Rally for Jake (and all kids fighting cancer)

On November 5th, 2012 our lives were changed forever with the words, “There was no infection present, I’m so sorry”. This came after a biopsy confirmed our 3 year old son Jake had a rare form of cancer called Ewing’s sarcoma. We had never heard those words before, and always brushed pediatric cancer off as cute bald kids holding stuffed animals and balloons.

It wasn't our child….it wasn't our problem.

It became our problem that day, and we realized quickly just how big of a problem this was. It was far from cute bald kids that were holding teddy bears. For the next 10 months our little boy would be exposed to chemo drugs that were developed in the 1950's and 60's, multiple surgeries including an allograft to rebuild his deteriorated left tibia, countless hours of crying and screaming. He spent Christmas of that year in the hospital on a morphine pump for pain, the next Easter in the hospital, and even his 4th birthday. He was given the title “Survivor” and NED on 9/17/2013 as his scans showed him to be cancer free, which has remained the case to this day. It didn't stop our fight though, because cancer tried to take our little boy from us. It made us angry….

How can so many diseases that destroy families and take children receive so little attention from society and our leaders? How can so little be done to help our most vulnerable citizens? Why had a never seen a GOLD ribbon in my life until my son was fighting for his life when this is the number 1 disease killer of children in the United States?!?!??

I am just a dad who loves his family. I can’t cure cancer no matter how smart I may think I am….so what can I do?

I can run…..and I will. I’ll run because 5 hours of pain is absolutely nothing compared to what kids go through everyday in hospitals everywhere. I’ll run because everyday families hear the words we heard, and worse some hear “there’s nothing more we can do”. This isn't acceptable…it must change…..so I’ll run until it does.

Please donate something…anything….for Jake….for so many others….let’s be the change.

CLICK HERE TO DONATE TO RANDY'S RACE

Dear 5-year-old Jake

Dear Jake,

How in the world did five years go by so quickly? You have grown so much in the last year and it's very exciting to think about who you will be when you grow up. You have always been mature for your age and you handle the toughest things better than most grown-ups. When I think about your 4th birthday, I can't believe what a difference a year makes. You were bald, pale, and couldn't walk. Fast forward to your 5th birthday and you have a head full of hair, are healthy with sun kissed skin, and can run wild. No matter what, you always have that infectious laugh. You are adventurous, gentle, hilarious, thoughtful, and smart. 

You want to be just like your big brother, Ethan, and you are a wonderful friend to him. You often say the most random things and you make us all laugh. We were taking a walk one day and in the middle of normal conversation you asked, "But, how strong do you have to be to carry a house?" You are really into Superman, Star Wars, golf, and baseball. Your favorite movies (right now) are Tangled, Frozen, and The Lego Movie. Your favorite TV show is Paw Patrol.

 You try your best at everything and you understand that doing your best is winning. But, even if you don't win you are always a good sport. Really, your good qualities are countless but even you have your moments. You aren't mean, but you can get mad and do some screaming. It's interesting because sometimes you're just upset because you think you're in trouble and you're worried that we won't forgive you. Sweet boy, everyone makes a bad choice now and then, even my perfect boy, and we will always forgive you.

 You start kindergarten this Fall and you are counting down the days. I hope you're excitement for learning never fades. Happy 5th birthday, Jakers. You will always be my "littlest" boy.

Love, Mommy

Walking along and...Slap!

Kait:
We're moving along in life, enjoying a beautiful day and, believe it or not, the fact that Jake had cancer is fading to the background.  Can it be possible to not think about cancer every second of every day?  Well, apparently it is possible to move forward with everyday tasks and activities.  We can actually go out in public without being stared at with "sad eyes".  Like today for instance, the kids are out of school for President's Day so we slept in, ate breakfast, and played a little.  Jake had a physical therapy appointment at 11am and we grabbed some lunch after at a new Mexican restaurant in town.  It's just me and the three kids since Randy, unfortunately, did not get the day off school.  Our kids are 2, 4, and 6 years old so you can imagine we are like a traveling circus everywhere we go.  Aubrey refused to sit in the highchair so a good compromise was to let her sit next to me in the booth.  To her this means jumping up and down and singing at the top of her lungs.  Jake ordered chicken nuggets...yes, at the Mexican restaurant.  He refuses to touch them and proceeds to eat cheese dip likes its water.  Ethan, the oldest, inhales eats his taco like a good boy.  In the midst of normal conversation, Ethan says, "Well, it's almost time for Jake to go to the hospital again.  The doctor said he has to go back every three months and March will be three months since he's been."  And there cancer goes, slapping me in the face again.  Yes, Jake is due for his six month post treatment scans on March 6, 2014, this is not news to me.  However, it is shocking to me that a six year old would be keeping track of this.  Instead of thinking about the next holiday or birthday he is thinking about his brother having to go to the hospital.  It makes me so mad that cancer keeps rearing its ugly head.  I want to scream, "Get out of our lives!  Get our of our minds!  You are not welcome here."  People tell me that it gets easier as time goes by, but I honestly feel that cancer will always be a part of our lives in one way or another.  I hope that eventually I will not be so emotional about it.  As of now everything I see about childhood cancer brings me to tears.  Doesn't matter if it's good, like a Make-a-Wish being granted or bad, like a child dying.  Everything that has to do with cancer is emotional.  Cancer is so evil, I can actually imagine it having a face with a look of malice.  Always trying to cause pain. 

Anyway, I have to get over the fact that I can't protect my kids from everything.  It's probably best to involve Ethan in Jake's appointments rather than hoping he'll be in ignorant bliss.  Obviously, he knows what's up and he is far from ignorant.  As far as Jake's healing progress, he is doing amazingly well.  We saw his surgeon on 2/4/14 and he was so pleased.  He said that we couldn't ask for better and that Jake is free to do any activities he would like.   He can be an active little boy again!  Jake's tibia has grown enough on both ends that if he were to break a screw or have a complication, the Dr would be able to fix it.  We know that there's a good chance Jake might break something in that leg someday and we are okay with it.  We refuse to limit him - we will never tell him "you can't" when he's been given this second chance at life.  At physical therapy, his wonderful PTs have been working hard to help Jake walk straight and without a limp.  He is gaining strength and is really starting to trust his left leg.  When he walks slowly you wouldn't even know that he had major surgery. 

[Click below to see a video of Jake walking.]

Post by Jake's fight against Ewing's sarcoma.

Randy is going to run his first marathon in March and is raising money in Jake's name for the Rally Foundation for childhood cancer research.  If you have even a dollar to spare, would you consider donating?

https://www.rallyfoundation.org/run/half-marathon-training/publix-georgia-half-marathon-marathon/rally-for-jake-randy-Russell
 

I am very thankful for where we are in life, but, most of the time it is hard to believe that this is our life.  I was thinking the other day that I wish I could go back to when Ethan was a baby so I could know what it felt like to hold him once again.  Then I thought to myself, would I be willing to relive the past year and a half just to experience holding my first born again?  God forgive me, but nothing would be worth going through cancer treatment again.  N.o.t.h.i.n.g. 

I know that there will be times like today where cancer and Jake's journey will jump to the forefront of my mind.  I will accept whatever comes our way, help others as we can, raise awareness for childhood cancer, and thank God every single day that our traveling circus is as noisy as ever. 

Make-a-wish Trip

 



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

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

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

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

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

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

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

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

 

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


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

 

 

His star is in the circle above the door

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

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

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

 

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

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

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

 

We made it.

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.

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....

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:

A piece written for Jonathan Agin, CKN Editor

Fundraising and Advocacy

Randy:

Before November 5th, 2012 childhood cancer wasn’t on my radar, or anywhere close to the front of my mind.  That morning it all changed when our son was diagnosed with Ewing’s Sarcoma.  We went through all of the normal (if there is such a thing) thoughts and feelings that anyone else would in that situation.  They were all present; from denial to acceptance, grief to feeling numb, and helplessness to anger.  As we started to settle down it was natural to do some reading.  Now I want to be clear that we tried to avoid reading about survival rates and prognosis, more about the community in general.  The internet is a dangerous place where you can read not only anything you want to see, but anything you DON’T want to see as well.

We started to learn about the world of childhood cancer, and its extreme lack of funding.  We realized that our government will spend more annually on aid to Bangladesh than on all childhood cancers combined here at home.  Learning how archaic the treatments are, and that the real advances come in administering existing medications more effectively, rarely in new drugs being introduced.  Some childhood cancers have little to no treatment at all, and some have absolutely zero drugs that have been developed for them, just some others that seem to work a little.  These things left us with a burning question:

“What can we do to change this?”

Anytime you tackle awareness on an issue you need an audience.  If you don’t have an audience that is somehow tied to your cause the attention will be minimal.  If you have a child diagnosed with cancer, your audience is your friends, coworkers, relatives, church members, bowling league, customers, and anyone else you contact on a regular basis, and if they know you, they are captive.  Now I’m not saying you should grab every person you know and tell them to donate money to a cause (you would find yourself with fewer friends), what I am saying is that if you choose to walk this path, you can make an impact by just telling your story.

Advocacy is simply defined as public support or recommendation of a cause or policy (credit: dictionary.com).  By simply telling your story and putting them in contact with people that can make a difference, you are advocating.  Everyone’s level of involvement will be different.  I personally found it my battle cry and have tried to make a difference whenever possible.  I have used it as an outlet for my frustration with the situation, and every dollar I raise helps me feel that we are one more tick closer to ending this fight.  Other people are less comfortable and just dealing with their child’s sickness can be enough to keep their plate more than full, and there is NOTHING wrong with that.  You have to choose the level of involvement that suits your lifestyle and comfort level.  The last thing you want to do when dealing with the Super Bowl of family crisis is to add more to your plate than you can handle.  If you do choose to pick up a sword and join the fight, the best weapon you have is your honesty and your story.  I think people too often think about cute bald kids that are happy and smiling when they think of childhood cancers.  They don’t know the horrors that those of us that have lived it have seen the REAL world of childhood cancer.  By telling your story through social media and being open with people that ask, you can be the voice that raises awareness.  

I can’t stress enough though that this has to be what is best for you and more importantly, your family, and everyone has to be on board.  My wife was a little slower to pick up a sword and join the fight, and at no point did I ever think less of her or think she was doing anything wrong.  Everyone will deal with an emotional trauma like this in different ways, and most of those ways are totally acceptable.  There is a great network of parents out there that can help, don’t be afraid to ask.  If you’re new to this, we have stood in your spot and felt how you feel.  We are taught as adults to be autonomous and handle things internally (especially men), but this is a road that you almost can’t walk alone.  Don’t be afraid to ask for advice, and if you’re up to it, pick up a sword and join the fight.

Countdown

Kait: Jake's doing great. The past treatment reminds me of his first treatment. Very little side effects, still playing and eating. Don't get me wrong, I've been loving having my sweetie pie laugh and be himself, but I always have the worry in the back of my mind. My mom came today which means that we will be in the hospital for 5 days straight. I dread telling him that we have to go...hearing him scream "no" as I put his EMLA (numbing) cream on his port. He will cry at least part of the way there and then scream again before the finger prick. He will need to be held down, like in the beginning, when they access his port. He has regressed a little in his bravery since the break from chemo. Including this treatment he has 10 left, so I assume he'll get used to it again. I wish he didn't have to get used to it! I don't know why, but I am more emotional now than I have ever been along this journey. I noticed today that his hair is getting even thinner and his eyebrows are almost gone. Soon people will know right off the bat that he has cancer and I won't get the chance to bypass the questions of passerby's once in a while. I contradict myself quite a bit on this subject and I assume it depends on my mood.  Sometimes I sort of wish that I could just grocery shop in peace, without the stares.  Other times I welcome the chance to talk about it.  People ask "Did he break his leg?" I say "No, he had a bone tumor that had to be removed." I am not afraid to tell people about his diagnosis, but when it is with someone I've never met it turns into a long conversation about how we found it, what the surgery was like, and believe it or not, is he going to be okay? What are things not to ask the mom of a cancer patient for $1000, Alex? I know that people care and are curious, but it would be nice not to ask a mom if their son is going to live. The reality is that I know I have to be open and welcome questions so that people (like us) can see that cancer happens to kids and normal families that live in their town. 

I know that Jake has a really decent shot at beating this. So what is my problem? Well, one of my problems is that I read things on Facebook too much. There are a few pages that I have "liked" that pop up on my feed and they are doing an amazing job of raising awareness. So today one of them is about a teenage boy diagnosed with the same thing as Jake. I think, "Oh, good this will be nice to read." I get to the end of the paragraph and the story concludes with funeral arrangements, or he got his wings, or he lost his fight. These stories are posted daily...and it hurts. I don't even know these people but it hurts to read it. That's why I always have it in the back of my mind that our son could succumb to the same evil. I pray and I hope and I wish constantly that this will not be the case. I remain positive and it's so hard to describe to someone who hasn't had a relative with cancer. But, believe me, it is just so depressing, all the time.  From what I have found from other parent's experiences is that the fear and anxiety is always there, but once you get to the 5 year mark you can start to breath a little easier.

I had a break down last week because I felt inadequate compared to my husband. Trust me, he assures me otherwise. He has yet to blog about it, but he did an amazing job raising money and awareness for both a St. Baldrick's event and The Rally Foundation, and ran his first half marathon besides. Proud doesn't begin to describe how we all feel. I feel like a terrible person putting this out in the open, but I felt like I'm not doing enough and I let my insecurities overshadow the good Randy is doing. (Sorry Randy) This isn't about me, but as a Mom you want to fix everything for your children and I can't fix this for him. All I can do is walk to path with him and help the best I can.  Sometimes that translates to me feeling helpless.  I have found that all of my emotions are heightened, including the ones I'm told are ridiculous. I guess it was time for my biweekly emotional breakdown. ;)

Logistics and treatment-wise, this is what we have coming up: Jake will have two 5-day treatments in a row (admit on 3/28 and 4/11) and then two 2-day treatments in a row (admit on 4/25 and 5/9) provided there are no setbacks. He will then resume alternating between 5 and 2 day treatments until he has completed all 17. Let the countdown begin!

Here is Randy's speech from the Rally Foundation's pasta dinner:

 

 

Dear Jake

Kait:
Dear Jake,
  You are amazing.  You are awe-inspiring and wonderful and adorable and bewildering all at the same time.  It has been 23 weeks and 2 days since your first x-ray, and since you have had 6 rounds of inpatient chemotherapy, 3 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 2 echocardiograms, 2 more 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 13 times.  At the beginning I thought that having an MRI was a big deal and, thanks to cancer, an MRI is now a walk in the park.  We keep wondering why you were chosen to have cancer.  I say it's because your wonderfulness is going to change the world.  You are so easy going and accepting.  You went to sleep one day and woke up with a huge bandage on your leg, yet you didn't question it.  You trusted us when we said the doctors fixed your boo-boo and then you asked to watch cartoons.  Jake, you are so smart, sweet, lovable, and hilarious.  Your laugh makes me burst with a laughter of my own.  While you are perfect in my eyes, remember that no one is perfect by the definition of the word.  Perfection is boring and you, my sweet pea, are always full of surprises.  You can be quick to anger and can throw magical tantrums.  I have to keep reminding myself that you are still only 3 because you are so mature and strong.  You are someone to be looked up to and you have taught me so much. 

"I'll love you forever, I'll like you for always.  As long as I'm living, my baby you'll be." Robert Munsch

Mommy

Prelude to the letter above:
I wrote a letter to each of my boys before Aubrey was born last year and I plan to write one to them every year around their birthdays.  Every word means even more to me now, and I want nothing more than to write these letters for years and years to come.  Here is what I wrote to Jake last year:

Dear Jake (age 2 1/2),
  You are my sweetie pie in every way!  I love getting to see your personality grow as you have become a little person.  You have a voice and something to say and you deserve to be heard.  I am amazed at how smart you are, independent, courageous, hilarious, and sweet.  You are going to grow up to be an incredible person and I am so proud to be your Mommy.  I love you so much and I love spending time with you.  You must always remember that I love you no matter what and always will.  You are my littlest boy no matter how big you grow.  I know your childhood will pass by in the blink of an eye for me, but I hope you (and I) will enjoy every minute that we spend together.  It's hard to say that I can't wait to see who you become because the truth is that I want you to be my little boy for as long as possible.  I love you so much.

Mommy

Fun fact: Jake weighed 12lbs, 7 ounces and was 22.5 inches when he was born!

 

Open up your heart

Randy:
I come home smiling because Jake's appointment went well, and then I get on Facebook...one of the first things I get on here and read is of another child that has been treated in the same rooms as Jake at Egleston being told the unthinkable... "There is nothing more we can do" Silas is 4 years old...

This happens to real people...every single day....WE CAN HELP STOP THIS!!! Please do what you can to contribute....between 2 bowling balls and 4 leagues we have raised $3,500 for research....all together we as a team have raised $6,100 since November. I can't thank everyone enough for all of the support so far....

We're not done though... I type this with tears running down my cheeks for Silas' parents, and his family. He is Jake's age....and they have given him no more than 6 months. Imagine that for one second...just try to....imagine hearing those words. I can....it makes my heart literally hurt...it makes my throat swell....it makes my eyes burn. There are young children being taken...7 per day...every day. Today 46 families will be told the 4 words that destroyed our world, "Your baby has cancer". Let's stop giving cancer the last word. Let's work together and stop this from happening. Give $1...$5...something. No amount is too small. Give your time...your hair...your heart.

This Saturday I am dying my hair yellow and having it cut into a mohawk. Am I doing this for attention...you bet. I want people to ask me why I look like an idiot....I want to tell them about Silas....Jessie Rees....Anna Basso...Ashley Davis...Aiden...Matt Hobby...and the 2,800 children that will lose their fight this year.

"If it's miles we have to go, then it's miles we have to give" - Landon L Cooper

http://www.stbaldricks.org/participants/mypage/580686/2013

Recovery with a side of...

Kait:  As Randy mentioned in the last post, Jake has done amazingly well since surgery.  Honestly, it is unbelievable that he is doing so well.  I know I shouldn't be that surprised since he is an amazing little boy.  Today marks once week from surgery and he only complains when it's almost time for pain medicine (lortab) or if we jostle him a little too much when carrying him.  The hardest thing so far is going to the bathroom, so I think we're doing pretty well.

He has his post-op appointment with one of his surgeons on 3/13 and as long as he clears Jake to resume chemo then we'll be back at Egelston for a two day treatment on 3/14.  We have to keep going and keep beating this cancer down.  I know that, but I really don't want to go.  Ethan doesn't want Jake to go either.  He said "If the tumor is gone why does he have to keep going to the hospital?"  It's a perfectly reasonable question and the answer is "because he has to."  We have to finish the course of treatment if we have any hope of beating this.  So now he has to keep getting chemo and the side effects and he can't walk.   In case we haven't mentioned before, his surgeon said that he can't walk on that leg for 9 months.  No need to go back, you read that right.  Essentially he should be done with chemo before he can walk.  The hard part will be convincing him and keeping him from walking when his leg doesn't hurt any more.  I feel bad for complaining because I know that some kids who have had cancer never walk again.  I am more than thankful that he will.

 I definitely think that Jake is handling all of this way better than the rest of us.  He went to sleep on 2/26 and woke up not being able to walk and in a ton a pain.  Yet, he accepts this and doesn't even question it.  I, however, feel like a wreck.  I bottled up my emotions on the day of surgery so that Jake wouldn't ask me what was wrong.  Then I kept them securely tucked away while I cared for him in the hospital.  Finally, a few days later I began to feel run down, depressed, and emotional.  I should have just let it all out that day. 

This next little bit may not be for those of you with weak stomachs, or who are eating right now.  Let this be a warning ;)  Jake- I apologize as this will embarrass you some day.

August 2011:  We had just gotten on the road to head home from Orlando after a wonderful vacation when it started to rain one of those rains that requires the wipers on full blast and looks like its coming from the ground as much as from the sky.  Jake says, "I need to go poopy."  Randy and I look at each other, out the windshield, and back again.  There are no gas stations in site and only fields on either side of us (more like swamps now).  Jake was not even 2 and a half yet so we still put him in pull-ups for long car rides in case he fell asleep.  Basically, Randy and I ignored his request to go to the bathroom since there was nowhere to stop.  A pungent aroma filled the car and we knew the deed was done.  Hurry up nearest gas station...we need to stop.  I volunteered to change the pull-up so I grabbed Jake and scurried into the gas station, which turned out to be a lovely truck stop complete with a Dunkin Donuts.  Into the women's room we went.  No sooner did we get in did I notice a wetness on my stomach and a glance in the mirror confirmed that this would be no ordinary clean up.  Let me mention here that I didn't bring the wipes in.  Stupid!  Ok, no problem.  I grabbed some paper towels and stood him up in the sink, pulled his shorts down which smeared the mess all the way to his socks.  I pulled up his shirt and found more smear up to his arm pits.  Shirt, shorts, and socks- in the trash.  This awesome terrible restroom had the tiniest sinks known to man and poor Jake was standing in it while I tried to splash water up to clean away the mess.  To make matters worse, a cleaning woman comes in and proceeds to stand about 10 feet away watching me.  Just watching.  Take a picture, lady!  Finally she offers me a rag and then resumes rubbernecking.    I guess she just couldn't turn away and needed to see how this one played out.  Forgot to mention that Jake is crying the whole time.  After about 20 minutes I come out of the bathroom with Jake in nothing but a clean pull-up.  Randy had come in with Ethan and says, "do you want a donut?"  No, I don't want a freaking donut!  I want a clean shirt.  In the pouring rain I change my shirt at the trunk of the car and then dispose of my poop shirt.  We all pile in.  Randy: "I heard screaming, what happened?"  Me: "Bad things." 

The funny thing is that we should have known something like that would happen.  Jake has always been "the man" when it comes to pooping, in fact one of his nicknames was "Pooperton."  That dude was a flatulence machine as well.  This brings us to the reason I am recalling this story.  After Jake had mucusitis the first time, he had bad sores that caused severe pain when he needed to poop.  The memory of this has been seared into his brain and continues to cause him trouble.  Although it doesn't hurt anymore, he still thinks it's going to and because of this he holds it for days and days and days.  He held it so long that he could no longer sit upright and we had to take him to the hospital back at the beginning of February.  He is on Miralax daily to keep things moving.  Now picture the story I told before and add a little over a year to it (present day).  Dejavu, except that I have to cut his pants off so that I don't smear it all over the dressing on his leg.  Anyone sell break away pants for a three year old?  Sorry Jake, I just had to get this in writing even though I know you will kill me for it. 

We had our first outing this morning with the wheelchair to visit Jake's school.  I wanted to try it while my Mom is still here so I could leave Aubrey at home.  Everything was going fine until we got down the road and had to come back home for a cut-off-the-pants clean up.  Add 30 minutes and we were back on the road- take 2.  At his classroom he was surrounded by all of his friends and he was very happy to have the attention.  We stayed long enough to do an activity and then came home for lunch.  I would say it was a successful trip, all in all.  This Saturday we have an appointment with the Make-a-wish foundation where Jake will start the process and tell them what his wish is.  His wish is to ride Mickey's train at Disney World.  What a fun trip that would be! 

Thanks to everyone around the world who is following Jake's fight. 

We can feel the love ♥

The Big Day

Randy:  As scheduled Jake had his surgery on Tuesday the 26th.  To say Kait and I were carrying a little bit of anxiety leading into it would have been an understatement.  Our little boy was going to have major surgery, where his lower left leg would basically be taken apart and put back together.  He wouldn't be able to walk for months, not even consciously thinking about the fact that his chemo would start right back up in 2 weeks.  Either way this is the biggest hurdle in our journey and a necessary step to get to the end.

We arrived at the hospital at 11:30 for our noon appointment and were pretty quickly checked in.  They told us he was scheduled to have his surgery at 2pm and that everything was on time.  His surgeon (Dr. Oskouei) came in and explained the procedure and that his part (removing the cancerous bone) would be quick and only take 30 minutes or so, Dr. Fletcher (Pediatric Orthopedic surgeon) would be responsible for putting the cadaver bone in and fastening it with the plate and screws.  This would take upwards of 2 hours so we expected this whole thing to be over with by 5pm.  We did ask about the cadaver bone, and it was from a female adult in the midwest.  The surgeon said it was actually a pretty close fit size wise.  One funny note from this was the name of the procedure they performed was an allograft, however the nurses and doctors kept calling it a "limb salvage procedure".  We all kind of agreed that we didn't like that name and "allograft" sounded much less intimidating.

Around 2pm Jake was given Versed, which is a heavy anti-anxiety medicine that makes him loopy and forget everything that happens.  They give him this before taking him back so he doesn't freak out, as they don't fully sedate him until he is in the operating room.  Around 2:30 they rolled him back and we started the waiting process....

and we waited....

and waited....

and waited....

It would have been much less comforting if the operating room nurse didn't call and give us a couple of updates, because we didn't speak to Dr. Oskouei until almost 4:30.  He told us everything went great and that he started Dr. Fletcher's portion before leaving.  We were thinking another hour or so and he would be done....

but we waited some more....

Dr. Fletcher came out to talk to us just after 6:30 and informed us everything had gone well.  He told us what to expect when we saw him and eventually took him home.  He won't be able to walk for months (as many as 9), and any weight placed on it in the first few months could jeopardize the entire procedure as the plate the holds the bone together is VERY thin.  We were told to expect to be able to see him in around 30 minutes, and so we waited some more (that was the them that day).  After an hour or so the recovery room nurse called to say that he was stable but had a slight fever and some issues with pain.  They were going to keep him a little longer but we could go up to his room and wait.

and we waited some more....

and waited....

Finally around 10pm they rolled our little man in and he immediately informed us of the nurses spoiling him with apple juice drink after apple juice drink :)  He was in great spirits considering the level of discomfort he was in.  The first night was a bit rough as he didn't get any Lortab until around 3am, and so his only relief from pain came from a patient controlled morphine pump.  It was set to be able to be pushed every 7 minutes, which was great....except when we tried to sleep.  As the night and next day went along we were able to manage his pain and he started making great progress.  We were told he would be in the hospital for 4 days, so we expected to come home Friday or Saturday, however the doctors said he was recovering so well that they discharged him on Thursday.

We are still adjusting to our new lives at home.  The next few weeks will be very challenging until Jake can learn how to move himself around a bit.  He has a wheelchair and a walker, but will have to learn how to transfer himself from a chair to them.  First he has to get his pain down, which will take a little bit.  We're just glad this went as well as it did, and thank everyone for keeping us in your thoughts.

Hiatus

Kait:  I want to preface this post by saying that Jake has been doing really well.  We've had a lot of fun together during his hiatus from chemo, and Jake's personality has returned.  He has a loud cackle that makes everyone in the room laugh too.  His infectious smile is on display most of the time and his appetite has returned full force.  We took the family to the Big Apple circus, LEGOLAND, mini-golfing, the mall, horseback riding, golfing, the playground, Chuck E. Cheese's, and Toys R Us.  Basically, anything they wanted to do, we did.  Don't get me wrong, we had a ton of fun, but, there was no way to keep the sad thoughts from creeping in.  The elephant was always sitting in the corner telling us not to get too comfortable.  I would see him laughing and think "in a few days he is going to be in pain again."  I would see other healthy children playing and feel sad that Jake wasn't able to play to the fullest because he is tired, or just doesn't feel like himself.  This week gave us a small glimpse at how life will be after he completes chemo and we hate that he has to jump right back in just 16 days after surgery, after he has had a taste of life without constant pain, medicine, and doctors.
I am nervous about his surgery.  I am afraid to tell him what is going to happen because he knows enough now to not want to go to the hospital no matter what it's for.  I took both Ethan and Jake to his clinic appointment last Thursday and Ethan spent time talking with Layne (the child life specialist) while Jake got his blood counts checked.  Layne explained the surgery to Ethan and made him feel involved and special.  Jake's counts were perfect, confirming that his surgery will go as scheduled on 2/26/13. 
  I wanted to explain Jake's surgery in case anyone is wondering.  His surgeon said that he is an excellent candidate for an allograft which is the replacement of a bone with a cadaver bone.  Jake's tumor is very big- it is almost the size of his entire left tibia.  Thank God, it doesn't effect either growth plate.  The surgeon will make an incision from just below his knee down to above his ankle and remove the tumor.  The tumor is his tibia from below the top growth plate to about an inch above his bottom growth plate.  Like I said, it is big.  The surgeon has to remove a lot to be sure to get a good amount of healthy bone and tissue surrounding as well.  This is called removing with good margins and is important for removing tumors.  He will then place a tibia from a cadaver in the empty space and secure it with plates and screws.  He'll stitch him back up and be off to recovery.  We won't know if he'll be just bandaged or in a cast until he comes out of surgery because it will depend on how secure they are able to make the new bone.  The whole surgery should only take about two hours since he is so small.  He will be in a wheel chair for several weeks until he is cleared to start some weight bearing, but it will be nine months before the bone is heeled completely.  His tibia will continue to grow as normal because bones grow from the growth plates out. 
 
Something that I haven't spent much time thinking about is the cadaver.  It's been in the back of my mind ever since we were told he would be getting this surgery, but I haven't confronted my feelings on it before.  I know that it is possible for Jake to get a new bone because another child died and his or her parents consented for their child to be an organ donor.  A pair of broken hearts have generously given a priceless gift so that my baby will be able to walk and run and play for the rest of his life.  No one and I mean NO ONE wants to consider that they may be in the position to make that decision...ever.  But, I now know what our decision would be.  Sigh...every single piece of this journey is so hard and painful, stressful and depressing.  I am trying so hard to be strong and keep it together.  I try not to think too hard about things because all I need is a little crack and I'll fall to pieces.  I hate hearing my little boy cry and I know that is my future for the next step.  Yet, this step is absolutely necessary for his recovery.  I just want it done with so I can know what to expect and can take care of him without the mystery of how our life will be post-surgery. 

I talk about Ethan and Aubrey a little bit but a lot of people have been asking how they are doing so I thought I would share a little bit.  Ethan was nicknamed the "class encyclopedia" in his pre-K class and he still loves to share information.  He is so sweet, smart, and funny, and he has a heart of gold.  I call him my angel.  I'm not sure if it's because he's five or because his little brother has cancer, but Ethan has been acting out.  He has been very angry with me and he hates when I have to be in the hospital with Jake.  He calls me several times a day asking me to come home.  How do I explain to a five year old that Jake needs me just a tiny bit more?  I feel like a terrible mom for even saying that because I know Ethan needs me too.  When I am home I spend extra time with him and shower him with love and attention but he still has outbursts and I've found that he just needs a good cry now and then.  Don't we all. 

Thankfully, Aubrey is not old enough to know what's going on.  She doesn't cry when I leave but she is very happy to see me when I am home again.  My Mom (Grams) takes care of her when Jake is in the hospital during the 5 day stays so I don't have to worry about her or Ethan.   I have no idea what I would do without her and am so thankful that my Dad insists that she come even though it means that he is alone for a week at a time.  I say it a lot, but if we didn't have the support from our family and friends that we have this would be next to impossible.  

As I type this, Randy tells me that Ethan said he is sad that Jake has to go back to the hospital.  He doesn't want him to have to go anymore and he misses him.  I am mad that he has to go through this and honestly it's just not fair, and the phrase "no one said life would be fair," is bullshit.  Telling myself that doesn't make it hurt any less.  I wanted to be a Mom my whole life and I have the three beautiful children that I always dreamed of.  Cancer wasn't supposed to be a part of it.  I think positively 99% of the time but there is that 1% of my brain that lets a thought in that cracks my shell.  What if he doesn't beat this?  I know, I know, I know, that he has to beat this but I can't help but let that thought in once in a while.  If I never had those thoughts I would not be human. And, because I can't imagine life without Jake, it gives me the drive to fight the cancer even harder.

Hug your kids a little tighter tonight. 

The Roller Coaster

Randy:  Saturday started our first day of our short time of "normal" with Jake.  We went to the mall and played mini golf, ate dinner, and let the boys ride the train.  We got up Sunday morning and went to the Big Apple Circus, where the kids had a blast.  After that we went down to Phipps and Legoland Discovery, which Ethan had been asking about almost daily since he learned it existed.  When we arrived we were disappointed to learn that all tickets for the day had been sold, but Kait spoke with the manager and explained our situation, and an exception was made.  I can't thank the manager there enough for allowing us to go through anyway, it would have really ruined the day.  The kids had a great time playing with the build a race car lego area and we left for dinner at On the Border.  

I try to remain positive and hide any fears or anxiety I may have.  Between school, the shop, and this I really don't have time to get too focused on one thing for a while.  Tonight as we kept the circus under control at dinner I began to come to the realization that Jake wasn't going to just go back to the way he was.  All day he was quiet, shy, almost scared to have much fun.  Sure he did some laughing, but not the way he did before November 5th.  As I watched him eat dinner and noticed the people staring around the restaurant, I realized that this next 10 days was as normal as it would get for the next year.  Our lives pre-November 5th were completely gone, and we would never know that life again.

It really got me bummed, and I took it out on Kait on the way home as we had a pretty nasty spat.
We spent the last 30 minutes of the drive in silence while the kids slept in the back of the van.  I had this numb sort of anger going through me, and I couldn't pinpoint why.  As we approached the house I realized that I was wrong and apologized (way too late, but I at least made the effort).  I took my own emotions that I couldn't get out and turned them into a fight with the one person that always has my back.  The reality of what is happening is...

I am mad.

I am tired of being a sideshow when we're in public.
I am tired of seeing parents treat their children like shit.
I am tired of seeing parents act like their children are a burden.
I am tired of not knowing who Jake is day to day.
I am tired of seeing this take its toll on Ethan and seeing him act out.
I want my little boy back, and to be "normal" again.

We got home as we got them out of the car it hit me...all of it...I wasn't even able to get the kids out of the car before it got me.  I had to walk away and as I stepped out of our garage and around the house it came over me like a tsunami.  Hurt...anger...fear....all rolled into one.

I cried for 15 minutes, uncontrollably.  I went to my knees in the grass and almost threw up.  It just kept coming.  I couldn't turn it off no matter how hard I tried.  I finally got it together and came inside and as I got Ethan into bed he had a weird look on his face.  I asked him what was wrong and he said "nothing".  I told him that it looked like something was on his mind and he reached up, hugged me and whispered in my ear, "Daddy, I just love you so much."

How does a 5 year old come up with that, at that moment?  He had been fast asleep as I unloaded the contents of my mind in the grass outside of the garage....how could he tell that something was wrong?  Of course after choking out, "I love you too," I left the room and buried my head in Kait's shoulder, and after another 10 minutes of bawling my eyes out again I think I finally "got it out".  Admitting this on a blog to friends and complete strangers seems a little strange.  In one day I experienced excitement, joy, pride, anger, frustration, remorse, and sorrow.

Maybe this is what "normal" is now?