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