommodations are not available.

Many families living outside of Metro Atlanta must often travel long distances for treatment. Due to the side effects of chemotherapy, unscheduled and urgent trips resulting in overnight stays are not uncommon. Besides the medical cost of treatment, these travel and lodging expenses can become significant. Bowen’s family experienced this during his treatment.

“During Bo’s cancer battle, lodging became a necessity,” Recalls Bo’s father, Scott. “Living eighty miles away from Children’s Healthcare of Atlanta, there were times we rented an apartment during treatment to save us from driving so much. The Bowen Story Lodging Fund for these families can help when other avenues are full or can’t accommodate the situation. We are proud that Bo’s fund can spread its wings in helping in the lodging area. Living such a distance from treatment, it can truly be a blessing to have a place to stay while there. We’re proud to expand in helping more families.”

We are excited to offer this additional assistance to eligible families as they travel for appointments and treatment. Many thanks to The Bowen Story Fund and Hotel Equities for helping us to meet this need.