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!

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. 

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.