3 Month scans are clear!

Jake had his 3 month scans on 12/5/13 and they came back clear.  There is no evidence of disease in his body!!!  We are very thankful and are cherishing every moment. 

 

Today is 12/12 and one of our favorite charities is having a fundraising campaign.  They are asking for donations in the amount of $12.12 and if you are able we would love for you to donate in honor of Jake.  This charity is specifically for Ewings Sarcoma research and for helping those families affected by the disease.  Please follow the link below if you would like to contribute.  Love to you all!

https://www.1million4anna.org

 

 

 



Family Late Effects

Kait:  As of tomorrow Jake has been off treatment for 11 weeks.  The life saving poison is out of his system.  We know this because his hair is growing back, he has regained his appetite, he has color in his cheeks, and he has energy.  We continue to give him a heavy duty antibiotic every Saturday and Sunday since his immune system won't be fully recovered for a few more months.  Other than that, he hasn't had any medicine whatsoever.  We went to see his surgeon, Dr. Fletcher on November 1, 2013 and he said that the plates and screws are still intact, in fact they are in the same exact place they were on surgery day.  Jake's growth plates are still working...the growth from the ends of his tibia proves it.  Dr. Fletcher told Jake that he can start walking on both feet again and Jake was so happy, he was smiling ear to ear.  After a quick race down the hall on his walker, Jake put his left foot down for the first time in almost 9 months.  He walked.  We choked back tears of joy.  We had parked on the side of the building that wasn't handicap accessible; there were about 20 stairs to go down to the car.  I got to hold my little boys hand as we walked down the stairs together.  Having his little hand in mine felt so good.  Something I've taken for granted and didn't know how much I missed.  Now it's been almost three weeks since that appointment and today he decided that he doesn't like his walker anymore, and the reason is "because I don't like it."  His preschool teacher said that he refused to use it the entire time he was there.  I think he is feeling stronger and he is determined to walk/run/jump like he used to.  He is inspirational...(and stubborn).  He will not be limited and he is not different. 

The holidays are upon us, the days are getting shorter and flying by even faster.  December 5, 2013 is peaking around the corner and the scanxiety is waving hello.  Jake will have his first post chemo scan that day.  Because of his age and size he will only be getting a chest and leg x-ray.  These are the two places that a recurrence will most likely show up.  His oncologist feels that the exposure to radiation from a CT scan will do more harm than good.  MRI's are now useless for detecting disease in his leg because of all the hardware he has.  If there were to be an area of concern in the X-rays he would get further scans. 

Last week Jake complained of pain in his left foot and actually refused to wear a shoe for two days.  Randy and I looked at each other with fear behind our eyes the whole time.  This brings me to the topic of this post - late effects.  I am not talking about the potential health related late effects that Jake could experience from his treatment.  I'm talking about how cancer has affected me.  So, every time Jake complains of pain the worst crosses my mind.  Ethan complains of a headache and I think of brain tumors.  I don't actually think he could have a brain tumor, it's just that now that we know that the worst can happen it always pops up as a potential possibility.  I call it cancer-causing-irrational-thoughts.  They come and go and I can dismiss them pretty easily, but the word "cancer" rears its ugly head all too often...dammit cancer, get out of my brain!

I read recently that a good percentage of parents have some form of post traumatic stress disorder after caring for a child with cancer.  Oh my gosh, ding!  Hit the nail on the head.  I am ridiculously emotional in spurts, have trouble concentrating, and have guilt.  I can be irritable and feel hopeless.  I often relive the past year while daydreaming.  The thought that my child had cancer still brings tears to my eyes and disbelief to my heart.  I realize that I didn't confront my emotions throughout Jake's treatment as much as I should have.  I didn't cry, mope, or complain.  I had a job to do and that was to get him through chemo, surgery, and recovery.  I didn't have time to worry about my feelings.  I did occasionally cry in the shower or if I was alone in the car but I didn't think it was important to do so.  I thought it was more important to remain focused and composed.  I think differently now and if you are a family member reading this who's child is in chemo, please learn from me and take the time to let your emotions out.  I don't regret anything that I've done throughout our journey, I just wonder if I would feel differently now if I had cared for myself emotionally.  Don't worry, I'll be ok, and I don't feel this way all the time.  I just thought it might be helpful to someone else to know that even though treatment is over it's ok to feel sad because of what you've been through. 

The ability to plan and see into the future is something I never thought would be difficult.  But, after spending almost a year of not being able to plan anything more than a doctor's appointment, we find ourselves having trouble with it.  For me it is just an annoyance.  Things sneak up on me and the days blur together.  It's probably not that much different from our busy life with three kids from before, it just feels foggier.  For Randy it has been a bit harder since he is required to plan ahead for school and work.  I think this will just take time to retrain ourselves.

It's hard to tell if Aubrey has been affected since she was only eight months old at Jake's diagnosis.  I tend to think not because she is the happiest toddler you will ever meet.  Some of the guilt I feel has to do with Ethan and how I didn't realize how much the last year was effecting him.  Ever since Jake finished treatment, Ethan has been happier.  He and Jake play, wrestle, sit side by side, share food, and reek havoc in general.  I didn't realize that not being able to play with Jake caused Ethan so much unhappiness.  There is nothing I could have done differently and I don't think any amount of talking about it would have changed how he felt.  I am just happy to say that Ethan is doing wonderfully and is back to being himself.  He still has bad dreams occasionally, always about me abandoning him somewhere.  I know this is because I was gone with Jake so often.  The reality of that hurts, but someday he will understand why it had to be.  Until then he gets extra love and hugs. 

So, there are all of the skeletons out of my closet.  Every member of our family and many friends were or still are affected by Jake having cancer.  It has changed us and opened our eyes and we have all felt the pain that follows knowing.  Trust me and don't worry, I'm going to be fine because I have so much to be happy about and thankful for. 

Our little hero continues to amaze and inspire everyone he meets, while never knowing his impact.  Jake never complains, always does his best, insists on independence, and shows the goodness in his heart through his smile.  I always say that he'll be blending in and running with the rest of them soon, but I know that he'll never truly blend in because he is a real life Superman. 

Make-a-wish Trip

 



This trip was absolutely amazing! We had so much fun from start to finish and it was truly the vacation of a lifetime. We stayed at the Give Kids the World Village and it was a magical place. I think I'll just give a rundown of each day so that you can fully understand just how special this trip was.

Friday: We arrived at the Village and checked in. The kids were given gifts and we were given a tour of the grounds and the villa that we stayed in.  We went straight to the pool for a swim.

We ate buffet style at the Gingerbread House restaurant at the Village. We went to the "Pirates and Princesses" party next to the pool where Jake and Ethan got to follow a treasure map, found the chest and were given the treasure within.

Saturday:  We went to SeaWorld!  Being a Wish kid means that you don't wait in lines and you also get extra time at the experiences.  For instance, we got to feed the dolphins and everyone in our group got to participate.  Jake got to spend time with a dolphin trainer and she got the dolphin to come up on a ledge so Jake could reach and pet the dolphin.  We loved the dolphin show even though we sat in the front row and got SOAKED!  We saw the Shamu show, fed the stingrays, and went on all the rides.  The Penguin ride was a must see.

Sunday:  We got up early to be at the Magic Kingdom before they opened.  We just made it in time to see the Disney characters open the park.  We stayed there the entire day, went on just about every single ride, and watched the nighttime parade and fireworks show.  We never had to wait in a line since we were a "Wish" family and it made it possible to do everything we wanted to do.  We were given matching t-shirts from friends of ours for the trip (thank you Colleen and Chad!) and it made us feel very special.  It was such a magical day and we all loved being there.

Monday:  We were a little tired from the long day at the Magic Kingdom, so we didn't get to Disney's Animal Kingdom until after 10am.  We went straight to the Kilimanjaro Safari ride where we saw animals we had never seen in person and some we didn't know existed.  We spent a good part of the day there and then went back to the Village for a swim.  We went to the Gingerbread House for dinner and then went trick-or-treating around the Village, followed by a horse drawn hayride. 

Tuesday:  We went to Hollywood Studios and had a great time!  It was a cloudy day and the park wasn't very crowded so that made it really nice.  The first thing we did was go to the Star Tours ride and it was really fun.  It's a simulator and has lots of different stories so each time you ride won't be the same.  On our first ride Darth Vader stopped our ship and told us we had a rebel spy on board that they wanted to capture.  Jake's picture came up on the screen - he was the spy!  Later on that day we had a private meeting with Darth Vader and two Storm Troopers.  Ethan was shocked that he was meeting the real Darth Vader!  We went to the Disney Junior Live show, Indiana Jones, the Great Movie ride, Toys Story Midway Mania, and many more throughout the day. 

Wednesday:  We got up and out the door early and headed to Universal Studios for our last day at the parks.  We went straight to the Harry Potter attractions and loved how it was set up just like the movies.  Jake was too short to go on the ride which turned out to be a good thing since it was pretty intense.  He was able to go on the rides in the Jurassic Park area, Despicable Me, Shrek, Spider-man, and E.T.  and we got to meet lots of characters.

 

 That night we went to the "Castle of Miracles" at Give Kids the World Village where Jake was able to decorate a gold star.  He wanted me to write "Jakers" on it.  He then placed it in the box and the star fairy took it away.  That night she placed it on the ceiling in the Castle. 


 There are over 126,000 stars - 1 for each child who has stayed here

 

 

His star is in the circle above the door

Jake made a wish in the wishing well - he said, "I wish I was a real Superman."  Little does he know he already is.   

 Then he filled the tree with "love" and three magic pillows came out of the box to the left.  One for each kid.

We spent the rest of the night playing in the arcade and eating ice cream.  Forgot to mention that we were allowed to eat all the ice cream we wanted from 7:30am to 9:30pm! 

 

Thursday:  We checked out today and then spent some time playing mini golf.  We went over to Downtown Disney for lunch and some shopping before we left town.  Jake's Great Grandparents live in Bradenton, FL which was on the way home so we were able to stop and spend the night there. 

Friday:  We spent the morning with Great Grandpa and Aline and went to the beach for a couple hours in the afternoon.  Aline made a delicious dinner and then we were on our way home. 

We got home around 3am on Saturday.  We needed to get the rental car returned by 1pm for the official end of our vacation.  From beginning to end, we had the most amazing, once in a lifetime vacation.  Make-a-Wish, Disney, Give Kids the World, Universal, and SeaWorld made us feel like royalty.  It really felt magical and definitely unforgettable.  They made it possible for us to be together and get some closure from the journey that we have been through.  A year ago it seemed like we would never get here but now we know it's possible to heal.  Jake is healing and enjoying life. 

 

We made it.

Catching Up

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

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

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

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

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

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

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

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

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. 

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

A few things

1.  We have talked about some guys running across the country for sarcoma research...Miles2Give...well Sunday is a pretty special day for us...for them...and for Jake. You see Sunday is Jake's 4th birthday, and on that day Miles2Give will be running in Jake's honor. It's awesome that these guys are running for our hero...for our hero! But, I want us to make a difference for the future.
...
Sarcomas are the forgotten cancer...there are 40+ types and most have very little research money devoted to them. As a matter of fact last year the National Cancer Institute devoted a measly $40 million to research all of them....that's it. They have very tough protocols for treatment and some types have low survival rates.

Ewing's Sarcoma has a 10 year survival of 50%....yep....that's right....Jake has a 50% chance of making it to high school. If he had been diagnosed as metastic....that would be more like 10%. There are others....some with lower survival rates.

We can change this....by donating just a little....

Do it in Jake's honor....do it for the people that will be devastated by these cancers.....do it for those that will lose their fights this year from these monsters. We can make a difference....one dollar at a time!

2.  Here is an update about Jake's story in list form.   Just to catch anyone up who is new to our blog :)

11/5/12- A biopsy confirmed that Jake has Ewing's Sarcoma, localized to his left tibia.
2/26/13- After 6 rounds of chemotherapy, Jake had limb salvage surgery with an allograft 9 (cadaver bone)

, two plates, and fifteen screws. He is not allowed to bear weight (a.k.a. walk) for nine months. That takes us to around Thanksgiving 2013.
3/11/13- On Jake's Mom's birthday, we received the news that his tumor had 100% necrosis, meaning that chemo killed it and there was no evidence of disease in the leg.
6/7/13- A CT scan of the chest reveals no heart or lung damage from chemo, as well as no evidence of cancer!
He is projected to complete chemotherapy by September 2013.

Jake is being treated at Children's Healthcare of Atlanta, Egelston, at the AFLAC Cancer Center.

 There is a donation account set up for him under "Jacob J. Russell Donation Fund" at Wells Fargo Bank, as well as an online fundraiser at http://www.youcaring.com/medical-fundraiser/help-jake-fight-ewing-s-/49239  All fund raised are used toward travel and other treatment related expenses. 
Jake loves getting mail and can receive mail at 817 Lopez Ln, Monroe, GA 30655
Kait:
Jake is receiving chemo as I type this.  It is day 3 and he's doing great.  I found out something amazing yesterday while we were talking about riding bikes.  I said "Remember last summer you used to ride so fast down the hill on your tricycle?  Then you got sick and you haven't been able to in a while."  Jake said, "sick??"  He had a very puzzled look on his face and I realized that he doesn't even know he's sick.  I guess it never crossed his mind to question everything he has gone through, and it never occurred to him that it was because he got sick.  In some ways I am very glad about this, and I hope that cancer is just a distant memory for him.  Mostly, I am just so proud of him. 

Jake meeting Atlanta Braves pitcher, Tim Hudson

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.

The cast is off...now what?

Kait: I have been worrying about Jake's follow up appointment with the surgeon, Dr. Fletcher off and on for weeks. It's been in the back of my head and pops up here and there, like when Jake asks if he can play soccer. I am looking forward to him playing but more importantly I want him to walk. I realize I am complaining, but Jake is almost four and he's getting heavy. We have to carry him to and from the bathroom, to the table, to get dressed, basically anywhere he needs to go within the house. Maybe I'm just getting weaker. He has his little wheelchair which was designed by someone with a sense of humor. The handles for us to push are as short as the chair...back breaker! We get him to practice wheeling himself but he gets tired easily and from what I hear its not an easy thing to do.

Eleven weeks have gone by since surgery. What should we expect for the next eleven? We arrived at Jakes's appointment and first thing was to remove the cast. He started screaming and yelling "no, don't do it!" I asked if he was worried that they would cut his skin and he said yes. We explained, once again, that the saw cannot cut his skin and from then on he just watched. He cried (in pain, confusion, discomfort?) once the cast came off and refused to set his leg down on the table.

We were sent back to the waiting room to wait for x-rays next. Jake cried for Randy to carry him while holding his foot or leg in the air. I guess after having it in some sort of cast for so long it feels very strange to have it breathe. He completed the X-ray and then we waited for the surgeon to come discuss them with us. The X-rays look very similar to the ones from the day of the surgery. His two plates and fifteen screws are still in place and exactly how they were put in that day. Dr. Fletcher is concerned with two things at this point: that the plates and screws are not bent and that his growth plates are not closed. If his growth plates close for some reason then his leg would stop growing and would be cause for further surgery and decisions down the road. Thank God that both of these things are exactly how the Dr wants them to be! From the X-ray is doesn't appear that his bone is fusing with donor bone yet, which is to be expected. This type of surgery takes a very long time to heal, especially since the size of the bone they removed was so large.  I was hoping that Jake would be allowed to start weight bearing sooner than the original projection of November, but after this visit no such luck.  We go back in three months for more X-rays and hopefully then we'll see some progress.  Jake is to begin gentle physical therapy twice a week for eight weeks.  He is allowed to take off the boot to bathe and swim, but otherwise it should be on.  There is a possibility of his Achilles tendon tightening up too much without help of the boot and PT.  We were told that sometimes surgery is needed to fix the problem but not to worry about that because it is a minor surgery in comparison to what he's been through already. 

His skin is very thick and peely, but the incision looks good

We waited for Jake to be fitted with his boot and then we were headed home.  He is very happy with his boot that looks GIANT on his tiny leg :)  I feel like I did after his surgery...worried about hurting him or carrying him wrong.  I assume that in a few days I'll feel more comfortable.  Until then I'll keep faking it.  Show no fear!  

Jake is our superman.  He goes through so much and still keeps smiling.  We are so lucky to have our three wonderful children, and that through undesirable circumstances we are able to share them with the world.  We will make it through this and we'll be closer and stronger because of it. 

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