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.

Online Shopping & Over due Update

We wanted to share this really cool website with you guys.  It's called Ebates and when you shop through their website you get a percentage of your purchase back.  It's easy, free, and so worth it.  Over the past two years we've gotten over $255 back.  They have a referral program too, and we get rewards when people use ebates through our referral link.  So, if you want to try it, please use this link to sign up:  http://www.ebates.com/rf.do?referrerid=TH3RGIiwI8F2VrnV6HtJVg%3D%3D&eeid=26471

Like I said, it's free and easy, and if you're online shopping already you might as well try it! 

Anyway,  Jake is doing great.  He was officially one year NED (no evidence of disease) in September.  I can't believe we didn't write a post about it!  His x-rays, blood work, and echocardiogram came back normal.  They will continue to check his heart yearly since one of the chemo drugs he received causes serious heart damage. 

Jake had a bad headache for two days a few weeks ago.  Since then he complains of his forehead hurting in the evenings, and occasionally his chest.  He's also said that his leg hurts.  Not sure if it's sore from activity or what, but he wants us to rub or ice it every night.  The worry is never ending.  His 15 month scans are in mid December and we're considering asking for additional scans, or at least talking it over with his oncologist to express our concerns.  Since Jake's only 5 years old it's hard to find out if his complaints are normal things.  He's mature and expressive for his age, but he's still a little kid and doesn't know to differentiate between a pain that shouldn't be there and something that hurts but that he's learning to live with.  Time will tell.  Until then, we take it one day at a time.

-Kait

Summer and Back to School

Wow...the summer flew by and I haven't written anything!  Let's go back to June.  Jake turned 5 on June 9th and partied like a rock star.  We all did.  Now we celebrate all occasions with gusto.  On June 12th, Jake had his 9 month scans which revealed that he was still cancer free!  Celebrate!

Later in June Jake participated in a golf clinic and he LOVED it.  He says his favorite hobby is playing golf, with playing Toy Story 3 on Wii as a close second. 

In July, he took swimming lessons.  The first day was rough, but by the end of the week he was swimming on his own and was confident. 

The rest of the summer was spent playing on the daily.  Then on August 11th, Jake started kindergarten.  He had counted down the days and it had finally come!  His teacher is Mrs. Webb, and is the same teacher that his brother, Ethan, had for kindergarten.  When I filled out the paperwork for school I got the the medical history part and had to put a check mark in the "cancer" box.  Slight nervous break down.  Don't mind me...I'm just the crazy women crying while filling out normal paperwork.  Who knows what the other parents in the room thought, but trust me you'd cry too if you had to check that box.  I pulled Mrs. Webb aside to tell her about Jake's tremendous flatulence, side effect of chemo or he's a gassy kid- nobody knows.  Anyway, if he needs to go to the bathroom she will excuse him to take care of business in private.

He's been complaining of ankle pain sporadically.  When will he complain and us not immediately think "oh shit"?  Probably never.  I assume the pain is from all of the physical activity he's getting but if it becomes not-sporadic we'll head to the doctor.  Jake is scheduled for his one year scans on Sept 15, 2014.  He'll be getting his normal x-ray of the leg and chest, blood work, and an echo-cardiogram to check for damage to his heart.  We're optimistic that we'll be celebrating clear scans, but we appreciate your thoughts and prayers over the matter. I hope to update his blog on a more regular basis, but if I don't you can always follow us on facebook- www.facebook.com/jakersrussell or at www.jakesfight.com

September is childhood cancer awareness month and we are excited to fundraise, advocate, and spread awareness like crazy!  We hope you'll join us :)

Childhood Cancer Portraits Photo Shoot Interview with Jake

Dear 5-year-old Jake

Dear Jake,

How in the world did five years go by so quickly? You have grown so much in the last year and it's very exciting to think about who you will be when you grow up. You have always been mature for your age and you handle the toughest things better than most grown-ups. When I think about your 4th birthday, I can't believe what a difference a year makes. You were bald, pale, and couldn't walk. Fast forward to your 5th birthday and you have a head full of hair, are healthy with sun kissed skin, and can run wild. No matter what, you always have that infectious laugh. You are adventurous, gentle, hilarious, thoughtful, and smart. 

You want to be just like your big brother, Ethan, and you are a wonderful friend to him. You often say the most random things and you make us all laugh. We were taking a walk one day and in the middle of normal conversation you asked, "But, how strong do you have to be to carry a house?" You are really into Superman, Star Wars, golf, and baseball. Your favorite movies (right now) are Tangled, Frozen, and The Lego Movie. Your favorite TV show is Paw Patrol.

 You try your best at everything and you understand that doing your best is winning. But, even if you don't win you are always a good sport. Really, your good qualities are countless but even you have your moments. You aren't mean, but you can get mad and do some screaming. It's interesting because sometimes you're just upset because you think you're in trouble and you're worried that we won't forgive you. Sweet boy, everyone makes a bad choice now and then, even my perfect boy, and we will always forgive you.

 You start kindergarten this Fall and you are counting down the days. I hope you're excitement for learning never fades. Happy 5th birthday, Jakers. You will always be my "littlest" boy.

Love, Mommy

Busy busy busy

Kait:
A lot has been happening over the past month or so!  Here is what we've been up to:

On March 12, 2014 Jake completed his physical therapy program.  We are so thankful for his therapists. They went above and beyond to help Jake accomplish his goals and they made sure that he had fun while working hard. Just incredible, caring people. They have been a very important part of Jake's healing and there is no doubt that we've made lifelong friends. He is really going to miss seeing them every week.  But, it does feel really good to be moving forward. 

Randy signed up to get his head shaved for St. Baldrick's Foundation again this year, and Jake was an honored kid.  We had so much fun at the event meeting new people, listening to some great bands, and watching people get their heads shaved for a good cause.  Jake and Ethan both got to shave a little bit of Randy's head!  If you've never been to an event like this you really should go.  It is amazing to see so many people give in a way that is unique and generous.  If we hadn't been having so much fun I probably would have been crying.  (Does that make sense?)

For the past few months we have been raising money for Rally Foundation for Childhood Cancer Research because Randy (Jake's Dad) committed to running his first marathon.  They formed "Team Jake" and we set a goal of $3000, which we weren't sure if we could reach.  We raffled off two bowling balls, had a bake sale and a car wash, and received multiple generous donations from friends, family, supporters from all over.  We met the goal and went beyond!  Thank you so much to everyone who helped, donated, and prayed for our success. 

 

The kids and I were near the finish line waiting to cheer Randy on.  He did an awesome job and finished the marathon in 4 hours, 38 mins.  I am so proud of him. 

 Our local news, CBSAtlanta interviewed us and aired it on the late night news.  I hope it raises more awareness for childhood cancer and inspires people to do more.  Randy is an inspiration to me, that's for sure. 

CBS46 News

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.