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.

Thankful for good days

Out of the past fourteen days, Jake has been in the hospital eleven of them.  The last three of these days he was in isolation, meaning he couldn't leave the room for any reason.  My wonderful husband ended up staying with Jake during the isolation days and it's easy to say that we hope those days are few and far between.  There is no way to guess or anticipate when or how often Jake will be sick in the hospital in addition to his chemotherapy and that is a major wake-up call for me.  I am the type of person that likes to plan and schedule things and when the plans get changed without my approval I feel anxious and stressed.  I'm starting to realize that this personality trait is not conducive to cancer fighting.  Randy is always saying "control what we can control," and the truth of this statement is applicable to every part of our lives.  Not just getting to scheduled appointments, treatments, and obligations for Jake as well as Ethan and Aubrey, but really in everything we do.  From getting up in the morning after sleeping through the alarm to remembering to feed the dogs and change the kitty litter.  I'm starting to wonder, "Can I control anything??"  I didn't think I was a control freak, but losing control of things is making me want to hang onto whatever control I can get my hands on.  It's mentally draining sometimes.
I despise being pessimistic and sometimes that can translate to being unrealistic, but with Randy countering my optimism with a dose of reality I think we are doing a decent job of making it through.  Whew...sorry, that was a confusing sentence.  Anyway, my plans from now going forward is to have a hospital bag packed for me so that I don't get to the hospital and realize I didn't bring a brush, toothbrush, pajamas, or a change of pants. Extra pants are essential for when I get spilled/peed on.  My Aunt Cathy suggested early on to pack a fun bag for Jake and that has been a huge help. 
Finally getting to the title of this post- today has been a good day!  And, I'm thankful for that!  Jake played all day, ate without much prodding, and laughed.  What a beautiful sound to hear my baby being happy.  I'll bend and change and do whatever it takes to continue to hear that sound. 

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

The first bump in the road

So, Jake has had two chemo treatments and both went pretty well with minimal side effects, at least none that were unmanageable. We had been told that his blood counts would dip 7 to 10 days after chemo and they really did this time. He woke up this morning with a fever of 101.1 which is essentially a round trip ticket to the hospital, no questions asked. I packed a quick bag to head to Egelston and we were our way. I know I've said this before, but Jake really doesn't want to go to the hospital anymore, and every time he protests I think "we've only got about 8 more months of this," and that is not a comforting thing to tell a three year old. I mean, that's got to be an eternity to a little kid! We got to the clinic waiting room and he just starts screaming that he doesn't want to go to the doctor and then they call his name and he really lets loose. With the spotlight on us we swiftly escape through the doors to get to our room. The nurse has to access his port and begin antibiotics. After she's done, she comments that I would be a good wrestler with the moves I was using to hold Jake still. I just hope as this goes along he doesn't fight as much because he is already pretty strong and will most likely surpass my strength before long at all. LOL.

His bloodwork confirms that he has no defenses against infection and that we would be here for a few days until his white blood count comes up. He would also be receiving a transfusion before the end of the day to help the process along and make him feel better quicker. This is the first time I have witnessed a transfusion and in my dramatic mind, I imagined that it would be an ordeal. I have no idea what I thought it would be like, but I certainly didn't think it would be no different than when he is just receiving fluids. So, there he sleeps peacefully receiving another person's blood with no trouble at all. I used to donate blood every three months but stopped at some point in between pregnancies. Now I must remember to get back on the schedule to return the favor for someone else who donated blood for Jake. **hint hint...go donate blood!**.

I meant to write about this yesterday but got sidetracked- Jake's teacher asked us to come back up to school yesterday because the football team for the high school wanted to meet him. You know how the teams take a knee and make a semi-circle around the coach? Well, imagine that except with them all surrounding Jake instead. The coach told Jake that they are his team and that they are his family and that they pray for him all the time. Then the players all yelled "we love you, Jake" and went back to their practice. It is so comforting to know how many good people there are in this world. How could our little boy touch so many hearts? I truly hope that Jake is the closest that any of those players will ever come to knowing cancer.

A lot of people ask how Ethan and Aubrey have been doing with all of this, and for the most part we think they are doing well. We went and had lunch with Ethan at school yesterday and Randy talked to his teacher while we were there. She said he is behaving pretty much the same, which is a very good thing! She had the idea to have all of the kids make get well cards for Jake and before they made them she asked Ethan if he wanted to explain what's going on. She said he used big words and explained very clearly and she was impressed by how well he understands what is going on (for a 5 year old). This news was a big relief for us. We are trying really hard not to make Ethan feel left out or less important...hopefully we're doing a good job. Aubrey is such a good baby and is happy 99% of the time. We don't think she is being affected at all. *fingers crossed*

I've stayed up long enough to make sure Jake isn't having a reaction to the transfusion. Now I'm tired. Goodnight!

-Kait

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.

Treatment 2

Yesterday we were set to arrive at the outpatient clinic at 10:15am where we wait for the outpatient room to be ready.  This time we arranged for Ethan to come and meet with Layne, the child life specialist, so that she could explain Jake's illness to him.  She explained that Jake has a tumor and that it's called Ewing's sarcoma and that it is cancer.  He asked questions like "Why did he get it?" and "Do we need to get rid of it?" which were really good questions.  He had it stuck in his head that the accident that Jake had in the street is what caused the tumor so Layne explained repeatedly that cancer is not caused that way, and also that he can't "catch" it from Jake.  She gave him a "Beads of Courage" sibling necklace and gave us a kit of beads so that we can give them to him as we see fit.  Layne said that his responses to her explanations were almost text book and that he seemed to grasp the concept with no problem.

I think Jake is starting to realize that he goes to the hospital a lot and he isn't as excited about it as he was in the beginning.  I had to take him for blood work on Wednesday to make sure that his white blood cell count was high enough to receive chemo yesterday and the entire way to the hospital he whined and cried, "Mommy, please don't make me go to the doctor. I don't want to go.  I'm scared."  Again on the way to Egelston yesterday he made the same complaints.  It sucks because he is at an age where there is no good way to explain why.  We tell him that we have to in order to make his boo-boo go away but that doesn't make a dent in his cries.  He repeats it over and over until all we say is, "I know, but we have to."  I just pray that he doesn't remember all of this, or if he does it's just from the pictures that I've taken where he is smiling and happy. 

We got to his room on the outpatient wing at 2:00pm and settled in for our stay.  We got some lunch and waited for the chemo to start.  The nurse began his etoposide and he started coughing, his faced turned splotchy red, and he vomited.  The nurse disconnected the etoposide immediately and called the doctors in.  They said it was an allergic reaction so the decided to halt chemo until morning. They will try another form of the drug (etopophos) that will hopefully not have an adverse reaction.  Jake recovered from the reaction very quickly and has been in a good mood ever since.  

Thanksgiving week

We had a wonderful Thanksgiving week spent with lots of family.  There were definite highs and lows, but overall it was a happy time.  As we sat at the dinner table it was difficult not to think about the possibility that our beautiful little boy might not beat this.  That one year, his seat could be empty.  It’s miserable to think about and I wish that none of us would ever have that thought cross their mind.  The reality of it is that even though it hurts, maybe we should have that thought about our loved ones.  It may not be cancer threatening their lives, but each and every one us will die of something, some day.  So here’s the cliché:  don’t take a single day for granted.   Or, tomorrow is not promised, live for today.  You catch my drift?

Dad, John, Vickie, and I went out for some “Black Friday” shopping and then napped (a lot) that day.  Randy’s Dad and brother came up for the weekend and had the pleasure of helping Randy with his exterior illumination display.  (Raaaaaaandy…the little lights aren’t twinkling!)  Between my Dad, Randy’s Dad, Matthew, and Randy, it only took all day to finish (including breaks).  I know Randy appreciated the help and the kids love it!  That night the boys watched their favorite movie: "The Polar Express" while wearing their fashionable Polar Express shirts. 

Today, Jake had an appointment at the inpatient clinic to check his blood counts and receive a short chemo infusion.  The child life specialist came in to explain how it would be for his port to be accessed and to play with him during the appointment.  He did a bit of kicking and screaming before the nurse accessed his port but most of it was just because he was afraid that it would hurt, but it didn’t hurt because I had put the numbing cream on it an hour before. He blissfully played on the ipad until his chemo was finished.  All that was left was to wait for someone from orthopedics to come and remove his cast.  He was very nervous about having it cut off and kept saying "but, I think it's cool" in hopes that I would abandon the idea all together.  It only took a minute to remove it and we were out the door.  He is having some trouble walking but it didn't stop him from riding his scooter this afternoon.   He is such an awesome kid.

The "How" and "Why"

It has been 5 weeks since we heard words that would change our lives forever, and normal became something completely different.  It was not until November 5th that we officially were told our little man had cancer, but the moment we were told there was concern our mindset and outlook on life changed completely.  I have a good friend that has gone through something similar with one of his children that has given some great advice, and his predictions about how I would feel and act have pretty much been dead on.  Nothing can prepare you for this, no book you can read with instructions, and the emotions that become part of your daily life are everything from sorrow to joy, anger to depression, happiness to sadness, and so many more.

It is only natural that when something this devastating enters your life a particular word begins to enter your mind....

"Why"....

Why is our little boy going to suffer?

Why do our lives have to be turned upside down?

Why do we have to face every parents worst nightmare?

and the worst "Why" of all...

Why would a loving God do this to us?

From the start of this Kait and I kept telling ourselves we would control what we could control, and the quote I told myself over and over again is from "The Last Lecture" by the late Dr. Randy Pausch:

"We cannot control the cards we are dealt, we can only play the hand"

There was a time on November 6th, the day after Jake's biopsy, driving back from school that "Why" entered my mind, and it got the best of me.  I became angry...at life....at God....at everything.  For the first time in as long as I can remember I prayed....like...really prayed.  Not blessing a meal....not going along at church....but really talked to God.  I sat in a pew at a church in Monroe and it all came out....but not once did I ask God why.  Deep down inside I knew there was no answer....there would be no response.

"Why" is toxic...it is something we can't control...and only leads to despair and anger.  I decided that word was going to be deleted from my vocabulary.  Anger is not productive and is going to do nothing to help us get through this.  Instead I'm going to focus on the word "How"....as in:

How can I be there for Jake and my family through this?

How can we use our situation to raise awareness about Pediatric Cancers?

How can I make a difference going forward?

Hopefully others can follow our journey and realize that tomorrow isn't promised, and that these things happen to real people.  Maybe we can all realize that getting worked up over little things just isn't worth it.  I have been as guilty as anyone about letting little things get the best of me, now most of those things seem so trivial, and it makes me laugh to think how much of my life I've wasted getting mad over things that just didn't matter.  Life is precious, and it is short, enjoy the ride.

Now the only why I am willing to ask is:

Why didn't I realize this before now?

So far so good...

We are officially done with the first treatment of chemotherapy!  It was a long two days so it's hard to imagine what the 5 day stays will be like.  Jake only had to have one infusion on Saturday before we could go home but he couldn't get it until around 2:00pm so we waited around for 2:00pm to come.  While we were waiting Jake had two special visitors.  They were clowns from the Big Apple Circus!  One of them blew bubbles while the other played the ukulele and sang a song about Jake.  They were pretty funny and had Jake laughing and having a good time. 

We made it home by 5:30 after stopping by the pharmacy to get all of his new medications.  He has a pain medication since he is very soar from the port placement and also from the bone marrow aspirations.  He has to take an antibiotic every Saturday and Sunday (twice a day), and he has two different anti-nausea medications.  Starting on Tuesday we will be giving him a shot every day in between hospital stays.  The shots will tell his bones to increase production so that he will recover faster from the chemo.  Jake is doing so well with all of this, but he sure does suck that he has to do it.  :-(

Day One

This has been such a looooooooong day, but we feel a sense of peace now that the chemotherapy has started and we are on the path to recovery.  We have an idea of how each infusion will go and we'll gradually become comfortable with it as it is our new normal.

We left the house at 5:30am to get to Egleston for a 7am check-in time.  His surgery to place the port and have a bone marrow sample was scheduled for 9:40am.  We were a little delayed because it is quite a process from getting to pre-op and having him wheeled to the OR.  A nurse comes in to check his vitals, then the anesthesia nurse comes in to discuss giving him medicine to relax him.  Follows is the surgeon's physician assistant, the actual surgeon, the child life expert, the anesthesiologist, the oncologist, and the oncologist's physician assistant.  There is no possible chance of not understanding what they are about to do!  The surgery itself took about an hour and then he was in recovery for an hour before he was moved to his room in the Aflac Cancer Center.

He was/is in a bit of pain but was completely  happy watching Toy Story and then playing with puzzles on an ipad.  We agreed for Jake to be in a study where his treatment protocol would be randomly determined.  He would either get the normal chemo treatment consisting of 5 drugs, or he would receive the same 5 plus another drug called topetecan.  Jake was randomly chosen to receive the normal 5 drug treatment which means that our first stay in the hospital is only two days. 

At 6pm he began chemotherapy. The nurse came in wearing a hazmat type gown, mask, and gloves to administer the drugs into his IV.  I had no idea what to expect as far as chemo goes, but it is apparently some really potent stuff that they're using!  He received 3 drugs today via an IV drip into the new port,  The first drug took 5 minutes, the second took 15 minutes, and the last took an hour.  Both before and after the infusions he has have a saline drip to keep him very hydrated because one of the drugs will irritate the bladder if it sits in it for long.  Because of this, Jake is basically a peeing machine.  (Too much information?  LOL)  Speaking of pee, we now have to take special care of his during chemo and 48 hours after.  They have been studying the effects of chemo drugs and have found that as the drugs are flushed from the system they vaporize from his pee and can be inhaled if you are nearby.  So, we have to wear gloves and a mask to take him to the bathroom and then cover the seat with a plastic pad to be sure the toilet doesn't release the chemicals as it flushes.  You learn something new everyday.  You're welcome.  :-)

I would say that our "Day One" was not too bad, and I pray that as we endure this first roller coaster of treatment and that it continues to be alright.  We won't know for sure how his body will respond or how long it will take him to recover his blood counts until close to the next treatment.  We have been told to expect him to begin losing hair in about a week but that the symptoms of nausea and vomiting should be under control from some medications that we've already been given.

We know that today's success is largely attributed to all of the prayers that are being sent up for Jake and for us.  We can't thank you all enough for taking the time to think of us and pray for us while we endured our "Day One." We did it and are in good spirits.  On that note, I'm going to sleep.

The Day before Day One

As far as chemotherapy goes, the first day is called Day One.  Tomorrow is our "Day One," but, today we had to go in for the last tests.  Jake had blood drawn to record beginning cell counts, an echocardiogram, and an EKG.  I am so proud of this little boy, he is so mature and brave.  He does whatever the doctors ask him to do and rarely complains.  Unless, of course, you want to pull a band-aid off. 

If you have never been to Children's Healthcare of Atlanta you are lucky!  But, if you have been, you know that the staff, treatment, and service is unparallelled.  They are wonderful people.  We have been there half a dozen times now and we haven't met a single person there that wasn't a joy to be around.  I can't say enough about this hospital and we are so so fortunate to live close enough to be able to take Jake there, even though it's a 40 mile commute each way.  As my Dad pointed out, at least it's not a plane ride away!

As we were leaving the hospital today there was a musician playing for a big group of kids, all of whom are sick.  Attached to IVs, hairless, in wheel chairs, you name it.  I realized that my baby is going to be one of those kids in a matter of hours and I had to walk away so that Jake couldn't see my tears.  With our Day One on the horizon I am being forced to accept this reality, and folks it ain't easy.  Then again, no one said this was going to be easy.  My brother, Dan, sent an email with perfect timing.  In it he said "You are a strong woman and I know you and Randy will be strong for Jake."  Thanks for the reminder, Dan, and you're right!  Jake needs us and we will get through this.  There is no other choice.

Wow...

Randy has some amazing friends!  They made this for us and have it up at one of the local bowling centers.  Thank you so much guys!

Meeting with Dr. Katz

Jake has a favorite stuffed animal named "Mr. Kitty" who he received from his Nana on his 1st birthday.  Jake has a habit of running Mr. Kitty's tags in between his fingers and it is so cute!  Jake's oncologist is Dr. Katzenstein (Katz for short) and we think it's no coincidence that Jake's stuffed buddy and the doctor who's going to get rid of this disease have similar names.  Hey, we'll take any indication of hope that we can get!  

We received a call from Dr. Katz on Monday.  He told us that the cancer is localized, meaning it has not spread!!!

Thank God for answered prayers!  We have been overwhelmed and rendered speechless by the amount of prayers and support given to us by, not only family and friends, but also complete strangers.  It has been a very humbling experience thus far. 
We met with Dr. Katz today , as well as the social worker, child life specialist, nurse practitioner, and nursing team.  All of these people will be working with us to make Jake’s treatment go as smoothly as possible.  It is a complete understatement to say that these people at Children’s Healthcare of Atlanta – Egleston are amazing.  They are on the ball and we couldn’t be happier to place our baby in their hands.  As a matter of fact, every doctor that Jake has seen has been nothing but fantastic.  He has a wonderful, caring, and attentive pediatrician, Dr. Angela Hutchins-Howard.  All of our kids have been treated by her since birth and we couldn’t fathom changing physicians.  We firmly believe that things happen for a reason and the chain of events and people involved leading up to today were put in place for the purpose of catching the cancer early.  We did, however, get a big wake-up call when the oncologist said that the survival rate for this type of cancer is 65% to 70%.  I guess I’ve been in some kind of denial about the severity and seriousness of Ewing’s, so today was a little depressing for me.  I’m sure it won’t be the last depressing day and I will have to work hard to be strong for Jake.  We have to beat this, there is just no other choice.

CT Scan

We received a call on Thursday the 8th to tell us that Jake's CT and PET scan were moved up to the next day, Friday the 9th.  We went in at 7am and Jake got an IV, drank the contrast, received the radioactive isotope, and then waited for his turn.  He actually fell asleep in Randy's arms while waiting.  This was Randy's first time seeing Jake sedated and he hard a hard time handling it.  It's one thing to see your child in pain and quite another to see your husband succumb to his emotions.  So far we have been taking turns being strong and freaking out.  Hopefully we can continue to hold each other up this way as we start the long road ahead. 

Now What?

We went home the afternoon of the biopsy and treated Jake with lots of snuggles, cartoons, and chocolate milk.  The pain medicine makes him nauseous so we let him eat whatever he was willing to eat.  That night was the hardest yet, but as a couple days passed he was much better.  He feels pretty good during the day but still complains of leg pain at night (which is one of the symptoms of Ewing's).   Jake went back to preschool today and he had a great time.  His teacher, Mrs. Lisa Sizemore was amazingly supportive and caring and she took special care to make sure he was comfortable.  Jake is a "Kiddie Cane" at Monroe Area High School.  It's a program for high school students who want to work with children.  Mrs. Sizemore and Mrs. Smith do an incredible job with the high schoolers, who in turn give great attention to the preschoolers.  We couldn't be happier that we choose for him to attend their program!

Biopsy Results

11-5:  I am so awesome that I set the alarm for p.m. and overslept.  We were 30 minutes late to check in but they didn't say a word to us about it.  Things went smoothly as we were seen by the anesthesiologist, a fellow on the surgeon's team, and several nurses.  We were told that because they were removing a small piece of his shin bone it would weaken the bone, so they would be putting a cast on his leg for a few weeks to make sure he didn't break it.  This procedure required him to be under general anesthesia.  They gave him an anti-anxiety medicine (which made his loopy) and then wheeled him back to the operating room.  It's hard to remember, but after a while the surgeon came in to tell us the bad news.  They had sent the sample to pathology and it already came back as cancer.  I have little memory of the rest of the conversation, and held it together barely long enough for him to leave the room.  Our nightmare was confirmed, our baby has cancer. 

Leading up to Diagnosis Day

On October 11th, Jake was playing outside with another boy in the neighborhood.  That boy rode his bike directly into Jake, knocking him over in the street.  He scraped up his face and elbow, luckily not knocking out a tooth in the process.

Saturday, October 13th, he hit his shin on a chair and screamed in agonizing pain.  Much more than you would normally cry over a little bump.  After talking to Dan about, we agreed that it could possibly be a hairline fracture from the bike accident and that it should be x-rayed.

Monday, October 15th, I took him to the pediatrician on Monday morning and she also thought it looked like a hairline fracture.  She ordered an x-ray to be done STAT.  Meanwhile, Ethan's school called saying that he didn't feel well and I needed to come get him.  I swung by the school to get Ethan and then went on to the hospital.  The results were given to the pediatrician within an hour.  She was concerned that he may have an infection and wanted us to bring him to the emergency room at Egleston Children's Hospital right away.   I packed the kids up and headed to Atlanta.  It was the busiest night that the ER had seen in a long time (unfortunately) and we waited 4 hours to see a Doctor, had blood work, and then saw an orthopedic doctor.  I took the Ethan and Aubrey home while Randy stayed with Jake until very early in the morning when they were released.  Basically, the doctors had no idea what the mass on his leg was.  They referred us to a specialist with a very scary title: orthopedic oncologist with a specialty in rare tumors.

Tuesday, October 16th, we received a call from Jake's pediatrician saying that the radiologist read the x-ray that morning and believes that Jake has Ewing Sarcoma.

Wednesday, October 17th, he had his appointment with Dr. Oskouei  (the specialist) who said that he doesn't know what the mass is and therefore needs Jake to have an MRI to find out what kind of tissue it is.  The MRI was scheduled for October 31st.

Wednesday, October 31st, we went for the MRI at Egleston and Jake was such a trooper.  The nurses all said he is a very mature 3 year old.  The only time he cried was when they wanted to remove a band-aid.  He was too busy playing with an Ipad to notice them putting in an IV.  He was sedated and the test took about an hour. 

Friday, November 2nd, I received a call from Dr Oskouei's assistant saying that the results were back from the MRI and that they think it is Ewing's Sarcoma.  She asked us to come in right away to see the doctor and discuss what to do next.  I went straight to the office and Jake was seen very quickly.  Dr. Oskouei said that he still doesn't know what the tumor is and that we need to do a biopsy next.  He strongly believes that this is osteomyelitis (bone infection) rather than the cancer because of Jake's age and because the tumor is very painful.  The biopsy is scheduled for 7:30am arrival time at Egleston on Monday, November 5th.  We will receive a preliminary diagnosis the same day, but will have to wait 3-5 days for a firm diagnosis.    So far this has been a roller coaster.  It's cancer, it's not cancer...it's cancer, it's not cancer...Ahhhhhhhhh!!!  We have decided to try not worry and just wait until we have a confirmed diagnosis.  This back and forth is really stressful and exhausting!  In the meantime we are praying.