“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 8^th at Legacy Golf at Lanier Islands

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

Sam Robb Brewfest for CURE
SweetWater Brewery
March 3, 2018

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

 

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 24^th Annual Lauren’s Run and CURE Annual Picnic in 2018. We will be announcing the date soon and would love to see you there.

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.

Healing Scars Through Counseling

The night before we checked into the hospital for port implant surgery and first round of chemo, our daughter, Mary Tipton, asked if she could sleep in our bed.  Of course.  Absolutely.  Once we were tucked under the covers she turned to me and said, “Mama, I feel like I am too little for this to happen to me.”  She was terrified of what she was about to endure.

This was not a moment we were prepared for.  I had thought about how to help her when she lost a soccer game or if she felt left out at school or how to comfort her when a boy breaks her heart for the first time.  But, this scenario… this is not in the baby books.  It is a parent’s worst nightmare come to life.

The months of treatment took a brutal physical toll on MT.  She lost her hair and her appetite.  The skin on her joints cracked and bled.  The horrible side effects that the oncology team discussed with us happened.  They were listed, plain as day, on the Treatment Consent Forms.  So, at least we had a heads up for the physical damage.  We knew it was coming.

But, the list of potential side effects did not include the emotional trauma.  No mention of PTSD, anxiety and insomnia on the Cisplatin warning labels.  Survivor guilt, depression and crippling fear?  Not on the bags of Bleomycin and Etoposide that were pumped into her little 8 year old body.

How do you comfort a child when she loses her hair?  How does that feel for her?  Why, oh, why do other children make cruel comments to a bald little girl?  And how to help her recover from that?   Does she worry about dying as much as we worry about losing her?  Does she feel panic every time she has an ache or pain?  Will she ever sleep well again?

As much as we tried to find the right words and ways to comfort her, we could see Mary Tipton was struggling with her emotions.  She was withdrawn and reluctant to be around anyone other than family.  I remembered reading about the counseling services provided by CURE and reached out for help.  Mary Tipton was, frankly, not excited at the prospect of going to yet another appointment.

Trying to respect her privacy, we did not ask MT too many questions about her counseling visits.  But, we could sense the relief in her. She had a safe place to talk about cancer and its aftermath.  She could talk to the counselor about how embarrassed she felt when a kid at the swimming pool kept asking her why her head was so white and so bald.  And how she cried the day she rode the school bus home with a friend and the bus driver tried to make her sit on the “boy” side of the bus because of her short hair.

The counselor used play-based therapy methods to draw MT’s fears out into the open.  Our little girl started smiling more and actually looked forward to her counseling days. She began to enjoy all the things she loved to do before cancer.

It is an incredibly difficult transition from the cocoon of cancer treatment back into “normal” life.  There is no normal after childhood cancer, but that is what our daughter yearned for so desperately.  Don’t get me wrong, MT knows she has been given the merciful blessing of survival, but it doesn’t come without its own set of challenges.

So many days she cried that she just wanted to be a normal kid.  Why did cancer have to change everything?  The counseling helped all of us understand how to help Mary Tipton adapt to this new, post-cancer, scanxiety-ridden, amazing gift of life.  Counseling helped MT refocus on the positive and learn to carry on when faced with life outside the shelter of the hospital and constant companionship of her (admittedly) overprotective parents.  There is joy to be had after cancer and counseling helped us find it.

 

Mary Tipton has physical scars from surgeries and treatment.  The scars have faded a bit with time.  The emotional scars, although she will carry them with her always, have begun to heal as well.  We are so grateful to CURE for supporting our family throughout Mary Tipton’s diagnosis, treatment and recovery.  Counseling support is an invaluable gift for families fighting childhood cancer and I encourage parents to reach out to CURE to find out how to get started!

Who Moved the Finish Line?

 

Imagine you are running the longest, hardest race of your life. You have suffered through a great deal of pain and many setbacks along the way, but come to a point where the end of the race is near. Just as you round the last corner and see it in sight, the finish line disappears like a vapor in the wind and you must trudge on. You find yourself wearier than you ever thought possible and doubt your ability to finish, but there is no choice; you have to keep going. Once more, the finish line comes into view and once more it vanishes as you approach. How would you feel? Frustrated? Angry? Confused?

This type of cruelty is common with childhood cancer.

Meet Olivia. At the age of eleven, doctors found a tumor in her right arm that they diagnosed as Ewing’s sarcoma – a rare childhood bone cancer. The treatment for Ewing’s involves several rounds of extremely harsh chemotherapy to shrink the tumor, followed by surgery or radiation to destroy the tumor, and then more chemotherapy to ensure it never returns. This standard protocol hasn’t changed in decades.

Olivia rocked through this challenge. She endured the chemo and said it didn’t even make her very sick. After two surgeries, she finished her last round of chemo in April of 2015 and thought she had crossed the finish line. Little did she know her race wasn’t finished.

The following November, Oliva was on a Junior Youth Assembly trip to the state capital in Atlanta. During this event, she was able to push a bill through a mock congress requesting more funding for childhood cancer research. But shortly before it was over, she developed a rash and began to feel sick. She felt so bad that her father came to pick her up and took her straight to the hospital.

Olivia laid in bed and realized something was very wrong when her parents kept getting pulled out of the room. Soon she was taken to a different hospital by ambulance where she was told that she now had acute myelogenous leukemia (AML).

This secondary cancer is a direct result of the treatment she received to cure her Ewing’s sarcoma. Although it is rare, one of the chemo drugs, Etoposide, is known to sometimes cause the onset of AML. In killing one cancer, Olivia was, in effect, given another. Her finish line moved.

“I can’t do this again,” she told her parents.

Olivia remembers being frightened and angry. But she kept moving. This treatment was much rougher than the first. In fact, everything the doctors gave her sent her body into a downward spiral until they were forced to put her on a ventilator to give her battered body a chance to rest.

She spent thirty-three days on the ventilator – a time her parents remember as very touch and go. Finally, her body began to fight back and she got strong enough to do a bone marrow transplant. To facilitate the transplant, doctors had to suppress her immune system, leaving her vulnerable to any possible germ that could elude the most sterile of environments. She struggled with several maladies during the transplant recovery period and was forced to go to the emergency room three times. As a result of the transplant, Olivia even contracted a virus that is often associated with lymphoma – a disorder that forced her to get another round of chemotherapy.

This circle of madness was frustrating and scary for her and her parents.

“We were so scared, yet again, that now she might have a third cancer and even more scared that the new marrow she was building was going to be destroyed by yet another chemo,” said her father, Matt. “How can this happen to one child – three cancers in three years? It was like our legs were kicked out from underneath us and someone punched us in the gut over and over.”

 

Fortunately, she was never diagnosed with lymphoma and her bone marrow stayed intact and as the immunosuppressant’s were backed off, her new T-cells slowly began producing normal cell levels again.

That was nearly a year ago. Olivia is back in school and doing well. She has finally crossed the finish line. She and her parents know how special that is.

“Each day is a gift,” added Matt. “I am so grateful I can look into her big, beautiful, green eyes and tell her I love her and she tells me the same.”

Olivia’s family credits their faith and the support of their friends and community in Cartersville with carrying them to the finish line of their race against childhood cancer.

 

Many children face the same problems Olivia encountered. The unfortunate reality for childhood cancer survivors is that the side effects of treatment can be long term and devastating. CURE is working to fund research that will bring safer treatments with fewer side effects to children who so desperately need them. Won’t you join us?

Follow Courageous Christopher to Lauren’s Run

At the tender age of three years old, Christopher has been through a lot. In 2014, what seemed like just a lump in his belly was diagnosed as stage IV Wilm’s Tumor. He spent the next seven months in a fight that included chemotherapy, surgery, and radiation. He became a frequent flyer with trips between the Atlanta and New York hospitals where he received treatment in which he lost a kidney, an adrenal gland, and several lymph nodes. But on March 15, 2015, Christopher was declared NED (No Evidence of Disease). He has spent some additional time in the hospital due to asthma, but is now doing great. In fact, after his latest scans, doctors decided to move him to the survivor program where they will monitor his progress annually.

Although the cancer is gone, he bears a large surgery scar on his abdomen along with several scars from ports that will always tell its story.

His family is dedicated to fighting childhood cancer so that someday, other children won’t have to endure the same torturous treatments that were forced on Christopher. One of the ways they do that is through CURE Childhood Cancer’s Lauren’s Run. Money raised at Lauren’s Run is dedicated to funding lifesaving pediatric cancer research and that money is raised by teams such as Team Courageous Christopher.

Christopher’s parents, Franz and Christa, have engaged in several fundraisers in his honor. Last year, their Lauren’s Run team raised over $9000! One of the keys to their success was a personal touch. They made this card and mailed it out to friends and family to tell their story and ask for a gift.

“It’s hard to ask for money,” said Christa. “But in the end, you just have to ask and remember that this is for children and so many are affected.”

She’s right. Statistics tell us that nearly 16,000 children will be diagnosed with cancer this year and nearly 20% of those children will not win their battle. More needs to be done.

Would you join Christopher and his family at Lauren’s Run? More importantly, would you join them in raising money for others to fight the battle? You can either join an existing team or start your own and bring your friends and family into the fight. The day is not just a run, it is a great family experience that culminates in the CURE Annual Picnic where there will be games, inflatables, face-painting, food, and much more.

It is really such a small thing. But the more people who do this small thing, the greater our total effort becomes until we create an avalanche of caring that finally finds a cure for childhood cancer. Your first step in following Christopher starts by clicking here!