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

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 :)

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

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. 

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.

Jake's Journey video

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Looking back

I'm sitting here in the waiting room before Jake is being sedated for his PET/CT scans and reflecting on the past 10 months.  What a wild ride it has been....I still remember November 5th like it was yesterday.  I remember 2 days later sitting down in a room with Kait and Dr. Katzenstein and we learned about the monster that was going to try to kill our son, and the plan for stopping it.  We left the hospital and stared at the "roadmap" that was before us.....17 inpatient chemo stays....outpatient trips....constant trips to the ER....blood counts....surgery....and on and on....

Overwhelmed seemed inadequate to describe how we felt....

So what do you do when you're facing an absolute mountain that you have no choice but to climb?

You start climbing.....

We didn't climb alone though.  It was evident early on that we weren't alone.  We learned what true friendship was, as time and time again people we knew and were just getting to know stepped up to help.  They offered fundraisers, time, food, anything to help make our day to day climb a little easier.  We learned what family means.  We saw family sacrifice their time and energy to help us take care of our children so I could continue school and keep my shop open.  Time and time again when things seemed their darkest we had each other and our network of friends and family to pick us up.

In the next 2 hours we will reach the top of the mountain and step over the peak.  We don't know what the other side holds, but we know that no matter what we have an amazing network of friends and family to help us along the way.  I said after the Chick Fil A fundraiser in November that "Thank You" seemed inadequate, and this is still true.  I don't know what expression means more than complete gratitude, but that applies here.  Thank you for allowing our family to not feel alone during what has been without a doubt the darkest period of our lives.

No matter where this journey continues, we know that Jake's Fight is not done.  We will continue to advocate for others.  Cancer picked a fight with us, and fight we will.  The stakes are too high and the lives are too precious to walk away now.

Last day of chemo!

Just a short post to let everyone know that Jake received his last chemo infusion today!  It only took a few minutes and now he is done!  Oh happy day!

Interview clip

Can "If" become "When"?

Kait:

We start sentences with the word "if" all throughout the day.  If it isn't raining we can go outside...if you do your homework you can watch tv...if I eat healthy at lunch I can have dessert...if if if.  In our house we have all of those "ifs" plus the ones that are not so normal.  First, the one hiding in the back of our minds- If Jake beats cancer ______(insert tearful sentiment here).  And the current one- If Jake's counts are high enough then he can get chemo.  Unfortunately, that "if" didn't pan out this week.  His platelets were 23 and they needed to be 75.  His hemoglobin was 5.9 so he needed a transfusion.  What was supposed to be his last inpatient treatment turned out to be just a day spent in the clinic receiving blood.  (Donate blood if you can!)  Disappointing to say the least.  I try so hard to go with the flow but it is so frustrating when there is nothing I can do to control the situation.  I'm so ready to be done with chemo that I can taste it.  The finish line is just out of reach, we can almost touch it!  For now I will have to control myself by not let this setback cloud my emotions.  Jake, however, was ecstatic to get to go home earlier than planned.


Green popsicles (hence the green teeth) keep him happy

 His oncologist postponed chemo for a week to let his body recover and hopefully this means he will be able to handle this last round with no problem.  Once he completes the 17th round he will have one more clinic appointment where his port will be accessed and he'll receive vincristine (chemo) for the last time.  That tentative date is September 5, 2013.  Two weeks after that, on September 19, 2013, he will have all of his scans.  Provided his scans are clear, we will schedule his port removal.  We are planning to have a party to celebrate and will share the details once he completes round 17.  I am a big believer in not celebrating too early so we want to make sure he is able to receive chemo next week before we share details. 

I want to stop the ifs.  I want to feel comfortable saying when.  When Jake finishes chemo...when Jake beats cancer.  Unfortunately with this type of cancer there is no remission so we won't know if he beat it for many many years down the road.  You either got rid of all of the cancer cells or you didn't.  And they can lay dormant for an undeterminable amount of time.  At the five year mark we can start to relax a little.  Until then we can walk on eggshells or we can make the choice to live positively and accept that our "when" is finally here.  It won't be easy but I don't want to live my life in fear. 

Things you don't want to hear

From Randy:

I can't tell you how tired I am of these monsters....sure you're sick of me bitching about it...but you need to read this. Tonight I went with Ethan to visit Jake and Kait at Egleston....everything was okay while we visited. On the way out the room across the hall I could hear the child in there SCREAMING in pain....screaming for someone to help him (he is 10 years old)....Kait said he had been ...pretty much vomiting since they got there Thursday afternoon. We stopped and said hi to Colton (another Ewings fighter) and his wonderful parents Scott and Kristi. He has been in the hospital for over a week now with a blood infection and it in ICU (sedated and on a ventilator). He just got moved to the oncology wing today.  He pretty much spent his birthday half sedated, and is currently just trying to keep his head up and hold things in his stomach.

We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?

I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.

Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?

CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....

I'm so angry right now.....

From Kait:  I am so glad that this is the last night of Jake's 5-day chemo.  5 days is a long time to hear sounds of crying, throwing up, screaming, and pain- and they aren't even coming from my kid!  I am so thankful that this time Jake is only crying is when he has to drink his medicine.  Of course he will cry in pain and fear when it is time to de-access his port tomorrow.  If all goes as planned Jake will only have his port accessed two more times...EVER!  I can't wait for Jake's healing to be complete.  Then maybe Randy and I can start healing our hearts from the agony we have been living for the past 10 months. 

 

We are watching a lot of movies, going to the playroom, and visiting the gift shop to pass the time and he is in a pretty good mood.  He keeps asking when Thanksgiving is because that is tentatively when he will be cleared to start walking again.  He says he is tired of crawling and doesn't like hopping on his walker because he isn't fast enough to play with his brother.  We are asking for prayers to keep the cancer away and specifically for complete healing in his leg so that he can walk in November.  We know there is a chance that it won't heal like it needs to, but we are remaining optimistic.  Jake says "hi!"‪

On the news!

Just wanted to post the video of Landon with Miles2Give and Jake that ran on the 10pm news here in Atlanta!  More on the visit with Landon to come...

http://www.myfoxatlanta.com/story/22961750/runners-log-3200-miles-fight-sarcoma-cancer

Atlanta News, Weather, Traffic, and Sports | FOX 5

Wallow, anybody?

Kait:
It's been 9 months of "the Jake show."  Ethan has to be aware that Jake gets more attention most of the time, yet he holds absolutely no ill will toward him.  There are streaks of jealousy but it doesn't seem like any more than normal brothers experience.  (There's that word again...normal.)  In the past few weeks, Ethan has been acting out, talking back, and just being mean in general.  Not to Jake, to me.  We have tried every type of reasonable punishment to no avail.  My Mom asked him why he is being so mean to Mommy and his response was, "because she doesn't like me."  Stab me in the heart.  How could my sweet angel think I don't like him??  I am so sick of the affects that cancer has had on our family!  So, after bawling my eyes out about it, I did some google-ing and read that it is healthy to let your children see you cry once in a while.  It teaches them that expressing emotion is normal.  I do my best not to let them see me cry in the past 9 months but it got me wondering, should I have been doing this all along?  I took Ethan to church with me on Sunday since Jake wasn't feeling well and Randy stayed home with Jake and Aubrey.  We were having fun together.  He was happy and his usual sweet self until the service started.  Then the behavior began.  I tried to correct him lovingly and with positive reinforcement, but it only resulted in more obstinacy and rudeness.  I finally just ignored him because I wasn't getting anywhere and it was almost time for him to leave with the children's group.  After church was over I met up with Ethan and the children's group leader and found that he had a hard time then as well.  Randy talked with him when we got home and I decided it was a good time to turn on the water works and test out this crying theory.  It was pretty easy for me to draw up some emotion- imagine that?  As soon as he saw me crying he started crying.  And he cried...and cried...and cried.  I don't know if he was upset because he had upset me or because he just really needed to let out some pent up emotion.  Either way, he has been back to being my angel ever since.  It does make total sense to me because when I am full to the brim with stress, anger, and emotion, I am quick to anger.  But when I let it out it's like a fresh start.  Like a little of my burden is no longer mine. 
Sometimes I feel like wallowing in self pity and I wonder how we got here.  Why did this happen?  How did this happen?  What are we going to do when it's over?  I can't answer any of them.  And then, it is so hard to read about the kids who are dying every day.  They went through similar chemo regimen hells and still lost.  All the time we are connected with another family who is going through the same thing we are going through.  It is amazing that something that is supposedly so rare is everywhere we look.  It's not just kids fighting Ewings either.  There are people in their early 20's and older fighting just as hard as Jake.  All the time we talk about hoping that Jake doesn't remember most of this.  I mean what do you remember from being three or four?  I said that same sentiment to someone who has a loved one fighting, except his loved one is older and a parent.  The reply I heard was something like "unfortunately if my loved one doesn't make it, her children are so young that they won't remember her."  I have thought about this conversation so many times and every time is makes me sick with heartache.   Then I realize that if Jake didn't make it, Aubrey wouldn't remember him, and Ethan's memories would be vague at best.  I don't know why I'm sharing these gut wrenching things right now.  Maybe I'm just in a mood to wallow.  Cancer invokes a world of rollercoasters, except that you don't have to choice of whether or not to ride.  Through all of these ups and downs we've learned and grown.  We manage the day-to-day, put on our brave face, and live life to the fullest, the best that we can.  I can't say that it gets easier because I don't know yet.  I just only hope that it does.  #jakesfight

Ethan, our little "photo bombing" goofball

 

Not My Child

Randy:  I remember Kait coming home from doing a wedding (photographer) a few years ago and telling me about being bothered by one of the children in the family.  It appeared that the young girl had some sort of cancer.  I guess it's pertinent that Kait was and is a very talented photographer, and in her previous life actually did more than just take pictures of our smiling children.  I don't remember exactly when it was, but it was after Ethan was born because we talked about how much it bothered her to see a young person (I believe this girl was between 10-13 yrs) and then imagine it being our child. (foreshadowing)

I know...this almost seems made up....but it really happened.  She brought it up last week and I had honestly forgotten about it.  We were discussing the reasons why it's so tough to raise awareness, why it can be so difficult to get people outside of the inner circle of close friends and family to do more than like a status on facebook.  When Kait told that story and we talked about it it all made sense that in many cases it's just too difficult to face as a parent.  The idea of imagining your innocent little baby with something this awful can be a bit overwhelming and make you lose a bit of sleep.  It's just easy to say "not my child".

Over the past few months we've definitely seen the best that exists in our society.  From people making financial contributions that we know don't have the extra money to do so, fundraisers where businesses forgo profits to help our family, to people just offering time to help watch our kids so we could enjoy a night to regain our sanity.  It would also be safe to say that we have seen our fair share of friends abandon us, people we've known for many years never reach out at all, and even some family members have distanced themselves from the reality of this situation.  I think for those people it's just too difficult to expose yourself to the thought that this could happen to your own little angel.

What's the point of all of this?  I honestly don't know, but we have to find a way to get those with their fingers in their ears and eyes closed to open up and see this reality.  Children are dying....everyday...and the ones that survive are left with long term side effects.  The pictures of cute bald kids smiling with a stuffed animal and a balloon isn't a reality.  If anything they do a disservice to how brutal these treatments are.  The Aflac Cancer Center is an inspiring place with an amazing staff and the strongest people you will ever meet, but it's also a depressing place.  You watch young children with the life sucked out of them, parents walking around like zombies...and it's always full (there are about 50 rooms between the BMT and hematology/oncology wings).  It's a place where hope and optimism can turn into anger, pain and despair.  We have tried to share the good and bad of our journey so far, but we have so far to go to bring the reality of this struggle to the mainstream where it needs to be.

No it's not your child...and it's really disturbing to imagine it being your child....but

It's wasn't our child either....

If the boot fits...

Jake had an appointment to see his surgeon this morning to get a new boot for his leg. He has x-rays to make sure that the screws and plates are still intact, and everything looks "as expected". There hasn't been much healing yet and I guess there won't be much until he finishes chemo.  Unfortunately, the chemo stunts the rate of healing.   
He didn't have to get a new boot, but they did make some adjustments to his to try to make it more comfortable for him. Jake still wanted to take it off on the ride home so I guess it's just going to be something we struggle with until he can walk (sometime in November).
Jake is feeling pretty well today and we are thankful for that. Please keep praying for our baby...we know it's helping.

Last night, there was a fundraiser for us at Classic Bowl in Rome, GA.  Jake's counts were high enough for us to be able to attend and we had a blast.  Great family and friends were there to support Jake in his fight, as well as to bowl!  Here is a link to the blog that the photographer posted last night. 
http://aprilingramphotography.blogspot.com/2013/07/a-benefit-for-jakejakes-fight-against.html

Didn't she do an awesome job?  In spite of all the bad we are still making good memories to last a lifetime.  Take that cancer!

The Rug Under our Feet

Kait (Jake's Mommy):
We keep hearing of children becoming seriously ill or even dying from infections and complications from the effects of chemo.  It is amazing how in the blink of an eye your child can go from playing to fighting for his life.  Jake is doing well today, but nothing is promised and at any moment he could fall ill as well.  Every day I pray to God to keep watch over Jake.  Please don't let the rug get swept out from under us.  I don't ever want to be told to "say our goodbyes" to him because he may not make it through the night.  I hate having these thoughts on a daily basis.  I hate walking on eggshells and living in fear.  I can't wait to tell Jake that he is done getting chemo...done with shots...done with finger pokes.  Can't you just imagine the smile on his face when we get to tell him that?  I'm so thankful that we are getting closer to being able to with every passing day.  I know he is ready to be done going to the hospital too.  I think he must have dreams about going there because he wakes up and the first thing he says is "Do I have to go to an appointment today?"  It sucks that he has to go through this.  A four year old, let alone any child, should not have to worry about getting poked and prodded on a daily basis.  It's safe to say that this "cancer" thing is getting old. 

So there's my long overdue rant, now hopefully I can more forward.  Jake has four more treatments to complete until his protocol is finished.  Today is day 6 (day one is the first day he received chemo this round) and his counts will get to a low point any time between now and day 10.  He goes in for a clinic appointment to check blood counts on Monday and he will also get a (day 8) Vincristine (chemo drug) push while we are there.  This will be a short appointment but nonetheless, he will not be happy about going.  The boot he has been wearing on his left leg has become too big for him and it starts sliding off and rubbing on his foot almost immediately after we put it on.  It has gotten to where he doesn't even want to wear it because it is uncomfortable.  So, I called his surgeon and scheduled an appointment to get him refitted for a new boot this Tuesday.  Hopefully that will solve the problem of getting him to keep the boot on.  I get so worried about him playing on the floor and crawling around with nothing protecting his leg.  Our house is pretty full since we have two adults, three kids, two dogs, and two cats living here.  It's a zoo and it's never quiet, but we wouldn't change it for the world.  But, it does mean that there is always someone running around who could step on or trip over Jake's leg.  Should I let him play and have a good time with his brother and sister, or try to keep him in a protective bubble?  I want to let them play because it is such a sweet sound hearing them laugh.  But would it be worth having something happen to his leg?  I don't know the answer, but I think it is important for the kids to have fun together.  I only hope that the way that I take care of them and the choices that I make for them are the right ones. 

#jakesfight

Kait:
Every night I lie in bed and so many things come to mind that I think, oh I should write about that!  And then I fall asleep and it's gone.  So before I forget about today...

It was an early morning.  Jake and I had to leave by 7:30am to get to Atlanta for his 13th chemo treatment.  After a ton of traffic and a detour, we arrived 10 minutes late for his appointment at 9:30am.  The whole way he went back and forth between talking about random 4-year-old things and saying "but, I really don't feel like going to the hospital today!"  He asked, as he always does, "do they have to do my port?"  We have a strict no lie policy because he is really too smart to be tricked.  Then he cries and says again that he just doesn't feel like going.  Well, neither do I.  But we're going to get this one under our belts and then we'll only have four more to go!  His favorite triage nurse (Ms. Jamilla) does her job quickly and distracts him by blowing bubbles.  He still screams during the finger poke, but the bubbles resume and he recovers very quickly.  Next stop is the clinic room where we go over all his medications and when he last took them, and is he pooping?  The pooping is still an issue for him.  He is so emotionally scarred from the pain he experienced while having mucusitis that he still holds it as long as physically possible.  We are baffled by his strength...let's leave it at that. 

His counts came back from the lab and I was really surprised to find out that his hemoglobin was only 7.8 and his platelets were 38.  The way they describe it to me is that if you or I had that low number for hemoglobin that we wouldn't get out of bed.  Jake looked a little pale but he certainly didn't act like he was low on energy.  His white blood count was over 11 so we aren't concerned about that number and we chose not to do a transfusion for the hemoglobin number because he is acting fine and we can assume that the number is on the rise.  All of this means that he couldn't be admitted for chemo today.  I am getting much better about it (because I have no choice) but I still don't like it when plans change so I'm a little disappointed.  Not just because the plans changed, but I wanted to get another round over with.  Oh well, can't control it and we do what is best for Jake. 
A friend that we met throughout the Ewings sarcoma journey was planning to come up to the hospital today so that we could meet in person for the first time.  Her name is Carol Basso and she is with 1 million 4 anna, a Ewings sarcoma charity based out of Texas.  Her beautiful daughter, Anna, passed away two years ago from this horrible disease and yet Carol continues to offer support, prayers, friendship, love, and encouragement to fellow Ewings families.  For meeting only for the first time we feel like we've known her forever.  Jake played a card game with Carol and he cracked us up with his enthusiasm for the game.

My cousin, Meaghan, mentioned something to my brother, John, about how when you're pregnant you notice all the other pregnant women and think, gee is everyone pregnant?  Then she said it seems the same way with cancer.  I don't know if  any of you have experienced it as well, but we have found so many kids battling the same cancer as Jake, as well as many other forms.  Were we just blind to it before? 

Our friend, Jennifer, was getting a ring fixed at a local jeweler recently and the jeweler saw her "Jake's Fight" bracelet and was taken aback.  It turns out that he had Ewings in his ribs and spine when he was 12 years old and is now 59 years old.  He's a survivor...a long term survivor!  We went by the shop he works at today to meet him and he told us about his treatment and the late effects that it caused.  But mostly he just empathized with what we are going through.  It is such a good feeling to have tangible evidence that this disease can be beaten.  Of course we are always reminded about how fragile life is when we hear of two children passing from Ewings this week.  Things become routine and normal for us and it's easy to let the seriousness of Jake's cancer get pushed to the back burner.  Plus, if you thought about it all the time you would be an emotional wreck!  Then when you read that someone else's baby died from the same disease it's like a smack to the back of the head.  This is serious!  Yes, he's doing well but at some point all of these kids are too.  Once the reality knocks me upside the head I feel a strange sense of urgency to spread awareness.  I hope that you do too and want to share Jake's story with anyone who will listen.  He's just one boy, but to us he is one remarkable boy, and certainly not the last who will be diagnosed with cancer.  We created a website about Jake's fight so that his journey can be easily shared in one place.  It is www.jakesfight.com and you can find lots of information there.  Please visit the website and share it with everyone you know!

Most of you know that Jake has an older brother, Ethan and a younger sister, Aubrey and that I'm a photographer.  I have been on hiatus since last November, but I still make time to take pictures of my kids.  I took this one of Ethan around his 6th birthday last month.  Isn't he handsome? :)  He has been at my parents house for the past 10 days and he comes home tomorrow.  We have missed him so much.