Rally for Jake (and all kids fighting cancer)

On November 5th, 2012 our lives were changed forever with the words, “There was no infection present, I’m so sorry”. This came after a biopsy confirmed our 3 year old son Jake had a rare form of cancer called Ewing’s sarcoma. We had never heard those words before, and always brushed pediatric cancer off as cute bald kids holding stuffed animals and balloons.

It wasn't our child….it wasn't our problem.

It became our problem that day, and we realized quickly just how big of a problem this was. It was far from cute bald kids that were holding teddy bears. For the next 10 months our little boy would be exposed to chemo drugs that were developed in the 1950's and 60's, multiple surgeries including an allograft to rebuild his deteriorated left tibia, countless hours of crying and screaming. He spent Christmas of that year in the hospital on a morphine pump for pain, the next Easter in the hospital, and even his 4th birthday. He was given the title “Survivor” and NED on 9/17/2013 as his scans showed him to be cancer free, which has remained the case to this day. It didn't stop our fight though, because cancer tried to take our little boy from us. It made us angry….

How can so many diseases that destroy families and take children receive so little attention from society and our leaders? How can so little be done to help our most vulnerable citizens? Why had a never seen a GOLD ribbon in my life until my son was fighting for his life when this is the number 1 disease killer of children in the United States?!?!??

I am just a dad who loves his family. I can’t cure cancer no matter how smart I may think I am….so what can I do?

I can run…..and I will. I’ll run because 5 hours of pain is absolutely nothing compared to what kids go through everyday in hospitals everywhere. I’ll run because everyday families hear the words we heard, and worse some hear “there’s nothing more we can do”. This isn't acceptable…it must change…..so I’ll run until it does.

Please donate something…anything….for Jake….for so many others….let’s be the change.

CLICK HERE TO DONATE TO RANDY'S RACE

Rally at UGA by Jill Slabacheski

We were asked by Jill Slabacheski, a student and member of Rally at UGA, to do an interview about our family and experiences with cancer and Rally Foundation.   She was creating a campaigns project for one of her classes and decided to do it about the Rally Foundation. For one of the pieces, she wrote a magazine spread showing the heart of the organization. Below is the article she wrote. (We think she did an awesome job!)

  The Russell family was thrown for a loop when they brought Jake in to the
hospital for what they thought was a minor injury but received news that would change their lives forever.
  For about six weeks, Jake had been waking up at night with a sore ankle, which parents Randy and Kait presumed to be “growing pains,” for he was at the susceptible age. On October 11, 2012, a kid on a bicycle hit Jake in the street, and two days later he had whacked his shin on a chair causing him agony. Thinking he might have fractured his tibia when he had fallen two days prior, Randy and Kait took Jake to his pediatrician and she ordered an x-ray.
  When the doctors relayed the news to the family that Jake had Ewings Sarcoma, a rare bone cancer most common for those in their early teen years, the family was at a loss for words.
“I remember looking at Kait and seeing the pain in her eyes and holding her,”
Randy said, “I was completely numb for 24 hours. It seemed like a bad dream that I was sure I would wake up from.” Kait agreed. She recalls thinking, “Oh my God, my baby has cancer. This is really happening – this is not a dream.”
  Being so young, Jake and the other two children, Ethan and Aubrey, did not fully understand the extent of the procedures and everything surrounding the processes in general. They knew Jake was sick and needed to be taken care of, but the ability to grasp the intensity of the matter was unattainable. Kait believes this was more or less a good thing because they did not know that Jake’s life was in danger with every step they took throughout the journey. Ethan, the eldest of the three, was worried about his best friend’s continuous visits to the hospital, but never fully comprehended the need for the revisits.
Ethan, whose main goal throughout the entire process was to keep a smile on Jake’s face, never failed to stay strong.  When asked what his favorite part about being a big brother is, he proudly responded, “Protecting [my] little brother and sister.” After watching the way the three of these children interact, I do not think anyone would disagree with this statement.
  Jake spent the majority of his time receiving treatment and recuperating at
Children’s Healthcare of Atlanta, Egelston, at the Aflac Cancer and Blood Disorders Center. An extensive process calls for an extensive team, and Jake received top of the line care from an amazing group of individuals. Pediatrician Dr. Hutchins-Howard, oncologists Dr. Katzenstein and Dr. Cash, surgeons Dr. Fletcher and Dr. Oskouei, Jake’s favorite nurse Lauren Yeomans, child/life specialist Layne Umberger, and all of the countless other employees of CHOA made Jake’s fight a pleasant one, and never ceased to make the Russell family feel as comfortable as possible.
“I honestly don’t know how they do it, going in and smiling everyday,”
commented Randy, “We never seemed to meet an employee that wasn't in a good mood. I don’t know how you deal with what they do on a daily basis and still smile. They are special people.”
  Devastating events such as a pediatric cancer diagnosis put a family’s strength
and love to the test. The Russell family fought through a heart wrenching
experience that  most families only visit in their worst nightmares. Not only have they become closer, but  also they have learned how important the entire family unit is in crisis situations. As parents, Randy and Kait have learned that life is a precious gift and every day should be enjoyed and spent learning the ropes of life, no matter the road you take to get there. They have become more open to accepting the idea of “what is,” rather than thinking about the “what if’s” in life.
“I have learned that children are much stronger than adults. I learned that I’m a
lot stronger than I thought I was. I learned that cancer itself is very painful and the treatment for it can be almost as bad,” Kait said. “You learn also that it’s okay to hurt, and that it’s okay to let people see that you’re hurt. It’s what makes us human,” Randy added.
  The Russell family continues to take everything that they have learned over the past couple of years and put it in to their daily lives. This year, Ethan is attending Camp Sunshine in Atlanta where he will spend time with children and families that have gone through similar experiences. Campers who have endured the challenges of cancer in their family create a network of support and gain new strength and hope as they learn from one another’s experiences. The Russell’s also have all become strong advocates for the Rally Foundation and Be the Match, spreading awareness of pediatric cancer and sister organizations. Childhood cancer research and awareness is extremely underfunded, which is both alarming and unacceptable. Children and adults are different in terms of
what they can physically endure for medical treatments, and it is imperative that this focus be paid more attention, for it is the leading cause of death for children ages 0-19 in the United States. This is why they Rally.
  Jake had commented on the fact that if he could be any superhero, he would be Superman. Little does he know, he is the true superhero himself after defeating the harshest form of kryptonite imaginable.

Walking along and...Slap!

Kait:
We're moving along in life, enjoying a beautiful day and, believe it or not, the fact that Jake had cancer is fading to the background.  Can it be possible to not think about cancer every second of every day?  Well, apparently it is possible to move forward with everyday tasks and activities.  We can actually go out in public without being stared at with "sad eyes".  Like today for instance, the kids are out of school for President's Day so we slept in, ate breakfast, and played a little.  Jake had a physical therapy appointment at 11am and we grabbed some lunch after at a new Mexican restaurant in town.  It's just me and the three kids since Randy, unfortunately, did not get the day off school.  Our kids are 2, 4, and 6 years old so you can imagine we are like a traveling circus everywhere we go.  Aubrey refused to sit in the highchair so a good compromise was to let her sit next to me in the booth.  To her this means jumping up and down and singing at the top of her lungs.  Jake ordered chicken nuggets...yes, at the Mexican restaurant.  He refuses to touch them and proceeds to eat cheese dip likes its water.  Ethan, the oldest, inhales eats his taco like a good boy.  In the midst of normal conversation, Ethan says, "Well, it's almost time for Jake to go to the hospital again.  The doctor said he has to go back every three months and March will be three months since he's been."  And there cancer goes, slapping me in the face again.  Yes, Jake is due for his six month post treatment scans on March 6, 2014, this is not news to me.  However, it is shocking to me that a six year old would be keeping track of this.  Instead of thinking about the next holiday or birthday he is thinking about his brother having to go to the hospital.  It makes me so mad that cancer keeps rearing its ugly head.  I want to scream, "Get out of our lives!  Get our of our minds!  You are not welcome here."  People tell me that it gets easier as time goes by, but I honestly feel that cancer will always be a part of our lives in one way or another.  I hope that eventually I will not be so emotional about it.  As of now everything I see about childhood cancer brings me to tears.  Doesn't matter if it's good, like a Make-a-Wish being granted or bad, like a child dying.  Everything that has to do with cancer is emotional.  Cancer is so evil, I can actually imagine it having a face with a look of malice.  Always trying to cause pain. 

Anyway, I have to get over the fact that I can't protect my kids from everything.  It's probably best to involve Ethan in Jake's appointments rather than hoping he'll be in ignorant bliss.  Obviously, he knows what's up and he is far from ignorant.  As far as Jake's healing progress, he is doing amazingly well.  We saw his surgeon on 2/4/14 and he was so pleased.  He said that we couldn't ask for better and that Jake is free to do any activities he would like.   He can be an active little boy again!  Jake's tibia has grown enough on both ends that if he were to break a screw or have a complication, the Dr would be able to fix it.  We know that there's a good chance Jake might break something in that leg someday and we are okay with it.  We refuse to limit him - we will never tell him "you can't" when he's been given this second chance at life.  At physical therapy, his wonderful PTs have been working hard to help Jake walk straight and without a limp.  He is gaining strength and is really starting to trust his left leg.  When he walks slowly you wouldn't even know that he had major surgery. 

[Click below to see a video of Jake walking.]

Post by Jake's fight against Ewing's sarcoma.

Randy is going to run his first marathon in March and is raising money in Jake's name for the Rally Foundation for childhood cancer research.  If you have even a dollar to spare, would you consider donating?

https://www.rallyfoundation.org/run/half-marathon-training/publix-georgia-half-marathon-marathon/rally-for-jake-randy-Russell
 

I am very thankful for where we are in life, but, most of the time it is hard to believe that this is our life.  I was thinking the other day that I wish I could go back to when Ethan was a baby so I could know what it felt like to hold him once again.  Then I thought to myself, would I be willing to relive the past year and a half just to experience holding my first born again?  God forgive me, but nothing would be worth going through cancer treatment again.  N.o.t.h.i.n.g. 

I know that there will be times like today where cancer and Jake's journey will jump to the forefront of my mind.  I will accept whatever comes our way, help others as we can, raise awareness for childhood cancer, and thank God every single day that our traveling circus is as noisy as ever. 

Interview clip