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.

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.