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!

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. 

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:

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!

 

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. 

Hope

Kait: After a very long wait for Jake's PET scan on 2/4, he was discharged from the hospital, so Randy brought him home. We immediately piled into the car to go to Wendy's where the fundraiser was being held for us. We drove up and saw the sign with Jake's name on it and and we were excited for him to be feeling well so he could enjoy the night. We had a great time and had some delicious food!

Jake's oncologist reviewed his PET scan with Randy and he was very pleased with the results. The tumor is no longer lighting up on the scan like it was before. This means the chemotherapy is working. It's one thing to hear it but it's another to see the proof! We are very excited from this news and hope to continue on the path to recovery.

Jake went to school the next day but didn't feel up to going on Wednesday. He started feeling a little sluggish but not too bad. Friday afternoon he started running a little bit of a temperature but not enough to warrant a call to the hospital. He slept terribly that night and I was worried so I took him to the ER at Egelston to be checked out. They did an X-ray of his belly because he was complaining of pain and they found that he had a large amount of poop built up causing his intestines to distend. He was admitted and they started him on lactulose and an antibiotic (just in case). It was discovered that he also had a urinary tract infection. He spiked a fever that night and whenever that happens he has to stay in the hospital for a few more days. Plus his red blood counts went down overnight so he is getting a transfusion today. Ugh. I really didn't want to be here! So now it's Sunday and nothing has changed, except that he hasn't had a fever again. He can't be discharged until he is fever free for 24 hours, his white blood counts go up at a significant rate, and his blood cultures remain negative for bacteria for 72 hours. The white blood counts can jump miraculously overnight but the other two things we have to wait and see.

Randy took Ethan and Aubrey to the circus today and we found out that they will exchange the remaining two tickets for a different show date! Depending on how things go we may go to the circus next weekend instead. We also have a lot of things planned to do once jake is feeling better. The kids are going to choose whatever fun activities they want and we are going to spend a lot of time together before Jake's surgery on the 26th. My emotions have been going up and down lately even though we got the news of his chemo working. Don't get me wrong, it is good news, but I just want to be done with this. I want it to be gone and I want to close the door on this chapter. Unfortunately, this chapter will never be completely finished because once you have cancer you don't ever forget. There will always be follow up scans to worry about and long term effects of treatment that we won't know until he gets older.

This is really a pessimistic thing, but I saw it on Facebook today and I wanted to quote it because I have been all too guilty of it. If you have been guilty too, don't feel bad, just get even. Help us make a difference!

"What, children with cancer? I'd rather just turn my head the other way and pretend that doesn't really happen, said way too many people."

Up and Downs

Kait:  After my last post, Jake continued to be in pain from the mucositis so I called his nurse to see if we could take him to a hospital closer to home and get his blood counts checked.  I took him first thing on Wednesday morning and the results were what we suspected- very low.  So low that he actually needed to get a transfusion rather than get chemo the next day.  I must have called his nurse, Nan, 6 times throughout the day trying to figure out if I should take him that day instead of waiting until Thursday, but, in the end decided to wait it out.  Once again our plans were being changed and we had to roll with it because there is no other choice.  I was disappointed that he wouldn't be able to stay on track for his chemo and worried that he wouldn't be able to go to the Big Apple Circus on the 10th.  We had bought tickets and were hoping to surprise the kids.  I keep telling myself to go with the flow, but as I had told Randy, I wasn't feeling very good, kind of down.  I was tired of Jake not feeling good.  I had spent every minute trying to do what the doctors and nurses told me to do to prevent mucositis, which is to keep him hydrated and try to get him to eat.  The more he eats the faster his counts recover, and the more hydrated he is the better his G.I. tract will feel.  As I type it out it doesn't seem like it would be that emotionally exhausting, but it really is.  It is just awful to have your child be in pain and you are helpless to fix it. 

Even though his counts were low, I thought he might be recovering because he said he was hungry and was asking for food.  Arby's roast beef, specifically.  Our nearest Arby's is about 15 minutes away but I am always willing to get him what he wants.  Especially when he hasn't been eating much.  I got the sandwich and was on the way to Sonic for a slush drink when he started screaming about it hurting to eat it.  Before I could pull over he had balled up the sandwich and shaken it back and forth before throwing it on the floor.  We have an old minivan with bench seats and I can promise you that there are pieces of bread and beef in every square inch of it now.  Although I am not a fan of cleaning up food crumbs all over the car, I am glad that this incident happened.  I finally realized that Jake was not just in pain, but he was angry.  He was hungry and wanted to eat that sandwich and he couldn't.  He was mad.  Once I asked him if he was mad he calmed down.  His emotion was understood and validated and I think it made him feel a little better.  After that we worked together- me breaking off little pieces of food and him placing them on his tongue.  This allowed him to avoid having to bite into it and hurt his gums.  It makes me sad that he is having to spend this year of his life learning about himself and growing up while fighting cancer.  He has been transitioning from toddler to kid for a while now.  It just sucks that he learns how to vocalize anger from these experiences rather than something normal like having a toy taken from him at school. 

I took him the next morning, his scheduled chemo day, to get the blood his body needed to feel better quicker.  The low counts were making his heart work harder and made him feel tired and week.  The nurse took a blood sample to check his counts and went ahead and accessed his port.  He is getting so much better with that, it is amazing.  Now I don't have to hold him down at all.  He still cries and screams but he knows to hold still.  He has recently told us that he doesn't like to be held down when getting his daily shot and afterwards he tells us that he is very brave and that he did a great job.  His blood count results came back and we were shocked to see that they had gone from 900 to over 4000 overnight.  It is incredible what medicine, prayer, and the miracle of the human body can accomplish.  Instead of all of our schedules being turned upside down we were back on track for chemo and to be admitted that day.  He did still need a transfusion but that didn't effect the parts of his blood that are count specific for receiving chemo.  Jake has spent the past few days at the hospital getting his daily chemo and doing an excellent job eating and playing.  He had an echocardiogram which showed that his heart is doing great.  He is scheduled for a PET/CT scan tomorrow morning and we will pray for it to be clear once again.  Tomorrow night the Wendy's in Grayson is having a fundraiser for our family and we are excited to be able to be there to see friends and meet new ones. 

I wanted to end this post with a request for you to look through this website: https://www.1million4anna.org/  or at least watch this video about Anna:


I have been aware that funding for pediatric cancer research is very low since we found out that Jake has cancer.  Until reading through Anna's page I had never been angry about it.  Now I am.  I am angry that these beautiful children are suffering, fighting, and in a lot of cases, dying because the scientists are not receiving the funding that they need to find better treatments.  I don't know why, but Anna has touched me and made me understand that nothing will change if we don't step up and make it happen.  The Basso family has lost their daughter and are still helping the world and I am so inspired by them.  We have to do something about this. 

On the ride

Kait:  When we first met Jake's oncologist, Dr. Katzenstein, he warned us that searching google can be a bad idea.  So what do I do?  I search on google.  At first I was looking to find a kid Jake's age with Ewings sarcoma, dark blonde hair, brown eyes, wears size 9 shoe...(you get the picture) and I wanted to read that he tolerated treatment, had a successful surgery, and was declared cancer free.  Obviously there is not a kid in the world that meets this exact criteria.  I was never going to find the storybook tale because there are no two situations alike.  I can find a boy with a solid tumor in his tibia but he's 17.  Or a 3 year old with a tumor in her heel.  Or an adult who beat it as a child with flying colors.  It finally dawned on me that all of us who are parents of cancer fighting heroes are doing this without a manual, and while another child's fight may be similar, no two are the same.  That realization is not a comforting one to me.  So, now my google searches consist of finding blogs like ours, of people strapped to a roller coaster with no way to get off.  I guess in a way it makes me feel better to know that we're not the only ones who think we are not handling things too well.  Sometimes I find some great advice too.  One thing I read was from an oncology nurse and she said that in her 20+ years as a nurse, in most cases the parents and family got hammered...the kids did fine.  Every day is hell for a while but to a kid it's just a short time and they go on about their business.  So maybe Jake won't be emotionally scarred from this.  It's entirely possible that I will be the one who is scarred, and I'm hoping to use my scars to raise awareness, raise money, and volunteer.  There is no way that my life will ever be the same or that I will ever be able to forget everything that we're going through. 

What a small world we live in.  I was given a gift certificate to get my hair done (a donation coordinated by Jake's teacher) and I used it this past Friday.  After I told Alicia at Utopia Hair Salon all about Jake, she told me that her cousin's young son is fighting a brain tumor.  It is unbelievable that there are so many children fighting cancer and I never knew it!  These kids live in our cities, towns, and neighborhoods.  Did you ever think you would know a kid with cancer?  Now that my own son has it I see it all the time.  My eyes have been opened to a world that I didn't want to be a part of.  A world full of unimaginable heartache, love, stress, tenderness, pain, togetherness, confusion, and support.  See the roller coaster?  With every negative there seems to be a positive right behind it.  I love reading all of the comments posted on here and on Facebook.  It makes me feel so good that we have all of this support, and I am proud to be the Mom of a boy who has touched so many hearts.  The other day Jake said "You know what, Mommy?  I am very brave."  Yes, yes you are sweet pea.

Jake had been doing very well since his last treatment until two days ago.  He started showing signs of mucositis again and has been in mild to severe pain because of it.  He has not had a fever which means as long as we can manage his pain we don't have to take him to the hospital.  Lortab and fluids are about the only things we can do to help him which makes it really hard.  Mucositis is described as having a sunburn inside your mouth and throat and, in Jake's case, can affect the entire gastrointestinal tract.  If he's just sitting watching cartoons he is fine.  If he touches a sore with his tongue, swallows, or passes gas he is in agonizing pain.  Think of your worst sunburn and imagine someone slapping you on it a few times and you can get the idea of how it feels for him.  He is still drinking a little so I'm hoping he is on the uphill slope.

We have an update about Jake's surgery.  It was supposed to be on 2/12/13 but Dr. Katzenstein was worried that his body won't have enough time to recover from his next chemo treatment.  So we have postponed the surgery to 2/26/13 instead.  This will give him a well deserved break from chemo and pokes and give his body enough time to be healthy for surgery.   That way he will have the best chance at recovering from surgery quickly so that chemo can resume.  As of right now his 6th round of chemo is scheduled for 1/31 (this Thursday) and he will be admitted for 5 days.  Thanks for praying for us and for loving our brave boy!

Taking a day off

We knew that Jake would be having a follow-up MRI while we were in the hospital but we didn't know when.  So at 6:30am on Friday morning we were awoken and told to head down to radiology because they were ready for Jake.  Talk about waking up on the wrong side of the bed!  Jake was so cranky all the way until he was sedated.  It took about an hour and then he came back to me where he said "I did a great job."  After sedation he is very tipsy so the nurse brought a Jake sized wheelchair so that I wouldn't have to carry him.  I'm not sure why, but he hates riding in a wheelchair.  He screamed the whole way back to our room and was back to being cranky for the better part of the day. 

The oncologist making rounds came by to see how Jake was doing, and to play with him for a bit.  I asked about the MRI from that morning and he brought in his computer and did an in depth comparison between the first MRI and this one.  The first MRI showed a soft tissue tumor surrounding the tibia, lots of splotchy shading up and down the bone, and hair-like cracks extending from the inside of the bone out (which were pushing the "skin" of the bone out).  The MRI from that morning showed that the soft tissue tumor was gone, the cracks were gone, the tumor was a little shorter (up and down), and the tumor itself is essentially liquefied.  This is what the doctors want to see happening and it means that the tumor is responding well to treatment.  This also means that Jake is an ideal candidate for segmental resection and allograft reconstruction without sacrifice of the growth plates or knee joint.  This means take out the ruined bone and replace it with a cadaver bone.  His leg will grow normally.  So, we got wonderful news and we are really happy.  All the terrible and hard things about this feel better now that we know it's working.  We are so thankful for all of you who have been tirelessly and faithfully thinking of and praying for us! 

Two other cool things:  we got the pictures back from his photo shoot at the hospital and they are awesome.  Here are a few:

 Secondly,  our family was chosen by Lighthouse Family Retreat to go on a beach vacation in Florida with other families going through similar situations.  We are really excited to get to go on a vacation this year when we had thought that that wasn't going to be possible. 

With treatment 5 under our belts and a very calm past few days, we are breathing a little easier.  Jake has been eating (a ton) and has been feeling good.  His teacher, Lisa, said that he was more like his old self: shouting out answers, tattling on other kids...etc.  (LOL) The norm for a 3-year-old.  At home he has been playing and laughing with Ethan, taking his medicine with minimal complaints, and just being more like Jake.  I have hope and faith that we will get through this and get our little Jakers back! 

"How's Jake?"

In most of our blog posts we have shared updates about our lives, and some insight into how we feel.  It has been a little therapeutic for us to share our world, and more importantly we can open up our world to our friends and family.  It helps to see comments and "likes" on Facebook because we know that people care.  We see that people now take time out of their day to check on our little man and our family's progress.  We've decided that on Facebook we will stick to brief updates and positivity, but on the blog we want to be free to explore our emotions.  We need this as an outlet for our grief, and it is a LOT easier to type these things than to say them out loud.  If you have advice, a prayer, a thought, anything...please share it with us. 

Randy:  In all of this we have still remained a little bit guarded, even with some of our more emotional blog posts.  When I'm at the shop and people ask, "How's Jake?", I usually say quickly "He's good", and then a few lines where I talk about his upcoming treatment or surgery.  I don't make it seem like puppy dog tails and sunshine, but I definitely don't dig down very far to find my answer.  This situation is so unique, so rare, and so terrible that I often hide reality.  If I did open up and explain how I REALLY felt, I would sound like a pretty unhappy person.  I could almost guarantee that you wouldn't want to ask "How's Jake?" again for fear of having to be trapped in that conversation.  I don't want to be "that" guy.

The reality is....this is utter hell.  I hardly know my son anymore.  He's a different boy than the one that was running in the street on October 16th when he collided with Desmond and got hurt.  He is nowhere CLOSE to the same, and only once in a while do we catch a glimpse of how he used to be.  Kait and I have to administer medicine to him every day in the form of a shot that never goes without one of us holding him down screaming his little head off.  He has to drink awful tasting medicine twice a day on the weekend.  He screams and we have to hold him down to get him to drink it and sometimes he just throws it back up.  This medicine will prevent him from catching a nasty form of pneumonia, so he has to drink it.  The rest of the days he take anti-nausea medicine every six hours and pain medicine because the shots make his bones ache.  He's 3 and can't be reasoned with.  He doesn't understand that without all of this medicine his story doesn't have a chance at a happy ending.

Quite a few friends have said "call me if you need to talk"....but what do I tell them?  What do you say when you know that there is no advice.  There is nothing anyone can say that will change these realities.  We are living out our worst nightmares, every parent's worst fear.  We have been thrown into a world that we're trapped in, and there is no exit door. I even hesitate opening up to Kait for fear that it will drag her down even more.

Kait:  I have a lot of anxiety.  I look into Jake's eyes and see fear, pain, uncertainty, and confusion.  I spend the days trying to make him happy while trying not to create a spoiled monster.  I spend lots of time, money, and gas driving to restaurants and buying food for him that he thinks he wants.  Most of the time it doesn't taste right to him and is a waste.  But, I have to try to get him to eat.  He is frail and thin.  Sometimes he stares off into space and I think the emotion on his face is depression, but he doesn't know what that word means.  I think it has to be what he is feeling when he wants to eat something he loved and discovers it isn't good anymore, or he goes outside to ride his scooter only to feel too tired after a couple minutes.  I wonder if the changes in his personality will be permanent...and if they are, how will we know if he is the person he was supposed to be before he went through hell, or the person he became because of it?  Does it matter?  Is it one and the same?

I worry about his upcoming surgery.  What and how much do we tell him?  Should he just go to sleep and wake up not being able to walk and not knowing why?  Will this fact cause emotional problems or trust issues for him in the future?  I hope that since he is only 3 that he won't remember most of this.  I worry that what he does remember is that Mommy held him down when people were hurting him and forced terrible things down his throat.  I googled "how to handle stress when your 3-year-old has cancer, you have a kindergartener, and a baby, and your husband goes to school and works." Even if I break those thoughts up to try for a better result, I still can't find what I'm looking for.  How are you people doing this?  Randy and I both no longer meet strangers eye to eye because we know why they are looking at us.  Why do we care if they look?  I used to be the person that smiled to let strangers know it's okay, to make them feel more comfortable.  I hate to say that I would rather just look down or at my kids instead.  What if I don't have the strength to hold it together?  There is no telling what would set the tears flowing.  And once they start it takes a good while to stop. 

I know there are many people who are in much worse situations than ours.  I can't imagine how hard it must be for them if it's this hard for us.  We said to each other from the start that we were going to share our story, good and bad, to help raise awareness.  When times were rough we were going to be open, even if it meant people thinking less of us.  We are doing the best we can with what we have, and hopefully that will be enough.  Even though this post has not been the most positive, please don't give up on our story.  Please don't read into this blog as us saying our friends aren't helping, because that's not at all what we're saying.  We love all of our friends and family, and you guys are helping us in more ways than we can express here.  Sometimes there just isn't anything you can say or do.....

Plans

We met with Jake's surgeon today to discuss plans for surgery. We thought it would be a quick visit but it ended up taking all afternoon. Jake had new x-rays and then we talked with Dr. Oskouei for a while. He said that from the x-ray it looks like the tumor is responding well to chemotherapy and he is confident that he can remove the entire tumor. He will do an allograft, which is replacing the affected area with a cadaver bone and he will use screws and a plate to attach it to the remaining bone. The doctor left the room to check the schedule for surgery and we spent the next several minutes freaking out a bit. For one thing, the tumor is not the size we thought it was. Not that we ever asked, but we assumed from the first x-rays that it was about 2 inches of his tibia just up from the middle. The tumor is actually most of his tibia and in the bone marrow of the tibia! So now instead of picturing that he would remove a couple inches of bone he will be removing all of the bone from one dotted line to the other. (see picture)  The dark circle is where a piece of bone was removed in the biopsy.  All of the white shaded area is the tumor. 

He will have a scar from below the knee to his ankle. Then Randy said "he won't be able to play contact sports," and I just about lost it. He is (was) such an active kid and loves sports so I was really sad thinking about having to keep him away from those activities. The doctor came back in so we could ask more questions and he said "Of course he can play sports. He can sky dive for all I care! He can completely resume normal activity after it heals (in about 9 months)." We assumed that the cadaver bone would act as a rod or a placeholder but it will actually become his bone with blood flow and will act just like it was always his. It will also not effect his growth since the growth plates will not be harmed in the surgery. As in everything having to do with this journey, we were on a bit of a roller coaster worrying about what would happen and how Jake's life would be. But, from today's consultation we are feeling a bit better and we think that the outcome will be a good one. After that, we just continue to kick this cancer's butt! Jake has to get through two more rounds of chemo and provided that there are no setbacks, surgery will be on 2/12/13. Thank you to everyone who has been praying for Jake and for us. We know it's helping and God is listening.

Here's to 2013

So, as you know we didn't celebrate Christmas the way that we had planned.  Jake was still in the hospital feeling completely miserable and quite possibly didn't even know Christmas had come.  Randy and I had planned to trade off on the evening of Christmas so the rest of us drove to Egelston to have dinner together.  Jake would hardly swallow his own saliva, let alone eat, drink, or talk.  But, he did want to open presents.  We weren't expecting him to be interested in that so we only brought a couple of his presents with us and once they were open he wanted more!  He only stayed in the hospital for two more days and was able to finish opening his presents when he got home that Thursday.  We would like to take this opportunity to thank each and every one of you who helped make this Christmas a great one for us.  You know who you are, and we thank you from the bottom of our hearts.

The next day, Aubrey started throwing up and it proved to be a stomach virus when I started on the same path that Saturday.  Unfortunately, Jake, Ethan, Randy, my Mom, and Randy's Mom all followed.  Poor Jake had hardly eaten a thing for 10 days straight and it showed.  He lost a lot of weight in that short amount of time.  He started to feel like eating again on Tuesday and has been doing a good job since.  He was admitted for his 5 day chemotherapy treatment (#4) on Thursday (1/3/13) and his weight loss triggered a nutritionist to come check on him.  Even though he had been doing better, she changed his diet plan to a high calorie diet, 5 meals a day with snacks in between.  I am basically giving him food every 30 minutes all day long...my new full-time job, at least for the next couple days.  So far this chemo treatment has been a breeze, and I'm happy to report that accessing his port was actually a tiny bit easier this time. 

Randy and I have both been struggling a bit with Jake's appearance.  We are so saddened to see him looking so weak and frail.  I watched a video of him from his birthday this past June and he looks completely different now.  He was such a little boy with a round face and chubby cheeks.  He used to be so independent, adventurous, and confident and now he relies on us for everything.  What a difference a few months can make.  I am trying really hard to find the balance between comforting and babying and I've found that it's a difficult thing to do.  In the hospital it is comforting to me to snuggle with him, play with him, watch movies, and give treats to him.  At home, I want/have to try to get things back to normal.  I can't give him all of my attention without neglecting Ethan and Aubrey and sometimes it's loud in our house with all of the kids crying at once.  They are all so young and most of the time only Mommy or Daddy will do. 

The new normal is there is no normal.  I keep telling myself that.  The boy who only wanted to eat Hershey Kisses every day no longer likes Hershey Kisses.  The boy who used to climb and then jump off of everything doesn't even want to walk down the hallway without holding our hands.   The boy who is smarter than most 3 year olds now whines or talks in "baby talk" a lot of the time.  What can I do to get my Jakers back?

I apologize for writing such a disjointed post, but my mind has been jumping all over the place tonight.  Another year come and gone and I have a feeling that this will be the longest and shortest year of our lives.  We are looking forward to meeting with Jake's surgeon next week to discuss plans for surgery.  He'll be getting new scans done soon to check on his progress and to help determine what type of surgery he'll be facing.  For now, here's to a happy, yet tumultuous, new year!  

What can I do?

In the past 8 weeks since we started on this journey, we have learned more than we ever cared to know about the world of pediatric cancer.  I will say that the most eye-opening thing we have learned is just how incredibly underfunded research is for pediatric cancers.  I guess to put some of these numbers in perspective we need to look at the fact that pediatric cancers are not as rare as you may think.  I hate these statistics, and Kait hates them MUCH more than I do.  They are horribly difficult to type out, and even harder to read.

- Each year 13,500 children will be diagnosed with cancer
- This is 46 per day, enough to fill a very large classroom
- 2,500 children will die each year from cancer, this is more than AIDS, cystic fibrosis, asthma, and diabetes COMBINED
- 1 in 300 males and 1 in 330 females will develop cancer before their 20th birthday

Those are the ugly numbers...but here is one that is a little more shocking.

- In the past 20 years...only ONE new drug has been developed to fight any pediatric cancer (clofarabine in 2004)

Seriously?....ONLY ONE...I mean Apple releases a new Ipad or Ipod every 10 days...new processors are released every 3 months....and in 20 years we have ONE new drug to fight pediatric cancers?  Why is this...technology is moving at an exponential pace, why not cancer treatments?

One word....funding....

2011 National Cancer Institute (which controls federal funding) total for all childhood cancers:

$195,529,112
(Let's compare this number to the federal funding for AIDS)
$27,200,000,000

This is for ALL types of childhood cancers.  I could go on and on about the numbers for Ewing's and other sarcomas being even smaller....but here's what we can do.  Demand the people that work for us do something about it.

Write your congressman/woman...your senator...

Tell them this is important to you.  I know that most people reading this blog now find pediatric cancer an important topic to them.  Writing your elected officials in Washington takes only a few minutes of your time.  Tell them you want more federal money to protect our children.  Cancer research is mostly privately funded, but it needs the help of the feds as well.  The money is being spent, just not on our children.

I'll get off of my soapbox now....
From our family to yours,  I hope everyone has a great New Year!

A Turning Point

Turning points usually describe moments where the progression of events changes for the better.  Like when a football team is down and gets a key interception, which gives them momentum.  This past few days leading up to Christmas has been another kind of turning point, one that we hope will not be a continuing trend.  The next 7 months of chemo suddenly started looking much more daunting after our first experience with the dark side of cancer treatment.

This all started on Friday when me, Jake, and Ethan were out Christmas shopping for mommy.  We went to Stonecrest Mall and had a good time, but around lunchtime Jake started acting very clingy, like he didn't feel good.  He refused to eat and I carried him most of the time we were there.  As the night wore on he began complaining about his throat hurting, and after consuming a yogurt drink for breakfast he totally boycotted food and drink.  Around 4pm we decided that between his unwillingness to eat or drink along with a mild fever it was time to call the Aflac Cancer team and get advice.  They prompted us to hop in the car and bring him in (over an hour away).  There is one good thing about being a cancer patient....you get bumped right to the front of the ER line.  We waited a total of about 15 minutes from walking in the door to meeting with an on call doctor.  When Jake's throat swab came back negative for Strep Throat we were admitted, and the thought was he had mucositis.

This was a new word for us...we had heard "mouth sores"...but this sounded more official.  Basically the mucous lining of Jake's digestive system was becoming inflamed, and he had no way of fighting it because his blood counts were low.  We were brought up to the Aflac Center and placed in a room, and settled in for the night.  I remembered in the ER the nurse asking if I wanted morphine for Jake....I told her no and thought "holy crap it's just a sore throat....I'm not trying to sedate him".....I had no idea.

He was given Lortab and around 4am we realized that this was not working, he was waking up screaming every 2 hours or so, so I gave the okay to give him morphine.  At first it was small doses, and he would sleep for a few hours, waking up in pain again.  Around noon the doctors made their rounds and agreed to just place him on a PCA pump, giving him a continuous stream of a heavy narcotic.  Even with this the button to give him an additional jolt of this drug was necessary on a near hourly basis.

I'm not going to try and sugarcoat this and say that everything was okay, that Jake was having fun, and that we were all smiles....not this time....not by a longshot.  Watching my son writhe in pain from time to time because he simply needed to swallow saliva, and watching as his fear grew not being able to understand why he was in such pain and that daddy couldn't make it better is the most difficult thing I have ever been a part of as a father.  He acted in ways that I had never seen, wanting me to lay with him and then holding me by the neck like I was a teddy bear.  He wouldn't let go of me to let me adjust myself to a comfortable position in bed.  When his fits of pain would hit he would kick and cry, looking at me with a sad face saying "please stop this....it's what you do, right daddy?".  It is by far the most helpless feeling there is on earth, to hear your child cry and not even be able to soothe their mind, let alone their pain.

Needless to say Jake is going to be there a couple of days longer, and Kait is with him tonight, and at least tomorrow night.  I think best case scenario at this point is he recovers by Thursday and is able to go straight into chemo, keeping him in the hospital for about 10 days in a row.  Worst case is this delays his treatments, and hurts his chances of beating this ever so slightly.  We weren't able to spend Christmas together as a family, which hurts but is so secondary to what our little man is going through at the hospital.  This will continue until his white blood counts recover, and his body can begin to heal the wounds in his mouth and throat.

I said this is a turning point because this has opened a door that we were hoping would never be touched.  This door is scary, and may be a regular scenario we have to deal with.  Mucositis is something that can be a one time deal, or happen nearly every time he gets that particular drug in his chemo rounds.  The idea of my son going through this monthly for 8 months makes me sick to my stomach, and suddenly makes functioning in a normal capacity in life a little more challenging.  Hopefully this is just a one time bump in the road, and not the beginning of a darker path.