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

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. 

3 Month scans are clear!

Jake had his 3 month scans on 12/5/13 and they came back clear.  There is no evidence of disease in his body!!!  We are very thankful and are cherishing every moment. 

 

Today is 12/12 and one of our favorite charities is having a fundraising campaign.  They are asking for donations in the amount of $12.12 and if you are able we would love for you to donate in honor of Jake.  This charity is specifically for Ewings Sarcoma research and for helping those families affected by the disease.  Please follow the link below if you would like to contribute.  Love to you all!

https://www.1million4anna.org

 

 

 



Family Late Effects

Kait:  As of tomorrow Jake has been off treatment for 11 weeks.  The life saving poison is out of his system.  We know this because his hair is growing back, he has regained his appetite, he has color in his cheeks, and he has energy.  We continue to give him a heavy duty antibiotic every Saturday and Sunday since his immune system won't be fully recovered for a few more months.  Other than that, he hasn't had any medicine whatsoever.  We went to see his surgeon, Dr. Fletcher on November 1, 2013 and he said that the plates and screws are still intact, in fact they are in the same exact place they were on surgery day.  Jake's growth plates are still working...the growth from the ends of his tibia proves it.  Dr. Fletcher told Jake that he can start walking on both feet again and Jake was so happy, he was smiling ear to ear.  After a quick race down the hall on his walker, Jake put his left foot down for the first time in almost 9 months.  He walked.  We choked back tears of joy.  We had parked on the side of the building that wasn't handicap accessible; there were about 20 stairs to go down to the car.  I got to hold my little boys hand as we walked down the stairs together.  Having his little hand in mine felt so good.  Something I've taken for granted and didn't know how much I missed.  Now it's been almost three weeks since that appointment and today he decided that he doesn't like his walker anymore, and the reason is "because I don't like it."  His preschool teacher said that he refused to use it the entire time he was there.  I think he is feeling stronger and he is determined to walk/run/jump like he used to.  He is inspirational...(and stubborn).  He will not be limited and he is not different. 

The holidays are upon us, the days are getting shorter and flying by even faster.  December 5, 2013 is peaking around the corner and the scanxiety is waving hello.  Jake will have his first post chemo scan that day.  Because of his age and size he will only be getting a chest and leg x-ray.  These are the two places that a recurrence will most likely show up.  His oncologist feels that the exposure to radiation from a CT scan will do more harm than good.  MRI's are now useless for detecting disease in his leg because of all the hardware he has.  If there were to be an area of concern in the X-rays he would get further scans. 

Last week Jake complained of pain in his left foot and actually refused to wear a shoe for two days.  Randy and I looked at each other with fear behind our eyes the whole time.  This brings me to the topic of this post - late effects.  I am not talking about the potential health related late effects that Jake could experience from his treatment.  I'm talking about how cancer has affected me.  So, every time Jake complains of pain the worst crosses my mind.  Ethan complains of a headache and I think of brain tumors.  I don't actually think he could have a brain tumor, it's just that now that we know that the worst can happen it always pops up as a potential possibility.  I call it cancer-causing-irrational-thoughts.  They come and go and I can dismiss them pretty easily, but the word "cancer" rears its ugly head all too often...dammit cancer, get out of my brain!

I read recently that a good percentage of parents have some form of post traumatic stress disorder after caring for a child with cancer.  Oh my gosh, ding!  Hit the nail on the head.  I am ridiculously emotional in spurts, have trouble concentrating, and have guilt.  I can be irritable and feel hopeless.  I often relive the past year while daydreaming.  The thought that my child had cancer still brings tears to my eyes and disbelief to my heart.  I realize that I didn't confront my emotions throughout Jake's treatment as much as I should have.  I didn't cry, mope, or complain.  I had a job to do and that was to get him through chemo, surgery, and recovery.  I didn't have time to worry about my feelings.  I did occasionally cry in the shower or if I was alone in the car but I didn't think it was important to do so.  I thought it was more important to remain focused and composed.  I think differently now and if you are a family member reading this who's child is in chemo, please learn from me and take the time to let your emotions out.  I don't regret anything that I've done throughout our journey, I just wonder if I would feel differently now if I had cared for myself emotionally.  Don't worry, I'll be ok, and I don't feel this way all the time.  I just thought it might be helpful to someone else to know that even though treatment is over it's ok to feel sad because of what you've been through. 

The ability to plan and see into the future is something I never thought would be difficult.  But, after spending almost a year of not being able to plan anything more than a doctor's appointment, we find ourselves having trouble with it.  For me it is just an annoyance.  Things sneak up on me and the days blur together.  It's probably not that much different from our busy life with three kids from before, it just feels foggier.  For Randy it has been a bit harder since he is required to plan ahead for school and work.  I think this will just take time to retrain ourselves.

It's hard to tell if Aubrey has been affected since she was only eight months old at Jake's diagnosis.  I tend to think not because she is the happiest toddler you will ever meet.  Some of the guilt I feel has to do with Ethan and how I didn't realize how much the last year was effecting him.  Ever since Jake finished treatment, Ethan has been happier.  He and Jake play, wrestle, sit side by side, share food, and reek havoc in general.  I didn't realize that not being able to play with Jake caused Ethan so much unhappiness.  There is nothing I could have done differently and I don't think any amount of talking about it would have changed how he felt.  I am just happy to say that Ethan is doing wonderfully and is back to being himself.  He still has bad dreams occasionally, always about me abandoning him somewhere.  I know this is because I was gone with Jake so often.  The reality of that hurts, but someday he will understand why it had to be.  Until then he gets extra love and hugs. 

So, there are all of the skeletons out of my closet.  Every member of our family and many friends were or still are affected by Jake having cancer.  It has changed us and opened our eyes and we have all felt the pain that follows knowing.  Trust me and don't worry, I'm going to be fine because I have so much to be happy about and thankful for. 

Our little hero continues to amaze and inspire everyone he meets, while never knowing his impact.  Jake never complains, always does his best, insists on independence, and shows the goodness in his heart through his smile.  I always say that he'll be blending in and running with the rest of them soon, but I know that he'll never truly blend in because he is a real life Superman. 

Make-a-wish Trip

 



This trip was absolutely amazing! We had so much fun from start to finish and it was truly the vacation of a lifetime. We stayed at the Give Kids the World Village and it was a magical place. I think I'll just give a rundown of each day so that you can fully understand just how special this trip was.

Friday: We arrived at the Village and checked in. The kids were given gifts and we were given a tour of the grounds and the villa that we stayed in.  We went straight to the pool for a swim.

We ate buffet style at the Gingerbread House restaurant at the Village. We went to the "Pirates and Princesses" party next to the pool where Jake and Ethan got to follow a treasure map, found the chest and were given the treasure within.

Saturday:  We went to SeaWorld!  Being a Wish kid means that you don't wait in lines and you also get extra time at the experiences.  For instance, we got to feed the dolphins and everyone in our group got to participate.  Jake got to spend time with a dolphin trainer and she got the dolphin to come up on a ledge so Jake could reach and pet the dolphin.  We loved the dolphin show even though we sat in the front row and got SOAKED!  We saw the Shamu show, fed the stingrays, and went on all the rides.  The Penguin ride was a must see.

Sunday:  We got up early to be at the Magic Kingdom before they opened.  We just made it in time to see the Disney characters open the park.  We stayed there the entire day, went on just about every single ride, and watched the nighttime parade and fireworks show.  We never had to wait in a line since we were a "Wish" family and it made it possible to do everything we wanted to do.  We were given matching t-shirts from friends of ours for the trip (thank you Colleen and Chad!) and it made us feel very special.  It was such a magical day and we all loved being there.

Monday:  We were a little tired from the long day at the Magic Kingdom, so we didn't get to Disney's Animal Kingdom until after 10am.  We went straight to the Kilimanjaro Safari ride where we saw animals we had never seen in person and some we didn't know existed.  We spent a good part of the day there and then went back to the Village for a swim.  We went to the Gingerbread House for dinner and then went trick-or-treating around the Village, followed by a horse drawn hayride. 

Tuesday:  We went to Hollywood Studios and had a great time!  It was a cloudy day and the park wasn't very crowded so that made it really nice.  The first thing we did was go to the Star Tours ride and it was really fun.  It's a simulator and has lots of different stories so each time you ride won't be the same.  On our first ride Darth Vader stopped our ship and told us we had a rebel spy on board that they wanted to capture.  Jake's picture came up on the screen - he was the spy!  Later on that day we had a private meeting with Darth Vader and two Storm Troopers.  Ethan was shocked that he was meeting the real Darth Vader!  We went to the Disney Junior Live show, Indiana Jones, the Great Movie ride, Toys Story Midway Mania, and many more throughout the day. 

Wednesday:  We got up and out the door early and headed to Universal Studios for our last day at the parks.  We went straight to the Harry Potter attractions and loved how it was set up just like the movies.  Jake was too short to go on the ride which turned out to be a good thing since it was pretty intense.  He was able to go on the rides in the Jurassic Park area, Despicable Me, Shrek, Spider-man, and E.T.  and we got to meet lots of characters.

 

 That night we went to the "Castle of Miracles" at Give Kids the World Village where Jake was able to decorate a gold star.  He wanted me to write "Jakers" on it.  He then placed it in the box and the star fairy took it away.  That night she placed it on the ceiling in the Castle. 


 There are over 126,000 stars - 1 for each child who has stayed here

 

 

His star is in the circle above the door

Jake made a wish in the wishing well - he said, "I wish I was a real Superman."  Little does he know he already is.   

 Then he filled the tree with "love" and three magic pillows came out of the box to the left.  One for each kid.

We spent the rest of the night playing in the arcade and eating ice cream.  Forgot to mention that we were allowed to eat all the ice cream we wanted from 7:30am to 9:30pm! 

 

Thursday:  We checked out today and then spent some time playing mini golf.  We went over to Downtown Disney for lunch and some shopping before we left town.  Jake's Great Grandparents live in Bradenton, FL which was on the way home so we were able to stop and spend the night there. 

Friday:  We spent the morning with Great Grandpa and Aline and went to the beach for a couple hours in the afternoon.  Aline made a delicious dinner and then we were on our way home. 

We got home around 3am on Saturday.  We needed to get the rental car returned by 1pm for the official end of our vacation.  From beginning to end, we had the most amazing, once in a lifetime vacation.  Make-a-Wish, Disney, Give Kids the World, Universal, and SeaWorld made us feel like royalty.  It really felt magical and definitely unforgettable.  They made it possible for us to be together and get some closure from the journey that we have been through.  A year ago it seemed like we would never get here but now we know it's possible to heal.  Jake is healing and enjoying life. 

 

We made it.