Dear 6-year-old Jake

Dear Jake,

  Another year has gone by in a flash and here you are, already six.  Mere words could never accurately describe my love for you.  You are an amazing person.  You are brilliant, funny, thoughtful, gentle, compassionate, and kind.  You always take the time to show others how you feel about them. You are still my baby boy in a lot of ways, yet you are very mature.  You still have no idea what you've overcome, how much of a hero you are, or how you've inspired others.  I hope to share all of this with you some day when you're ready.  You excelled in kindergarten this year, in all areas, but especially in reading.  You are very creative - you love to color, play Minecraft, and build with Lego's.  Recently you have aspired to come a "doctor who treats kids in the hospital" and an architect.  I will help you in any way possible to make your dreams come true.  You rarely get in trouble, but if you do it's because of your temper.  You can get mad if you don't get your way, and boy can you bicker with your sister.
  
  You love to play golf and swim - both great sports choices for you!  Otherwise you are a very active boy who loves hide and seek and playing at the playground.  I'm so glad you are living the normal childhood you deserve and I can't wait to see who you become and what you accomplish in life. 

  I love you, my sweet pea.

               Mommy

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....

A few things

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

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

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

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

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

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

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

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

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

Jake meeting Atlanta Braves pitcher, Tim Hudson

Pressing on

Kait:  We are working hard to keep Jake hydrated and eating after his 11th treatment last week.  He went in last Thursday for his day 8 vincristine (chemo drug) push and he did okay.  He was very nervous about this appointment and therefore there was a bit more crying than usual.  Since then he has complained of some throat pain and "fuzziness" in his arms and hands, and has had many many bouts with rage.  The fuzziness is neuropathy caused by the vincristine and will hopefully go away once chemo is over.  In the meantime it is hard to hear him cry because he can't hold his spoon or play Mario Cart without his hands hurting.  He has had 5 physical therapy visits so far and is doing great with it.  He is scheduled for his 12th chemo treatment, which is 5 days inpatient on 5/31/13.  During that stay he will have x-rays of his leg as well as a chest CT scan which I'm told is routine and not something to worry about.  It's funny though because as soon as they say "don't worry" the scanxiety kicks in.  There shouldn't be anything to worry about but it's almost impossible not to worry.  Speaking of worry, we took Jake's sister Aubrey for her 15 month check up and found that she has a heart murmur.  Her pediatrician referred us to a pediatric cardiologist to have it checked out.  Better safe than sorry is our motto!  She doesn't think it is something to worry about (there's that word again!) so we're trying hard not to. 

 

Jake's brother, Ethan, had a fantastic 6th birthday last weekend and we hope to make Jake's upcoming 4th birthday on June 9th just as wonderful.  Here is Jake's 1st year video and if you didn't already know, he was a big baby.  12lbs, 6.9oz, 22.5 inches

 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

As of 5/26/13:

11 rounds of inpatient chemotherapy, 4 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 3 echocardiograms, 5 x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans.  You have been sedated 3 times and put under general anesthesia 3 times.  Your port has been accessed 24 times

The cast is off...now what?

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

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

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

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

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

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

©K&C Photography

 

Tired...and a little jaded

I have to apologize...I realize that most of the time my blog posts are bitch sessions....if that bothers you....best thing to do would be to hit "back on your browser".  

Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.

I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.

 I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.

 I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.

I want to yell....but nothing comes out....

This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??

I know that which does not kill us makes us stronger...maybe this is killing me? Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!

Under the weather

Kait: Jake wasn't feeling well on Friday so he wasn't able to come to The Color Run with us on Saturday. He has had some pain in his bottom but didn't have a fever until today. He woke up with a fever of 101.8 which is very dangerous for him. He is considered "high risk" so they put him in a room at the emergency room right away. Kind of like an ER VIP. They did a chest X-ray because he has a little cough and swabbed him for strep. Both the test and the X-ray came back normal so we aren't sure why he had the fever this morning. They have given him two antibiotics, one of which targets the intestinal tract so that if he has a tear in there he will be covered. He is being cross matched right now to receive a transfusion. His white blood count was .34 this morning, platelets were 6.7 and ANC was 320. All of those numbers are low. They aren't as low as times before when he has been admitted so they said we might get to go home on Wednesday. If his counts recover enough then he could possibly still get chemo on schedule this Thursday, but that is a wait and see how it goes type of thing. I wouldn't want to be in the hospital for a week straight, but I also don't want to delay his treatment. So, like usual, we are at the mercy of this cancer...more specifically of the treatment. There are so many fundraisers and charities working hard to raise money and donate for research, it just gives me hope that there has to be better treatments on the horizon. I know not for Jake, but for the countless others who will be diagnosed after him. Hopefully in the future the treatment for Ewing's will be just an inconvenience instead of a life changer.

There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:

The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"

Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?

I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.

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:

 

 

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?