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

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

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!!!!

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 ♥

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. 

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.

Eat More Chicken!

For the past 9 months, I had been looking for a part-time job without success and I now see that it is a good thing that I didn't find work so that I can be home or in the hospital with Jake.  Randy is in college full-time pursuing a teaching degree while running a small business in the evenings.  Needless to say, we had a tight budget to match our tight schedule even before the "C" word came into our lives.  When Randy decided to go back to school we thought long and hard about the decision, and it wasn't one we made lightly.  Ultimately, getting his degree was the right choice for us and I, for one, have never looked back.  It was a risk to make that decision and we thought that everything would be fine as long as nothing major came along.  No one ever thinks the worst will happen to them.  If you had told me 4 years ago when I found out I was having another baby boy that at age 3 he would be going through the hardest thing he would or should ever have to face, I would never have believed it.  Who thinks, "cancer can happen to my family, let alone my child?"  Sometimes it still feels like a dream.  I remember walking through the hospital after Jake's MRI and seeing a young couple pulling a bald toddler in a wagon ahead of us.  It brought tears to my eyes and I wondered if they ever thought, "How did we get here?  When did this become our lives?"  I find myself now wondering the same things about our family.  Now we are the ones walking the halls, avoiding eye contact so as to not see the looks of pity on the faces of passerby's.  I only do that when it's been a tough day at the hospital.  Most of the time I smile and then smile at Jake and then the strangers smile too.  Maybe they think that if I can still smile then things will be alright.  Hair or not, IV pole or not, he is a handsome little boy and he's ours.  He behaves like a 3-year-old and in many ways he is lucky.  He gets to be naive to his condition.  He has not the capacity to understand other people's projections of emotion.  He doesn't know when he's being stared at or how serious his disease is.  Thank God for those things.

A little while back, we went to Well Fargo where Randy used to work and opened up an account in Jake's name.  We had been receiving requests for information on where people could send donations, and realizing that we were going to need the help we went ahead and opened an account.  Randy's friend, Pam, told us that day that she had already talked with Chick-Fil-A, Monroe, about doing a fundraiser night for our family.  We were astonished that she was working on this for us.  It is really hard to accept that we are "those" people.  It's our faces on the donation jar and we do need the help.  She then teamed up with Jake's teacher, Lisa, and the two of them worked tirelessly to get the word out about this event.  In addition to that, Elaine Dillon, Susan Phillips, Christina Barnett, and Joy Chambers worked so hard at making and putting out fliers to share Jake's story as well.  (One of which I saw in the Wal-mart parking lot yesterday.  I apologize to the random woman who witnessed me finding the flier and subsequently losing it.)  The combination of all of these people (plus many more, no doubt) made our fundraiser night a huge success.  We arrived a little after 6pm, which is par for the course for the Russell family to be fashionably late.  Unbelievably, there was a huge fire truck in the parking lot, with its ladder extended high in the air.  On it was a poster that read, "Come Help Jake."  My best friend, Brittany, and her family arrived close to the same time and said to her husband, "Kait is going to freak when she sees the fire truck." She was right, but I held it together with the exception of some shaky hands.The firemen let Ethan and Jake climb into the seat and ring the bell, and they were both grinning ear to ear.   

The restaurant was packed with people, there was not a table left open, and the drive thru line was wrapped around the building.  Christina went to order her family's food and said "We're eating for Jake," and the cashier said, "Everyone here is!"  We saw a lot of faces that we knew, some we recognized, and even more that we didn't know.  And, let me repeat, they were all there for Jake!  We are so proud that our son has touched so many hearts, and we are also proud to live in a community that is so compassionate and giving.  I am learning a lot of things as we go through this, one of which is that I will be more generous in the future, and I will teach the kids to be the same way, whether with money, with time, or with both.  I have to be honest, I was very nervous about going to Chick-Fil-A and it being awkward to talk to people about Jake, but it was quite the opposite.  We enjoyed meeting and talking with everyone.  We were definitely overwhelmed by the enormity of our support, but it was really comforting at the same time. 

There is no doubt about it, Jake has been dealt a crummy hand.  In fact, everyone who loves Jake and is in pain because of it, has been dealt this crummy hand.  Randy and I are not alone in our pain, but most importantly, we are not alone in our joy.   We will never be able to thank all of you enough for supporting us.

 

Thank you Chick-Fil-A!

Third times the charm

On December 14th, Jake was admitted for his third chemotherapy treatment.  As I've said before, he doesn't like to go to the hospital anymore but I was ready for this and came with ammunition in the form of The Polar Express soundtrack.  Nothing can distract a 3-year-old like hearing "it's a magic carpet on a rail...never takes a rest...winding through the mountains and the snoooooooooooow" over and over for and hour and 15 minutes.  The song is 3 minutes and 23 seconds long.  You do the math.

Jake has taken a liking to the Child Life Specialist, Layne, and asked for her as soon as we arrived.  She is really good at her job and is working with him to help "normalize" his visits to the hospital.  She let him play with all of the real equipment (minus a needle) that is used to access his port.  He had a lot of fun pretending, but when the time came for his port to be accessed there were no more smiles.  Hopefully, that part will get better soon.  It's interesting, because I think that it has become normal for him to be attached to a pole.  He is conscious of the tubes and mindful of the pole being beside him at all times.  His anxiety is only surrounding the port. 

  We didn't have to wait too long to be transferred to his room, which was conveniently located across from the play room.  As we approached, we could see that there were a lot of people in the play room and not just any old people, but, Santa and his elves!  A charity called "For a Day Foundation" held a Christmas party and all of the children and families were invited for pictures with Santa, presents, crafts, and treats.  Jake sat on Santa's lap for about 5 minutes talking with him and Mrs. Claus, about nothing and everything.  He oooohed and ahhhhhed over the presents that they gave him and made everyone smile.  

The rest of his stay went very uneventfully and we were on our way home by 2:00pm on Saturday.  I doubt that all of his treatments will be this way, but it seems like after the 3rd one we are getting into a bit of a routine.  I am starting to anticipate his actions and moods and can better comfort and distract him.  He was feeling very good so we went ahead and took the kids to see Santa at Bass Pro Shop that night.  The manager, Jeff, made sure that we were able to see Santa since Jake wouldn't be able to come back next weekend since his blood counts will plummet starting on Thursday.  *hint hint- shop at Bass Pro Shop*

Even though it was raining cats and dogs on Sunday, we went to get our Christmas tree.  An incredibly generous and patient man named Brian waited for us to get to the tree lot, loaded the tree onto the roof of the van in the pouring rain, and then refused to take our money.  He said that he knew about our family and it was on him.  I continue to be amazed.  Now we have a beautiful tree in our living room, two happy little boys, and one very curious little girl.  On a side note, we made it through two children before having a kid who explores everything, including the light sockets.  Out came the outlet protectors!   I can't wait to see what kind of trouble she will get into with the tree and all of those twinkling lights.  After all the kiddos were asleep in their beds we got word that an article had been written about Jake in our local newspaper, The Walton Tribune.   Randy went straight out and bought several copies.  Needless to say, we were shocked that it was on the front page and the article itself was about a half page long. 

 

We live in an incredibly wonderful community, and we are really lucky to be a part of it.

Seeing the best in all of us

I am not going to try and sugarcoat the fact that looking at the glass "half full" is really difficult in a situation like this.  There are times, like this morning after being told Jake had the flu, that it is darn near impossible.  However when the cup seems be at its minimum, something or someone comes along and points your attention to the good.  In the past 5 weeks since we heard the words that would change our lives forever "It appears there was no infection", we have seen the absolute best in our nature.  From family, to friends, to people we only see on rare occasions and exchange pleasantries with, the outpouring of support has been beyond overwhelming.  We have a list of thank you notes that we need to write, which is quite lengthy, and seems to grow with each passing day.

From financial help, to help watching our children, to something as simple as offering to be an ear to yell at when we want to let it out, it has all been appreciated.  In our true time of need, the very best is what we're being shown.

We also see it from complete strangers.  Today I was going to the laundry room here and noticed some boxes stacked up with a note that said "Please take one".  They were called "JoyJars", and they were inspired by a young lady named Jessie Rees.  I brought it back to the room and showed it to Jake, and he was delighted to see it was full of little toys, a tambourine, and a little hat with the intials "NEGU" embroidered on it, which stand for "Never Ever Give Up".  I did a quick facebook search and found the Jessie Rees Foundation:

 http://www.facebook.com/JessieReesFoundation?ref=ts&fref=ts

When I read the story I was inspired....you see Jessie lost her battle with brain cancer at AGE 12, and still wanted to help others.  I repeat...SHE WAS 12...DYING OF CANCER...and was thinking about helping others.  Her vision has turned into a wonderful example of what we can all do if we give a little time.

A little later one of the nurses came in and told me that if I went to the family room there was a group with some food and a gift for all of the children.  I worked my way over and by "some food" they meant about 25 feet of sub sandwiches....and by "a gift" they meant a mountain of toys with instructions to take whatever you wanted.  They were putting the hard sell on too..."here take this"...."I'm sure your son would love this"....I left with a small race care, a coloring book, and a little battery powered flip car.  About 20 minutes later they were walking by and I asked them who they were with and to thank them again.  They were a small local group called "Aiden's Army", and they said he had been a visitor here and they were just paying it forward for all of the gifts he had received.

Again....quick facebook search:

http://www.facebook.com/aidensbuffalosoldiers?ref=ts&fref=ts

I read over the story and Aiden lost his battle to brain cancer as well....at 18 MONTHS OLD.  Again...these people suffered the ULTIMATE loss a parent can be dealt at that young of an age....and they come up here and give away their time and money to help others?  The story goes on as in about 15 minutes they came to the room and had a box of toys for Jake.  They gave him a couple of monster trucks, Thomas trains, cars from the Cars movie, and many more.  They also gave each family a $25 Walmart gift card....the words "Thank you" are so inadequate in situations like this.

To those reading this with facebook, please take the time to go to these pages and support their causes.

These are just a few examples of the countless acts of kindness that we have experienced.  We are so incredibly grateful for everyone's help during this time.  It is just so incredible to see the absolute best of who we are as a people.  How much we are willing to put other people's needs before our own.  I told my buddy Dave Savino while we were bowling Thursday night that we "had no idea how big our family really was until this"....and that is true.  We love our family and friends more than we ever have, and we are so blessed to be surrounded by so many good people.

I said above that "Thank you" is inadequate, and someday we will pay all of this kindness forward, but for now we can just genuinely say:

Thank you

Home again

Jake has now completed his second round of chemo which included a 6 day and 5 night stay in the hospital.  Not quite a vacation, but it wasn't really as bad as we thought it might be.  Jake was occupied by several volunteers just itching for a kid to play with.  They chased him around and around the nurses station while he road the tricycle, painted with him, and played trains.  Then Randy let him ride the tricycle all over the hospital, which I didn't realize we were allowed to do.  There wasn't complete freedom, but it did give us the opportunity to explore and get relief from some cabin fever.  I was really ready to go home but Jake was not because he remembered what has to be done first.  He is always very unhappy when anyone goes near his port and in order to go home the nurse has to remove the access (the needle and tubing) from the port.  It's not a pretty site and really not fun for me either.  I have to hold him down so they can peel the tape off, and to add insult to injury, he had to get his flu shot.  The poor boy was definitely ready to get out of there after that!

Now we are back home and Jake is having fun playing with Ethan and Aubrey and everything is sort-of back to normal.  Jake's hair is sparse- all that's left is very blonde and fuzzy.  We tried to give him a buzz cut this weekend but he refused.  The first thing Ethan said was "Where did all of Jake's brown hair go?" Jake looks in the mirror and laughs, "Look at my hair!"  Then he runs off to play.  Our fears about how he would handle looking different were calmed by his response.  He just doesn't seem to care!

I don't think I can say enough that I am so thankful for all of the family, friends, acquaintances, and complete strangers who have shown us so much support.  I am also very thankful to have married a thoughtful, kind, generous, compassionate, loving, hard-working, handsome (including the mustache) husband.  He is my number one support when I feel sad and always says the right thing to make me feel better.  Sunday night was one of those times and this is what he said: "For whatever reason we have been chosen for this road and we have to decide how we will handle it.  There will always be demons trying to get in, but we can make the choice to keep them out."  Randy, I love you. 

The Little Things

Since Jake and Ethan were babies I have enjoyed laying with them while they go to sleep on occasion, as I think most parents do.  It would make me smile just thinking they felt safer going to sleep with daddy by their side.  I would sing songs to them, or help them if they were having a hard going to sleep by rubbing their backs, or running my fingers across their forehead and back through their hair.  It has always been a simple pleasure that I knew would be coming to an end as they become older.

Tonight I laid with Jake here in the hospital while he went to sleep and sang "itsy bitsy spider" and his personal favorite "on top of spaghetti".  After a couple of minutes he was fading away, with his eyes closed, hanging on to consciousness with a slight smile on his face.  I took my hand and ran my fingers through his hair, after a minute or so it hit me that this was the last time I may ever be able to do that.  He started losing his hair at a pretty rapid pace today, and the back of his head is pretty sparse already.  We have talked about going ahead and shaving the rest of his head tomorrow because it is causing him some irritation on the back of his neck.  So even if his hair takes a few more days to completely fall out, he won't have any by tomorrow night, or any other night for the next year until his hair grows back.  At that time he'll be almost 5 years old, and getting too old for daddy to lay with him, singing songs and rubbing his belly.  It really got to me, it was the first time my emotions really came out in Jake's presence.  Fortunately he was asleep, on his way to dream about Spiderman, Lightning McQueen, or just being home with his brother and sister.

I am sharing this because everyone should stop and enjoy their simple pleasures, the "Little Things" that make each day special.  We've said before that tomorrow isn't promised, and the little things we do day to day won't necessarily always be around.  Never be too busy to be your children's teddy bear, playground, or opponent in a game.  Some day they will be older and you will be replaced by friends, or worse yet something happen and time be stolen.

Cherish each day, and it's little moments that make it whole.