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

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. 

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. 

#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. 

Dear 4-year-old Jake

Dear Jake,
  You are now four years old and you remind us of it daily!  You are so funny, everything you do is because you're four now.  "I am super fast because I'm four."  "I can play longer now because I'm four."  etc. etc.  You say the funniest things and you are very smart.  There are a millions adjectives I could use to describe you!  You are sweet, brave, smart, funny, curious, sensitive, loving, trusting, creative...I could go on all day.  I hate to be writing your birthday letter and have to include the word "cancer" but, you are who you are in some ways because of your fight against cancer.  You are so strong and mature, yet sometimes I wonder if you even know that you are fighting for your life.  Daddy and I are doing everything we can to keep your life as normal as possible so that when you read this letter some day you will wonder what it was like because you can't remember life ever being abnormal. 
 
  You have grown so much during the year of being three, it's remarkable.  You are now a little boy and you try so hard to be like your brother and you are a wonderful big brother as well.  You still have a hot temper and you love to throw things when you are mad.  You have become quite the Daddy's boy, although you are very sweet to me as well.  Your independence is inspiring as you insist on doing most things for yourself even though you can't walk and haven't been able to for almost four months now.  I can't wait to see how much you change and grow over the next year.  You are so excited to be starting pre-k in the Fall and we are very excited for you.  You are a very special boy and your smile can change the world.  We love you so much.

Mommy

Tired...and a little jaded

I have to apologize...I realize that most of the time my blog posts are bitch sessions....if that bothers you....best thing to do would be to hit "back on your browser".  

Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.

I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.

 I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.

 I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.

I want to yell....but nothing comes out....

This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??

I know that which does not kill us makes us stronger...maybe this is killing me? Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!

Under the weather

Kait: Jake wasn't feeling well on Friday so he wasn't able to come to The Color Run with us on Saturday. He has had some pain in his bottom but didn't have a fever until today. He woke up with a fever of 101.8 which is very dangerous for him. He is considered "high risk" so they put him in a room at the emergency room right away. Kind of like an ER VIP. They did a chest X-ray because he has a little cough and swabbed him for strep. Both the test and the X-ray came back normal so we aren't sure why he had the fever this morning. They have given him two antibiotics, one of which targets the intestinal tract so that if he has a tear in there he will be covered. He is being cross matched right now to receive a transfusion. His white blood count was .34 this morning, platelets were 6.7 and ANC was 320. All of those numbers are low. They aren't as low as times before when he has been admitted so they said we might get to go home on Wednesday. If his counts recover enough then he could possibly still get chemo on schedule this Thursday, but that is a wait and see how it goes type of thing. I wouldn't want to be in the hospital for a week straight, but I also don't want to delay his treatment. So, like usual, we are at the mercy of this cancer...more specifically of the treatment. There are so many fundraisers and charities working hard to raise money and donate for research, it just gives me hope that there has to be better treatments on the horizon. I know not for Jake, but for the countless others who will be diagnosed after him. Hopefully in the future the treatment for Ewing's will be just an inconvenience instead of a life changer.

There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:

The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"

Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?

I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.