2022 - Jake’s perspective

 Jake wrote the essay below for his English class.  

DON’T DO ANYTHING STUPID

   I can barely remember the last time I walked, it’s been so long since I've had a working left leg. That’s all changing soon. I want to be back up and walking by December because that's when my family goes to Disney. Hopefully I'll be ok then, but only time will tell, and my tall brown haired doctor. In January of 2022, I was running, walking, doing anything I wanted, but things don't always go to plan. Right after a delicious lunch of a ham sandwich and water, I went to the gym. My classmate tried to pull a joke on me and pull on my backpack and make me fall. When he did, my leg started hurting, and I was scared because that leg was the leg I had cancer in when I was three. I didn’t feel much pain at first because of adrenaline, when I got up and started walking; I felt a sharp pain in my leg.I told the teacher, "Mrs. Turner my leg hurts and I can't walk."  She asked, "Would anyone like to help Jake get to the nurse’s office?" My friend Antonio volunteered and he helped me walk to the nurse’s office. Twenty minutes later, my step-mom came and picked me up. My step-mom is a nurse so she was asking me a lot of different questions like, "Where does it hurt?" or "What's the pain on a scale from 1 to 10?”  My Dad was working on my computer when I got there, so I just sat on my bed for a while until he wasfinished so I could play video games. I just played video games for the rest of the day.

That Friday, my mom took me to the prosthetics place and I got an uncomfortable boot. When I first walked in the boot it hurt, but I got used to it. I didn't do much those following weeks, but after some time, I was able to walk without the boot. It hurt when I ran, “I hate this. I wish this never happened.” I just lived my life normally for the next month or so. Then in March, someone else kicked me in my bad leg, it didn't really hurt when it first happened. It hurt the next morning, I woke up that day and my leg really hurt when I walked on it. I asked my Dad if he could pick me up early that day, and he did. Thank God he did or my leg would've gotten worse throughout the day. The day after that I went and got x-rays. It turned out, that I had a fracture in my left leg.         

  From that time where the doctor said I had a fracture to the time I got surgery was terrible, I don’t know how I went that long without walking.I was in crutches the whole time, and I couldn't put any weight on it. I can't remember very clearly what happened in those 4 months of my life, but I can tell you with a lot of confidence, that it was pretty depressing. I fell a total of 2 times in that time period, and one of those times I thought that I got a fracture in my foot, but thankfully I didn't. I went on a cruise while I was on crutches and as you can guess, the cruise was not very fun. Although I did enjoy the cruise, it wasn’t very exciting. After the cruise I went to the doctor to get x-rays, and he said that I can get surgery done in 2 weeks. I was very excited that I was finally going to be able to walk again. A few days before my surgery was the 4th of July, so my family and I went to see fireworks. “The fireworks are very exciting and loud!” my sister exclaimed.

  On the day of my surgery my Mom woke me up very early in the morning. On the way to the doctor's we stopped at Sheetz to get some breakfast, but I didn't eat anything because I wasn't allowed to eat food 12 hours before the surgery. When we got there I needed to get x-rays first and then I went to the actual hospital. Igot there at about 8 in the morning but the surgery wasn't until 1 in the afternoon. When I got to the waiting room they put an IV tube in my arm, and they took me to the operating room.They put me under anesthesia and when I woke up I forgot that they had done my surgery so I asked "Are you ready to do my surgery yet?” I didn't remember being put under anesthesia at that point, I thought I had fallen asleep in the waiting room. They put a nerve block in my leg because my leg was hurting a lot. Once they did that I was ready to go to my room. My Mom asked me what I wanted for dinner and after not eating for almost 24 hours, I was hungry, so I asked her if I could have Chipotle, and I did. I couldn't sleep well that night because I couldn't feel my leg so it made it hard to get comfortable. A nurse came in every 2 hours to check on me. The next day I left the hospital because they said that I was all set to go. It was about that time the nerve block wore off and my leg started hurting really bad on the way home. A few days later my leg started to feel a lot better.

  I've been through a lot in my life, cancer, not being able to walk, and moving from Georgia to Virginia. I was 6 years old when that happened. Surgery is really high up on that list, becausethis was tough, like REALLY tough. If there's anything I learned from it is that I need to be more careful with myself, because you only get one body. I recommend that you follow the same, be careful, or as my doctor says, "DON'T DO ANYTHING STUPID".

Childhood Cancer Awareness Month

Childhood cancer awareness month is upon us once again.  It comes with so many emotions, most of them difficult to sort out.  Over the past year we've taken a step back so that we could find ourselves again and give our family the chance to live a normal life not clouded with the C word at every turn.  We made a decision to try to limit our involvement in childhood cancer related events because it's painful.  I know that sounds selfish, and it may be selfish to many people looking in from the outside.  And that's okay with me.  Reliving what we went through so often was incredibly hard on us and we didn't realize it soon enough.  We decided to do what we can in the month of September and maybe a little sprinkled in here and there as well.  This decision doesn't come without doubt.  What about all of the children being diagnosed?  What if Jake relapses?  What about our friends who are still battling?  What about those who have passed?  Are we doing enough??  I don't know the answer to any of those questions.  I do know that Randy and I happier.  We think the kids are happy.  Everyone is healthy.  That's about all we can ask for!  That being said, we're spending every day this month thinking about Jake's Fight and spreading awareness.  We're having a pancake dinner at our church on 9/16/16 from 6pm-8pm to raise money for Rally Foundation for Childhood Cancer Research.  We've been telling our story to new friends and rehashing it with old friends.  Most importantly we are counting the days until Jake has his three year check-up with his oncologist on 9/14/16.  We're hoping to come away with good news so that we can celebrate another year under our belts.  Only time will tell.  -Kait

Dear 7-year-old Jake

Dear Jake,
  You are now seven years old!  So unbelievable that seven years has passed since that 12lb, 7oz turkey came into our lives.  You are such a sweet little boy.  So thoughtful and caring.  You're very smart and interested in learning.  You're excelling at piano and doing fantastic in school.  Your favorite subject is social studies and you want to be a police officer when you grow up.  You're short for your age but are very proportioned.  Maybe you'll have a growth spurt soon but there's no way to tell.  You could have been destined to be shorter, or the chemo could have stunted your growth.  Either way, you are perfect in my eyes.  You're a big helper all the time.  You love doing projects, cooking, coloring, or anything that challenges you.  I'm excited for what this year will bring for you and I hope you know how much I love you.

Love,
Mommy

Dear 6-year-old Jake

Dear Jake,

  Another year has gone by in a flash and here you are, already six.  Mere words could never accurately describe my love for you.  You are an amazing person.  You are brilliant, funny, thoughtful, gentle, compassionate, and kind.  You always take the time to show others how you feel about them. You are still my baby boy in a lot of ways, yet you are very mature.  You still have no idea what you've overcome, how much of a hero you are, or how you've inspired others.  I hope to share all of this with you some day when you're ready.  You excelled in kindergarten this year, in all areas, but especially in reading.  You are very creative - you love to color, play Minecraft, and build with Lego's.  Recently you have aspired to come a "doctor who treats kids in the hospital" and an architect.  I will help you in any way possible to make your dreams come true.  You rarely get in trouble, but if you do it's because of your temper.  You can get mad if you don't get your way, and boy can you bicker with your sister.
  
  You love to play golf and swim - both great sports choices for you!  Otherwise you are a very active boy who loves hide and seek and playing at the playground.  I'm so glad you are living the normal childhood you deserve and I can't wait to see who you become and what you accomplish in life. 

  I love you, my sweet pea.

               Mommy

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.

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