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

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 :)

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.

Catching Up

Kait:  It is absolutely incredible how quickly Jake has recovered from chemo. He is back to the spunky, playful, adventurous, sharp, and thoughtful little boy he was almost a year ago.  Is it really possible that this year of agony is forgotten in his mind?  We know it isn't all forgotten because he still asks things like "Do I have a poke today?" and "Do I have to go to the hospital today?"  I think it will be a little while before what became his normal routine fades from memory.  

In case you don't follow us on facebook, this is what has been going on:  

On September 5, 2013, Jake had his last chemo infusion of vincristine. 

On September 16, 2013, Jake spiked a fever and since his port was still in we had to take him to the emergency room.  A fever can turn into something much worse in a hurry.  It was 2am on September 17, 2013 when we got there and they accessed his port,  gave him an antibiotic and Tylenol, and checked his blood for infection.  No serious infection was found so he was released at 5am.  His post treatment scans were scheduled for 7am (two hours from then) so we slept in the ER room and then made our way to radiology.  

He had to drink some contrast and was given the isotope for his PET and CT scans.  He was sedated and the scans took about an hour. Next was X-rays of his chest and left leg.  Then he had an appointment with his oncologist to check blood counts.  Next was an echocardiogram to check for heart damage from the chemo.  We then went back to the oncologist and we were told that we could schedule his port removal at our convenience and the preliminary results of the scans were all clear - no evidence of disease!  On the drive home the oncologist called to tell us that the scans had been read in their entirety and they were officially all clear.  Even the echo showed no signs of heart damage.   This was the news we had been hoping and praying for for so long, and honestly it was surreal. We have been in this fight for ten months and all of a sudden we were released.  

On October 1, 2013, Jake had surgery to remove his port. We had to be at the hospital at 6am and he was taken back for surgery at 8:40am. The surgery went very well and only took about an hour for him to be back to us from recovery. This was the final piece of the puzzle for complete freedom from the hospital. Now if he gets sick he can go to his pediatrician like any normal kid.  Even his hair has started growing back!  

We are very excited because Jake's wish to go to Disney World is being granted by Make-a-Wish this month.  We are going to have an amazing vacation and we cannot wait!  We are also going to get to visit Jake's Great Grandpa and Great Grandma on the way home.  

Our next milestone will be seeing Jake's surgeon on November 1, 2013. We are hoping that Jake will be cleared to go back to physical therapy to start learning to walk again.  I can't wait to be able to hold my little boy's hand as we walk side by side. That is something I have missed so much.