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 at UGA by Jill Slabacheski

We were asked by Jill Slabacheski, a student and member of Rally at UGA, to do an interview about our family and experiences with cancer and Rally Foundation.   She was creating a campaigns project for one of her classes and decided to do it about the Rally Foundation. For one of the pieces, she wrote a magazine spread showing the heart of the organization. Below is the article she wrote. (We think she did an awesome job!)

  The Russell family was thrown for a loop when they brought Jake in to the
hospital for what they thought was a minor injury but received news that would change their lives forever.
  For about six weeks, Jake had been waking up at night with a sore ankle, which parents Randy and Kait presumed to be “growing pains,” for he was at the susceptible age. On October 11, 2012, a kid on a bicycle hit Jake in the street, and two days later he had whacked his shin on a chair causing him agony. Thinking he might have fractured his tibia when he had fallen two days prior, Randy and Kait took Jake to his pediatrician and she ordered an x-ray.
  When the doctors relayed the news to the family that Jake had Ewings Sarcoma, a rare bone cancer most common for those in their early teen years, the family was at a loss for words.
“I remember looking at Kait and seeing the pain in her eyes and holding her,”
Randy said, “I was completely numb for 24 hours. It seemed like a bad dream that I was sure I would wake up from.” Kait agreed. She recalls thinking, “Oh my God, my baby has cancer. This is really happening – this is not a dream.”
  Being so young, Jake and the other two children, Ethan and Aubrey, did not fully understand the extent of the procedures and everything surrounding the processes in general. They knew Jake was sick and needed to be taken care of, but the ability to grasp the intensity of the matter was unattainable. Kait believes this was more or less a good thing because they did not know that Jake’s life was in danger with every step they took throughout the journey. Ethan, the eldest of the three, was worried about his best friend’s continuous visits to the hospital, but never fully comprehended the need for the revisits.
Ethan, whose main goal throughout the entire process was to keep a smile on Jake’s face, never failed to stay strong.  When asked what his favorite part about being a big brother is, he proudly responded, “Protecting [my] little brother and sister.” After watching the way the three of these children interact, I do not think anyone would disagree with this statement.
  Jake spent the majority of his time receiving treatment and recuperating at
Children’s Healthcare of Atlanta, Egelston, at the Aflac Cancer and Blood Disorders Center. An extensive process calls for an extensive team, and Jake received top of the line care from an amazing group of individuals. Pediatrician Dr. Hutchins-Howard, oncologists Dr. Katzenstein and Dr. Cash, surgeons Dr. Fletcher and Dr. Oskouei, Jake’s favorite nurse Lauren Yeomans, child/life specialist Layne Umberger, and all of the countless other employees of CHOA made Jake’s fight a pleasant one, and never ceased to make the Russell family feel as comfortable as possible.
“I honestly don’t know how they do it, going in and smiling everyday,”
commented Randy, “We never seemed to meet an employee that wasn't in a good mood. I don’t know how you deal with what they do on a daily basis and still smile. They are special people.”
  Devastating events such as a pediatric cancer diagnosis put a family’s strength
and love to the test. The Russell family fought through a heart wrenching
experience that  most families only visit in their worst nightmares. Not only have they become closer, but  also they have learned how important the entire family unit is in crisis situations. As parents, Randy and Kait have learned that life is a precious gift and every day should be enjoyed and spent learning the ropes of life, no matter the road you take to get there. They have become more open to accepting the idea of “what is,” rather than thinking about the “what if’s” in life.
“I have learned that children are much stronger than adults. I learned that I’m a
lot stronger than I thought I was. I learned that cancer itself is very painful and the treatment for it can be almost as bad,” Kait said. “You learn also that it’s okay to hurt, and that it’s okay to let people see that you’re hurt. It’s what makes us human,” Randy added.
  The Russell family continues to take everything that they have learned over the past couple of years and put it in to their daily lives. This year, Ethan is attending Camp Sunshine in Atlanta where he will spend time with children and families that have gone through similar experiences. Campers who have endured the challenges of cancer in their family create a network of support and gain new strength and hope as they learn from one another’s experiences. The Russell’s also have all become strong advocates for the Rally Foundation and Be the Match, spreading awareness of pediatric cancer and sister organizations. Childhood cancer research and awareness is extremely underfunded, which is both alarming and unacceptable. Children and adults are different in terms of
what they can physically endure for medical treatments, and it is imperative that this focus be paid more attention, for it is the leading cause of death for children ages 0-19 in the United States. This is why they Rally.
  Jake had commented on the fact that if he could be any superhero, he would be Superman. Little does he know, he is the true superhero himself after defeating the harshest form of kryptonite imaginable.

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 :)

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. 

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....

#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

Pressing on

Kait:  We are working hard to keep Jake hydrated and eating after his 11th treatment last week.  He went in last Thursday for his day 8 vincristine (chemo drug) push and he did okay.  He was very nervous about this appointment and therefore there was a bit more crying than usual.  Since then he has complained of some throat pain and "fuzziness" in his arms and hands, and has had many many bouts with rage.  The fuzziness is neuropathy caused by the vincristine and will hopefully go away once chemo is over.  In the meantime it is hard to hear him cry because he can't hold his spoon or play Mario Cart without his hands hurting.  He has had 5 physical therapy visits so far and is doing great with it.  He is scheduled for his 12th chemo treatment, which is 5 days inpatient on 5/31/13.  During that stay he will have x-rays of his leg as well as a chest CT scan which I'm told is routine and not something to worry about.  It's funny though because as soon as they say "don't worry" the scanxiety kicks in.  There shouldn't be anything to worry about but it's almost impossible not to worry.  Speaking of worry, we took Jake's sister Aubrey for her 15 month check up and found that she has a heart murmur.  Her pediatrician referred us to a pediatric cardiologist to have it checked out.  Better safe than sorry is our motto!  She doesn't think it is something to worry about (there's that word again!) so we're trying hard not to. 

 

Jake's brother, Ethan, had a fantastic 6th birthday last weekend and we hope to make Jake's upcoming 4th birthday on June 9th just as wonderful.  Here is Jake's 1st year video and if you didn't already know, he was a big baby.  12lbs, 6.9oz, 22.5 inches

 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

As of 5/26/13:

11 rounds of inpatient chemotherapy, 4 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 3 echocardiograms, 5 x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans.  You have been sedated 3 times and put under general anesthesia 3 times.  Your port has been accessed 24 times

Treatment number 11

Kait:
Jake is being admitted today for treatment number 11. This is the last time that he will get doxorubicin, the "red devil" that causes mucusitis and heart damage. Because it can cause heart damage, Jake will have an echocardiogram before they start chemo today. I'm guessing that if there is anything wrong with his heart that they won't give him dox today. He has had echocardiograms before with clear results so we are hoping for the same today.
We are sitting in a clinic room watching Thomas the tank engine while we wait for an inpatient room. Admit day is the longest day of waiting. We got here at 10am for his appointment, signed consent forms, got labs and vitals, waited for the lab results, and got some juice. His EMLA cream is on his port and we are ready to get the port accessed and start his fluids.
Now it's 12:00 and he has just had his port accessed. He screamed "no no no no don't do it. Please no," over and over. The nurse is very quick so it's done within a few minutes and now he's back to watching his movie. He did ask for an extra piece of tape on his tube so that "mommy won't pull it out and hurt me." Kids have such great memories. Ugh.
Once he gets a bag of fluids in him he can give a urine sample and then the chemo can be ordered from the pharmacy. Although, not before the echo. So that is an added thing to wait for today.

Tomorrow is Ethan's last day of school and he is so excited to celebrate his birthday at school. Randy is going to bring cupcakes at lunch and I am not happy to be missing it. At least this is only a two day treatment so we can be home tomorrow afternoon and then celebrate his birthday on Saturday. We are hoping he will feel happy, special, and loved. We are trying to make his day extra special because he feels the effects of Jake's cancer too and he deserves to be the center of attention.

This past week, Jake has started physical therapy. He is to go twice a week for 8 weeks. They are mostly doing strength training for his arms and right leg plus stretching and massage on his left leg since he isn't allowed to walk. He loves it and it's so nice to take him to an appointment where he doesn't cry about going. This summer is going to be a challenge because Jake wants to do everything that Ethan does and doesn't understand why not. He wants us to be his legs to play tag and hide and seek. Of course we can do this sometimes but not all the time. I mean, he is heavy! Plus we have Aubrey to chase after as well. And, her favorite thing to do outside is run away. Hopefully, Jake will be able to learn to maneuver better in his wheelchair so that he can have a little more independence while simultaneously saving my aching back.

One other piece of news is that Jake's oncologist is leaving for a position at Vanderbilt in two months. We like him a lot so this was sad news for us. We are thankful that he is his doctor for the majority if his treatment and we know there are wonderful doctors who will take over for him.
It's a scatterbrained post like usual! Thanks for all of the well wishes, thoughts, and prayers for our whole family and for following our journey.

Graduation...and one more hurdle

Today was a great day for Jake as he got to graduate from preschool at Monroe High School as part of the Little Learners program.  From day one he has loved going and meeting new friends, and the students that teach have been absolutely fantastic.  We learned tonight just how bright our future is with these high school students that plan on being educators, they are truly special for all that they do.  The entire program is lead by Lisa Sizemore, who we could fill the blog with adjectives describing how wonderful she has been to our son and our family from the very beginning.  The entire program has gone out of its way to accommodate Jake's condition and have been so supportive in including him in every activity possible.

Tonight he received his diploma after a very cool presentation full of music and a video recapping the year with the Little Learners.  It would be nice to say it was all smiles, but there were some emotional parts when we saw Jake's pictures from early in the school year.  He was so innocent and healthy, having no clue of the monster that lurked in the shadows.  It was also an emotional moment when he got his diploma.  One of his favorite students Zach pushed him across the stage to a great round of applause from the audience.  Anyways it was a great night full of laughs, playing, food, and getting to be around the kids that have been so kind to our little man this year.  Mrs. Sizemore has a great group of students and we are so thankful Jake was able to be a part of the program.

Tomorrow is really the last real unknown or hurdle we will face before the final chapter.  We will meet with the talented Dr. Fletcher to determine how well Jake's leg has healed and if he is ready to start with some light physical therapy and have his cast taken off.  We hope that everything is healing well, as Jake has said little to nothing since the first two weeks after the surgery.  Hopefully the news is good and we can take one more step towards our little fighter going back to being a little boy again.

After the results tomorrow night we'll post another update and let everyone know what Jake's next steps are.

The Gorilla in the Room



Randy:  There haven't been that many posts from us the past few weeks, and there are a couple of reasons for that.  I guess both of us feel like we haven't had much new happening and so we assume the other has something to blog about.  Anyways here we are, 2 days home from treatment number 10.  We're past the halfway point....time flies when you're having fun....RIGHT?...(crickets).  I have come to grips with what brought some of the anger and emotion in the last blog out.  You see since this all started in October we have had a constant barrage of dates and deadlines to look forward to.  Since November 5th when Jake was diagnosed there has been a gorilla in the room that we were distracted from, which is his mortality, and our future as a family.  We didn't realize it but we are at the point in the treatment plan when we start to wait.  I mean there are plenty of chemo treatments left, but those are things we've dealt with, old news.  The next new and excited chapter in this story is the ending.  We find out next that either Jake beats this and goes on to live a normal life or......the other ending.  That has been a tough reality to face, and to put it in other terms is the gorilla just stood up and introduced himself.  We realize this has led to a lot of tension internally, and it has spilled into our relationships with each other, our friends, and anyone else close to us over the past few weeks.

Kait had been taking Jake to all of his 2 day treatments because I have school on Thursdays and work both nights, but this time I offered to take him and close the shop because Ethan had an art show at school.  I have been to Egleston many times, and it has a weird "home" feeling now, but I hadn't been with him during a clinic admission yet, so this was new territory for me.  It started simple enough but quickly went downhill as he pooped his pants just after getting into a clinic room.  Now I need to say that Jake is completely potty trained, but since his nasty mucositis he is very scared to poop, so he holds it......for more than a week at a time.  This is important because when "it" happens....IT HAPPENS.  I had to take him to the lobby bathroom and it was down his legs, so his pants had to be cut off (can't get cast wet), all over his wheelchair.  I finally got him back into the room with some shorts on and we waited.  About 10 minutes later he informs me that he needs to pee, so I carry him to the triage station bathroom....

and the day got much worse...

As I picked him up I didn't realize that his tube was caught under the base of his IV pole and it pulled it out.....completely.  Fluids were already running so it bled like a head wound.  It was down his legs, on his sock, all over me, and the only thing I could do was pull the emergency help tether on the wall.  About 6 nurses came to help and get the access needle completely removed.  I took him back to the room and he calmed down after a while.  Of course then he had to have his port accessed again so he had to deal with that a second time (his least favorite part of the hospital).  This has happened two other times, once by each of us, but this was apparently the worst because every time I went to pick him up or move him the rest of the day or Friday he would whimper and say "Please don't hurt me daddy".....ouch.

Anyways the rest of the stay was pretty uneventful, as Jake met some new friends in the playroom and I met some more parents to share stories with.  When in the room he watched Team Umizoomi and Toy Story 3.  This was a lighter chemo load as the "red devil" (doxorubicin) was not on the schedule this time so we were discharged by lunchtime on Friday.  Jake takes everything in stride and smiles no matter what.  This quote seems fitting for his predisposition to everything: