The Diagnosis, Part 2...

Right after we found out Braden had neuroblastoma, we began calling friends and family to let them know.

Without a doubt, the hardest phone call I had to make was to Braden and Zach's babysitter, Shawna.

Shawna was a second mom to my boys, they spent more hours with her than they did with me because I was working all day long and going back to work about 2 evenings per week.

Shawna with Braden

I remember it like it was yesterday, I was sitting in the lobby at the hospital telling her about the diagnosis. We both held it together pretty well on the phone but I suspect she did the same as I did once I hung up. I completely lost it.  I could feel her heart and her pain and it was so hard. We both tried to stay positive but it was really hard. I love that lady and her family so much!

The morning after we heard Braden had neuroblastoma, we were transferred to 4Hensen which is the Oncology floor at Children's Mercy in Kansas City.

I didn't want to go and I remember telling one of my friends that I was going to have to prepare myself to see kids with bald heads and sad faces.

I was wrong.

Yes, I saw sick kids with bald heads, but they were skating down the hallways on their IV poles, and racing on pedal tractors.  One of the little sweeties who stole my heart was Chelsea. Chelsea would come to our door and peek in and if it was open, she came on in and that girl's smile made my day!! One day when the door was shut because Braden was in isolation she was outside the door grinning and smiling with her hands on the window and she licked the window.  I laughed SO hard! It was so nice to laugh!

I stayed with Braden every night for his first 30 day stay. When I was at the hospital, I never left his room and rarely his bed as he wanted me to sit with him and snuggle. One of his hands had to be touching me all the time! And I didn't mind at all!!

Occasionally, I would sneak home to take a quick shower while Brian stayed with Braden but I spent every night with him.About a year later, I finally peeked into the parent room because I was curious. :) I never left his side until one night while I was talking to four year old Zach on the phone.  Zach said, "Mom, I think dad would come down and stay with Braden if you wanted to come spend the night with me!"

Oh that stung my heart.  He was right. So at some point after a couple of rounds, I went home and slept in the same house as Zach. cAncer had split our family into two parts. Braden and me at the hospital and Brian and Zach in the outside world visiting the hospital. The hospital was home to Braden and me.

All you want is for things to be "normal" again. You want your child to not have a central line with tubes hanging from his chest, you want him to not have the pain and side effects of chemo, you want him to play outside, you want him to be able to GO outside, you want to be able to hold your other child each night and tuck him into bed. You want to make your own bed, shower in your own shower, pick up the million toys your kids have strewn all over the house, be able to come and go as you please, fuss about spilled milk, wonder what you are cooking for supper, go to the grocery store, make your bed, clean your bathrooms, vaccum your carpet, fold your laundry, and to not have to think and worry all day and all night long.

It's tough to hear people talk about how their child spilled their spaghetti all over the kitchen and it was awful.  I would have given my life to have that for one more day with my family instead of what we were doing.

Our world did a complete 180. We unexpectedly went from two incomes to one overnight. Our family of four was split in two. My career was halted and I LOVED what I did for a living!  Some of the people I loved very much turned their backs because it was hard.

And, worst of ALL, we were given a 30% chance of survival for Braden.

Miranda had died already and I couldn't fathom losing Braden too. I kept picturing visiting two graves, having another funeral for one of my babies, and living with empty arms again!

This could NOT be happening! Why would God do this!?? I had been faithful and I trusted Him!

It was after we moved onto 4H and I looked around at the other faces on the floor, that I realized...

...this is NOT from God. GOD DID NOT DO THIS!!

The God I believe in does not "give" cancer to anyone, especially children.

To me, this is the work of the other guy.  Only that guy could be this ugly and awful.  Childhood cAncer is pure evil so it must be FROM evil! My God would NOT do this!

I believe that God is our salvation during this though. He was with us every moment trying to protect Braden.

My hope was that Braden would not have to go to Heaven to be cured like Miranda had.

Braden held his arm above his head most of the time to relieve the pressure of the massive tumor and he had a hard time opening his right eye the whole way.

After scans and a biopsy, we learned that Braden's disease was not confined to his torso, it was also in his pelvis, femur, various other leg bones, skull, and bone marrow. It was stage IV and high risk.

When Dr. Shore came in and did his diagnosis speech, it took 2.5 hours because I questioned everything he said. He was very blunt and honest and I liked that part. I didn't mince words either. The first thing he said after he told us all about Braden's disease was that we shouldn't blame ourselves for the missed diagnosis.

Momma Bear lit up! I told him that I didn't blame ME, I blamed all of the DOCTORS and then I told him part 1 of this diagnosis. He was speechless.

And out of that conversation, the hospital began using Braden's story as a teaching example so it wouldn't happen again.

Dr. Shore once asked me if it helped to know that they were using this as a hospital teaching example. I told him that I was thankful but no. I didn't help. It gave me hope for others but it didn't help me with Braden's missed diagnosis.

Neuroblastoma is 80% curable when found at stage I or II...30% is what he was given because it wasn't diagnosed when it was stage I or II in October!

DAMN!!!

I'm not that good of a person and I'm not that noble.

After Braden's biopsy, he developed a staph infection from the surgery (MRSA) and salmonella which appeared after his counts went down. He had an allergic reaction to the Vancomyacin used to treat his MRSA, and he had an allergic reaction to the betadine and dressings from surgery. He writhed and ripped at his skin because he was so itchy.  We had to rub his skin 24/7 to keep him from breaking it open.

And this was all before he even started chemo!  I'll tell you about that another day, but it landed us in the PICU with the belief that he was bleeding out.

An NG tube was put in to try to give him some nutrition. I held my breath and defended that tube 24/7 because I was sure he would pull it out with the autism.

The reality began to sink in. 

And it sucked.

There was nothing I could do about it, and I'm a complete control freak!!

I just wanted to wake up from this nightmare.

I couldn't. This was now our life.

It is the life of too many!! 46 families have this day every single school day.  And 7 families say goodbye to their babies who earn their angel wings...every school day.

It's too many. It has to stop!!

With HOPE and work, it will!!

People often ask what things are helpful to do and tell families after their child has been diagnosed. We had an amazing support sytem of friends who knew exactly what we needed when I didn't. Here are a few that were extremely helpful things they did for us:

PRAY and share the story so others can pray!

Email, write messages on blogs, send cards, just let us know you care! That is your connection to the outside world and you have NO IDEA how much it lifts your spirits and inspires you to keep fighting!!

Do NOT disappear, even if it's hard for you, if you want to remain in the family's lives! I lost many friends and family relationships because people just disappeared. Things don't "reset" after treatment. You change and if friends and family are not there to support and adapt, you don't have the same relationship.

Love us, even on our bad days.  And don't judge! We may not make the same choices you would, it's our child, support us and be positive. Remember the golden rule! :)

And I'll just throw this one in, please don't send us crazy fads that are going to "cure cancer" like eating asparagus.  That is insulting to us and not helpful.

Start a Meal Calendar! Meals were SUCH a help for Zach and Braden at home

House Cleaning: a group of friends paid for a housekeeper to come 2x a month...what a blessing!! This was INCREDIBLY helpful!

Take siblings who are at home on special playdates. That made a HUGE difference to Zach and it allowed me to have peace of mind knowing that he was being cared for in such a special way by so many loving,kind hearts!!

Make sure it's okay to visit before you do so, hospital time is crazy and there are times you just don't want to have visitors. You still want to hear from and talk to people, but there's a lot going on and you have to take care of your child. Germs are VERY bad and I wouldn't let visitors in for that reason. Your immune system is very compromised and one person with the sniffles could land you in the PICU.

And most of all...

...have faith and believe!!

Miracles happen!! :)

With HOPE!!!

The Diagnosis, Part 1...

From the time Braden was 6 months old, until Halloween night of 2007, there were a lot of hospital stays and visits.

His developmental problems had made themselves apparent and I really felt like there might be some sort of connection with all of his health problems and his developmental problems.

We had taken him to the Genetics Department of CMH to look for a couple of rare genetic syndromes.  They were progressively regressive...meaning eventually terminal. They would result in him becoming progressively worse, eventually in a vegetative state, and then dying.

We were relieved to learn that he did not have those particular syndromes, but I still felt there was something there though.

Then came Halloween night.

Zach was Buzz Lightyear and Braden was Woody.

Braden was crying and could not be consoled. This was rare, but familiar. It always happened when he had pneumonia and we were entering another respiratory event.

So after trying to get him to go trick or treating with us, we gave up and took him to the ER.

They did a chest x-ray, as usual, but this time the doctor's eyes said something different.  She said there was a small gray shadow in his liver.

She told us that she thought it was probably an enlarged liver due to a virus but she wanted us to stay overnight so they could do a CBC.

We did, Raggedy Andy was our doc.  Seriously!! :)

The next morning a new doc came in (dressed as himself) and he noted that Braden's hemoglobin was 7.5 and that was almost at transfusion level. He felt like it was a dietary lack of iron that was causing it and that it was really just an enlarged liver due to a virus.

He couldn't have been more wrong.

He told us to follow up with our pediatrician, Dr. Shanker and he sent us home with iron drops to raise his hgb.

If you've read anything I've ever written, you know I did follow up.  REPEATEDLY!

Braden started iron drops.  He had told us it would take a few weeks.  We went to our pediatrician two days after we were in the hospital and then back in two weeks for labs and another physical exam.

At that time, the pediatrician told me that his liver was normal size again and he didn't feel anything abnormal. His hgb was up to around 8 something so they wanted us to continue on the iron drops.

Braden wasn't eating much and was losing weight. He was very sleepy and very cranky (which was NOT Braden).

I continued to take him back in and each time they rolled their eyes and sighed because "she's back AGAIN!"

I once took Braden in for a weight check because he had lost SO much weight. His clothes were simply hanging off of him. The nurse was clearly frustrated with me and how many times we had been in and she said, "I don't know WHY you are here for a weight check, he has gained a pound since the last time you were here!"

I ripped Braden's shirt off and showed her his skeleton appearance with a big belly and said, "LOOK  AT HIM!! THIS CANNOT BE RIGHT!!"

She literally sighed and said, "I don't know what to tell you...he's gained a pound!"

It was tumor weight.

BUT, I continued to take him back in.  December 23,  I took him in because he was really having trouble breathing. Dr. Shanker agreed that he wasn't moving much air on the right side. He prescribed steroids which is standard for asthma flares.

We did those and it didn't do any good. We got through Christmas and on December 28, 2007 right after Brian's parents got on a plane to head home, we went outside to play in the snow for a bit.

Braden was behaving just like he had on Halloween (only two months prior). SO..,we took him back to the ER out of pure frustration with our pediatrician.

All four of us went, which was rare but I just had a feeling that we all needed to be there.  Angel whisper.

That night would change our lives forever. 

They did another chest x-ray and this time the doc came in white as a sheet and showed us the picture. It was completely gray...that small shadow had exploded. It had completely compressed his right lung..that's why he wasn't moving air on that side. His liver and kidney had been squished down at the bottom of his torso and the tumor was approaching his heart.

She said she didn't know what it was but it could be cancer or it could be something progressively regressive in his liver.

I was voting for cancer. At least he would have a chance if it was cancer, he would not if it was something progressively regressive.

We drove Braden downtown to the hospital (no more ambulances where I couldn't be with him) and we were admitted onto the floor while they ran more blood and a urine test.

Yes...a urine test.

They put two cotton balls in his diaper and once they were wet, they ran an HVA/VMA test on them to see if those two proteins were in his urine at elevated levels. If so, that would indicate neuroblastoma.

Stop for a minute and let that sink in. All it took was TWO COTTON BALLS OF URINE!!

You have GOT to be freaking kidding me?!!! 

WTH AGAIN!!!

The nurse who had been with us for two days, stayed late. I knew that wasn't a good sign. She would later tell me that she wanted to be there when he told us.

His HVA was over 250...the upper limit of normal is like 15. 

The doctor told us that they would do scans and a biopsy to confirm staging but that it was neuroblastoma.

The nurse was crying and she gave me a huge hug. Then she told me that she was sorry but she was glad that we were Braden's parents.  I didn't fully get that until much later, but when I learned how awful this cancer was and remembered the baby in the PICU who had a dark room with no family, I knew.

I asked the doctor for information about neuroblastoma and he said he didn't know anything about it but he suggested I look it up on the computer

SHUT THE FRONT DOOR!!  SERIOUSLY??!! GOOGLE IT??!!! 

WTH??!!!!

I reminded him that I hadn't planned on being in the hospital and had no computer with me!

He said he could try to print some things for me.  THAT was my initiation into neuroblastoma.

I learned a lot in part one of the diagnosis meeting.  First, doctors do not know everything.

MOMS KNOW THEIR BABIES!!! AND Doctors should LISTEN to us!

And I trusted NO ONE in the medical world. Every doctor from that moment forward had to earn even the tiniest respect and trust from me.  I interrogate and debate every single thing any doctor tells me to the finite degree.  They better be able to back it up with solid research that I can't poke any holes in for me to agree.

I didn't now WHAT was wrong with Braden, but I knew something was wrong and I tried repeatedly to get help for my son, but the pediatrician would not listen to me and brushed me off every single time I took him in.

I spent a LONG time trying to figure out how I was going to handle that. After Braden's diagnosis (just about a week after I saw Dr. Shanker for the last time in his office), he called up to talk to us at the hospital and he apologized for missing the diagnosis.

It was very fortunate for him that Brian took that call.  Brian was calm, I tend to not be calm about things like that! :)

He wasn't the only doctor who missed it though...the doc we had after the overnight stay on Halloween missed it, pretty much every doc at the pediatrician's office had seen Braden and they all missed it.

What I had to tell myself is that no one tried to miss it.  They just did! It's wrong and it put my son's life at risk but they mean to miss it.

It just proves the point that we MUST do a better job of educating the medical world on diagnosing childhood cancer. Missing these diagnoses is simply unacceptable.

They didn't know.  Not okay so we are trying to change that through our foundation and through the actions I took after this with the hospital and the pediatrician (no, not a law suit).

But, we have to do better!!  We CAN do better!!!

I have HOPE!!

I'll tell you part 2 of this story tomorrow, who we called, what it was like moving to the oncology floor, the biopsy, and the speech in which we learned about neuroblastoma for the first time.

Damn cAncer!!

Braden's first medical scare...

The cAncer mess was not Braden's initiation into the "scary medical world",

It was my first initiation into the world of "The Advocate Mom".

This was actually a very important set-up for the cancer mess and how we would negotiate it.

I think God times things perfectly and purposefully, but this was an extremely frightening ordeal and the docs weren't sure Braden's was going to make it.

When Braden was 4 months old, he had a cold.  It kept getting worse. I had taken him to the doctor because I was concerned.

I really didn't get anywhere with Dr. Shanker, if I was a smarter person, I would have seen the foreshadowing and changed docs right then and there.

His cold got really bad and he was having a hard time breathing so I loaded both of the boys up (4 months and 21 months old) and took them to the ER.  Brian was buying his truck and got there as quickly as he could.

They admitted Braden into CMH South.

His sats continued to get lower and lower and he was really struggling. They had done numerous breathing treatments and even had him in an oxygen tent. I continued to go out to the nurses' station and tell them things were not okay and he needed help. They said that they wanted him to struggle a little so his body could learn to fight. Finally, the charge nurse came in (I knew her personally) and took my concerns seriously!

His sats got into the 60's and I began to lose my patience.  Finally, they decided to transfer him downtown so they could intubate him.  About 4 months after this ordeal, we met the Head Doc of the hospital and I threw these numbers at him and the learning problems Braden was having. He believed that Braden's apraxia (speech) was caused by that lack of oxygen. Awesome!

I went with him in the ambulance but they do not allow you to ride in the back with the child. I sat in the front seat and fretted. I had never been to CMH before and I wasn't even really sure where it was located.

We had to wait in the waiting room of the PICU for a LONG time and finally they came out and told us that  they had a difficult time getting a central line. I learned the term "fluffy" which is what they called Braden. :) It was a polite term for fat. :)  He was a portly little guy...his thighs were huge and he had BIG BIG chubby cheeks. He was sooo cute!!

We finally got to see him and once we got in, one of us was in the room 24/7 with him. When we first walked in the room, I was taken back by how similar things were to Miranda's set up. Heart monitors, warmers, a ton of other monitors, and that ocsillating ventilator that made Braden vibrate. That is a sound and feeling that is something you never forget.

The PICU is like Vegas (but a WHOLE lot less fun!!)...you cannot tell when it is night or day and there are alarms going off all the time keeping you awake. At that time, they only had a wooden rocker in the room and I used to sleep on that rocker with my head on Braden's bed. I did not go home at all, I sat by our son and prayed. There is NO privacy at all!! None..you live in a glass cage with thin walls.

They used to kick me out to take a break, and I would just sneak back in. :) You can't have food in the room, but I would sneak it in my pockets ( I refilled from our locker when I left for 2 minutes to go to the bathroom) and that's how I ate.  Shhh... :) I sat with Braden 24/7, sang songs to him (some we made up), and caressed his head and kissed him the entire time.

But, Braden wasn't getting better, he was getting worse and their interventions were not working. The docs were very worried and they had a very honest discussion with us.

We had heard enough "honest discussions" about reality and odds with Miranda to understand exactly what they were saying.

Many of our next door neighbors were getting better and moving out of the PICU, the little guy on one side of us had fallen into the ice in a lake and had been under water for 30 minutes before the fire fighters rescued him. The day we arrived, they told his parents he was brain dead. He woke up and was starting to talk.  No kidding! An article in the Topeka paper months later was sent to me by a friend showing that he was doing well!! Amazing!!

Then there were the rooms that went dark. One of those rooms had a baby in it that no one visited. The hospital volunteers came in and rocked the baby and held her but no one that appeared to be family ever visited her. Then her room went dark. That one haunts me to this day. I asked if I could go rock her but the nurses said I couldn't because you have to be one of their volunteers. I understood but no baby should die alone. I was so grateful that Miranda died in my arms. She knew we loved her for her whole life. This sweet baby didn't have that and that was more sad than I can ever explain.

The doctors had tried various things to help Braden, and he wasn't responding. One of the docs told me that he had "wimpy white male syndrome".

I have a definition of what that means, :) but I was curious what THEIR definition was. :) They said that white male babies fight the least hard of all the babies they get in the PICU.  I asked which babies fought the hardest and they told me that honor belonged to African American females. I can believe that!

SO...in an effort to fight "wimpy white male syndrome", I crawled into Braden's crib with him. I put his head on my shoulder just like Miranda's head was on my shoulder while she was alive and as she died and I told him that he was NOT going to get the same speech his sister had gotten. It was NOT okay for him to go to Heaven and rest. I needed him to fight. I needed him to stay with me.

About that time, the nurse (I like to call her Brunhilda) walked into the room and began to scream at me.  "what was I doing in that crib...had I touched anything...blah blah blah blah blah".

I knew my way around those lines after Miranda, but she had me freaked out too with all of that ruckus.  I got out of the crib and moved to the side of the room...she called in backup.  And they all scurried around the room checking everything.  The RT kept checking the monitors and it really was freaking me out!

I finally just asked what was wrong...had I done something to hurt him?

The RT had a confused look on her face and said that his sats actually looked stable, and even a little better! 

Hmmmm.... REALLY!?!!

SNAP!!!

Brunhilda left the room, defeated.  And I smiled!! :)

He continued to get better, we put him on a c-pap for 24 hours and then we were moved into a regular room 24 hours after that, 48 hours after that, we were home.

Whew...

And then two months later, it happened again!

This time, Braden was airlifted from South to downtown.

When we got down there, he hadn't been intubated yet and the doc said that he was going to let Braden struggle a little so his body could learn to fight.

I said no.

I then told them that I wanted them to do a c-pap again so that he could get help up front and not get so weak that his life was at risk again. We were NOT going to repeat last time and we needed to give him support NOW so it that didn't happen.

And I was that matter of fact, except I was louder than it looks on this page!! LOL!!

The doc literally threw his stethoscope into the wall and stormed out of the room.  The RT looked at me and gave me the "uh oh" look.  She followed the doc out. She then came back in and started messing with things and I asked her what the plan was.

She said they were going to start c-pap.

Great idea!

And 48 hours later, we were on the floor, and 24 hours later, we were home.

We then began exploring why this happened and Braden was diagnosed with asthma. We started preventative meds when he gets a cold.  He's been in the hospital overnight several times but never again landed in the PICU for that reason...yup...there were other reason but not that one.

These two experiences taught me several things.

First, Braden is a fighter, he just needed to understand that he needed to fight! 

And I learned how to advocate and fight.  Doctors don't know everything and when you question them, tell them that. If you think they are wrong, fight them.

It's not like I'm going to invite them to go out to dinner so we can hang...they are there to do a job and I'm there to do fight for our son. We don't have to agree, but I am going to question (more like interrogate) :) and make them justify and defend every decision and action.

And when I think they are wrong, I throw my veto card..and say NO!  We have that right as parents. It's one syllable...NO!

Those lessons served me well in the next phase of the medical world initiation...Braden's diagnosis.

Tomorrow, I'll tell you part one of that diagnosis. It's an extensive one in which many mistakes were made and the diagnosis was missed for two months with me continuing to follow up and use my big girl voice to argue.

I learned even bigger, better lessons through that missed diagnosis and those lessons would be the perfect storm to create "Momma D" oh sure, the hospital and docs have other "more colorful" names for me but Momma D is MUCH nicer!!  LOL!!  ;)

The Club...

Nope...not the fun club where you get a few brews and dance...

The exact opposite.

The cAncer club, specifically, the mother of a child with cAncer club.

NOT a club you want to welcome in new members, but it happens every day.

46 every school day.

This past week, many children that I have a personal connection to through others in this world have been diagnosed.

My heart is so heavy for them. I don't want them in the club, I want this to be an exclusive club with no new members. In fact, I want to END the club.  We are fighting to stop membership through our foundation, but we are not there.

I've thought about those mommies so much this week. The initiation process into this club is a horrible one.

You notice something isn't right (maybe you have been noticing something wasn't right...that was the case for us..I'll post about Braden's diagnosis this week) and you take your child to the doctor...

and you see the look of "oh crap!" on the doctor's face when he/she realizes what you are likely dealing with.

You know...in your heart your know that whatever it is the doctor ISN'T saying is something you do not WANT him/her to say.

You close your eyes and pretend that maybe that wasn't what you just read from the doctor..you convince yourself you are being too sensitive and you don't really "know" anything yet...

but you know.

A parent's heart always knows.

The real answer doesn't come right away. It takes testing and horrible, painful pokes and prods and scans...

And all the while you are telling yourself that they are going to come back and tell you it's a virus or something relativey simple like that.

cAncer happens to other children but certainly it wouldn't happen to YOUR child...they have to be wrong and there's a far simpler explanation.

Then the word slams into your heart while the doctor gives you the diagnosis.

You spend the first few days telling yourself that you know it's real BUT it can't be real and that there must be a mistake of some sort...and you wait and watch for them to come back in and tell you there was some sort of mixup in the lab or patient files got changed or anything that doesn't mean your child has cAncer.

You look at your child's eyes and you see the same child you played with at the park hours earlier, the same child who wants to still play, the same child who repeatedly asks when you can go home because they are tired of being at the hospital.

You wonder how the hell you are going to do this. How the hell can YOUR child have cAncer?

This is your BABY...

...and you can't fix it.

When your child falls and gets a scrape or cut, you can fix it. When they a "regular" illness, you take care of them and you fix it.

You cannot help your child with this one. You have to rely on others, who are telling you that this may be something even THEY can't fix, to try.

You build a wall and you bring your inner-most circle into that wall and you shut out the rest of the world.

It's not to be mean...it's because you can only deal with so much and as much as people want to be helpful and wonderful, you just can't deal with the outside world when your heart is broken into a million pieces and you are more frightened than you have ever been in your entire life.

You can't change a single damn thing. You are powerless against it.

At that point, acceptance begins and each parent reacts differently.  NO reaction is a bad reaction and no reaction is wrong, they are all just different!

Some parents need to yield to the doctor's wisdom and recommendations and simply hold onto their child and hope.

Others fight and question anything and everything.

And most are somewhere in the middle.

Your friends handle things differently as well. Again, none of the reactions wrong, just different.

Some of your closest family and friends go missing.  I think it's because they just can't deal with it, it's too hard for them.  I don't believe it's because they don't care, although, I will confess that it feels that way very much.

Then there are friends, some that you don't even know and have never met, that reach out with grand gestures to let you know they are hoping and praying and they help you in ways you didn't even know you needed the help.

Most are somewhere in the middle.

Every single thing in your life changes overnight. NOTHING is the same and you have a feeling that it will never return to being that "normal" again.

You are right.

It won't.

You and your family and your friendships and your world are completely changed.

It's not a change you chose to make, and it's not a change you can control.

You fear the word, "future" because yours is so very unknown to the level of "will my child live".

You don't feel jealousy of those who have your old "normal" but you yearn to have that normal back.

You reflect on what once was your life and how you thought little things were huge deals.

You learn.

You love.

You redefine.

You fight.

You cry.

You ache.

You curse.

You fume.

You stew.

You believe.

You TRUST.

You have FAITH.

AND...

You HOPE!

Praying for all of the newest members in the club.

And praying that we end membership, soon.

Some of you may be wondering, so what should you do and say and what should you not do and say when you know a child who is diagnosed with cancer.  I can't speak for everyone, but tomorrow I will share with you a few thoughts about some AMAZINGLY helpful things people did to reach out to support us that truly helped!

Accountability and Integrity...

I'm not sure when things changed in the world, maybe they didn't, but it sure seems like there is far less personal accountability in the world these days.

I appreciate when a basketball player fouls someone and raises his/her hand in the air to say, "it was me" instead of the drama queen John McEnroe "YOU CANNOT BE SERIOUS" move. :)

All of us make mistakes...I make them every single day.

No one is perfect.

I'm FAR from it! :)

But when I mess up (and that happens a lot), I admit it...

and I apologize for it and try to make it right.

My friends do the same, and the vast majority of people I meet in this big old world do as well...

But there are exceptions.

The people who always look for someone else to blame for their reactions and circumstances. 

It's never their fault!  It was always because someone else did "x" so I had no choice but to do "y".

And there are the people who simply walk away and pretend something didn't happen.

I did that once when I was in preschool (or so the story goes, I don't remember it but my mom loved to tell it)! :)

I broke the arm off one of my mom's little figurines on her dresser and I set it back up so it looked okay from a distance and walked away.  Then when she found it when she was dusting, she asked me what had happened.

I lied.  I told her I had no idea. My mom didn't buy it and I ended up crying my eyes out and confessing.

I got in way more trouble for the deception and lie than I did for the figurine. 

And...

that's how it should be! 

We mess up...we are imperfect people and we sometimes make mistakes.

Last night, I witnessed a little guy do something wrong.  And it was a pretty big something. He told his dad what he had done (kudos to him) and the dad...

the dad simply moved away from the scene with the little boy and continued about his business pretending like nothing had happened.

So I became the tattle-tale and told the person in charge what had happened.

What kind of example does that set for the child? He was trying to do the right thing and he told what he had done.

He now knows that instead he should do what I did with the figurine and walk away and pretend it didn't happen next time. ??????

I'm still perplexed!

Isn't that doing the exact opposite of what we should be doing as parents?

I'm NOT the perfect parent...I mess up a lot there too,

but it sure seems like that is not the message you want to send your child.

I'm pretty sure no one was going to hand the child over to the police for his mistake...he was a little guy who did something wrong because he was unsupervised and curious.  Oops. Understandable!

But a parent not accepting responsibility and then teaching his child to hide from the truth...

I just don't get it.

I hope that when my son's do something like that, I will explain to them that it's not okay and why and then I march them down to the person in charge to explain what they did and apologize. (and there will be consequences for those actions)

And I'm pretty sure I would be apologizing as the parent as well....profusely!!

Another story from when I was little...my best friend's parents owned a grocery store and each time we were in there together, we got to take one piece of bubble gum each.

One day, I was with my mom and not my with my friend, and I took a piece of bubble gum.

(hmmm...seems like I did a lot of bad stuff when I was little)! :)

and my mom made me take it back in and hand it to my friend's mom and tell her what I had done.

It was humiliating and horrible...and I never did anything like that again!! And my mom hugged me when we walked out of the store and told me she loved me.

I want to be a parent like mine were.  I messed up, they still loved me, and we faced it together.

Thanks Mom and Dad...I didn't always thank you when I was growing up, but I get it now.

Everytime you said, "someday when you are a parent, you will understand" and I rolled my eyes and sighed while complaining that you were "being COMPLETELY unfair"...

well...you were right....and I was wrong!!

I get it!! :) 

I feel blessed to have had the parents I had even though they were by far the "strictest parents in the entire world"!! LOL!

I guess that means I only have like 40 more years before my boys "get it" too!! ;)

Sighhhhhh... :)

Food Rules...

I am a picky eater.

And I'm very OCD about food!!

I love food but I have some crazy arss rules about it. :)

Every person who has ever worked with me is cracking up right now and shaking his/her head in affirmation. :)

The secretaries who worked with me always laughed at me almost every day.

Let me give you a run down of the rules.

No...they don't make sense...

to anyone but me! :)

I think they are beautiful, reasonable, and just smart!! LOL!!

#1. No mushy food. 

Mushy food is gross.  I can actually get physically ill just thinking about mushy food. I'm not kidding! EW! :)

That means no milk on cereal..for 20 years, I took my cereal to work with me every morning in a baggie and I ate it dry. Oh how people used to giggle about that! :)

It also means no ice cream cones...put mine in a dish please...the cone gets mushy and soggy.

#2. Absolutely, positively NO TOUCHING of foods on the plate.

This rule is non-negotiable!!

If food is touching, I can sometimes eat the parts of the individual pieces that did not touch the others...but the communal material is done! :)

One time, one of my secretaries brought me a divided tray as a surprise gift! :) I LOVED that tray!!  I cannot stand when the juices from one thing runs into something else.

I don't even like gravy on potatoes, or gravy over biscuits and gravy and I have to eat them very fast if I do eat them because of rule #1. Things get mushy as a result! :)  I prefer to keep things separated and dip.  Nothing worse than a mushy biscuit covered in gravy. :) 

The first thing I do when I'm at a restaurant is separate my food with adequate spacing! :) At home, I often use multiple plates!  If a breadstick lands in the sauce, it's done.  Violation of two rules...touching and now...mushy.

Brian used to love to get the Bubba's Benny at First Watch Restaurant for breakfast. It's basically some kind of bread (biscuit/pancake?) topped with hashbrowns, eggs, and gravy.  It made me physically ill to look at it.  SOO many rules broken there!! :)

Hey..I can now use the same fork, knife and spoon for different foods..that's progress, right?!! ;)

#3 NO BONES.

That one is simple...I do not eat meat that has a bone on, near or around it.  I just don't want to see the skeletal remains.  I have gotten better with age and can now have something served that way, but I immediately cut the bone off and it must be taken away from the table. 

I cannot stand to watch anyone clean the meat off a bone while they eat.  One of Brian's favorite things to do is to suck the very last piece of flesh off a bone while I sit there trying to block out the visuals and sounds just to gross me out.

It's not funny Brian!! :)

When I was a Principal, I had lunch duty for 2 hours a day.  The ONLY thing that drove me from the lunchroom was kindergarten kids and chicken legs.  I simply could not take it. 

When I was pregnant, the custodian used to tell me to just stay upstairs and not come down on chicken leg day!! The cafeteria manager always called up and made the secretary warn me when it was chicken leg day, and then he laughed his head off!!  I had to suck it up and I usually made it down for all grade levels, except the sweet little kindergarten kids who sucked those bones until nothing was left!! It was like the movie "Gremlins"!  LOL!! I almost got sick every time!

Cringing right now as I type that!!

EWWWWWWW!!

#4 NO Leftovers!

Yes....I went to bed hungry a lot as a child as a result of this one.

Leftovers violate so many rules but the biggest one is that they turn mushy when they are reheated.

There are a few exceptions and I can do a couple of things, but 99.9% of the time...no way! :)

#5 No lunchmeat.

Cold meat??

No explanation needed. Shuddering!

#6  If food that was once warm is now cold, forget it

Kinda goes with rule #5...but applies to food that has been heated and then cooled off because I didn't get to it fast enough to eat it while it was hot and not mushy.

SOME foods can be reheated and be okay, but very few. If I don't get to it right away and it can't be reheated, I don't eat.

#7 Party Food Rule

This one is important...any food that is something that has been cooked and has been out for 2 hours at one of my parties is trash. People FLIP out when they see me dumping it after that amount of time, but....

Ew.

Why challenge the Gods of Salmonella!!

And I don't keep any other food (even dry stuff that would be "good") after the night. It's been out and among many hands...can't do it....like President Bush said, "wouldn't be prudent"! ;)

#8 Community Food

Can't eat community food very often.

Buffets and cafeteria lines...no WAY!! The thought of somebody coming through and sneezing below the sneeze guard or touching the lettuce to get the right piece or one million other things...  Oh boy...that'll put me right over the edge!!  YIKES!!!

Crazily enough, I can do brunches but I head straight over to the "made to order" part of the "buffet"! :)

This rule is one of the reasons that staying at the Ronald McDonald House is tough for me to do in Philly...that and I don't ever have enough time to do the laundry and clean and remake the beds before we leave for our flight without getting up at 3:00 am (seriously) which sort of defeats the purpose of sleeping at the RMH! :) And...the fact we can never get it because it's crazy booked!!  It's nearly impossible in Philly.

I just don't want to share a box of cereal with ten other families who may have been digging through it to get the toy! LOL!!  I'm a germaphobe...someday I'll blog about that...it's a whole nuther story!! :)

#9...NO Rare meat.

blood on my plate is a meal-ender as well!!

That one really needs no more explanation!!

And...

That pretty much covers it!!

FYI...Brian KNEW this stuff before we got engaged!! 

I'm pretty crazy about my food rules and I pass on a lot of food...usually I pass and go straight for ice cream or donuts! They are pretty safe. :)

And THAT is why I have gained 15 pounds!! LOL!!

Hope these rules made you giggle.  I know they are nuts but I bet some of you are saying, "YESSS!! I agree with some of those"!

I'm not alone in the food rules world...maybe I'm the only one with this many...

but I'm not alone!! :) LOL!!

Have a GREAT day!!

Chiefs, Part II...

This was actually our introduction into the world of the Kansas City Chiefs.

Remember, I am a HUGE Chiefs fan!! LOVE my Chiefs and have since I was a little girl! :)

I was in Philadelphia with Braden while he was getting scans, and I got a phone call from a friend saying she had nominated Braden and me to do the coin toss for the Breast Cancer Awareness game on October 24, 2010 against Jacksonville.

I was elated!! I had just had my reconstruction surgery two weeks prior (and when I got home, my sutures would open up and I would spend the night in the hospital and have surgery again the next morning...because Seriously...this is my life!) :)  And my head was now covered in very short hair post chemo! No more hat!! :)

I was hopeful we might get the call, and we did.  :)

I completely FREAKED out.  They explained that Braden and I would do the coin toss and that we would get to be on the field while the guys warmed up and kicked off!!

I mean I really FREAKED out!! I had only been to Arrowhead twice...let alone touch the turf and been up close to the players. 

WOOT WOOT...we were going to get to do all of that!!!

Well...I posted about it on Braden's CaringBridge site and someone sent that message to Mr. Donovan, Mr. Pioli, and Mr. Hunt.  I had no idea...

Right before the game, I got a call from them telling me the details of where we were supposed to meet, what time, etc, and they mentioned that Mr. Pioli wanted to try to meet us in person if possible.  WHAT??

MORE FREAKING OUT!!

Well..the day of the game, not only did to meet Mr. Pioli, we met Mr. Donovan and Mr. Hunt too.

Shut.The.Front.Door!!

(Mr. Donovan was the one that told me someone had emailed my CaringBridge post to them and that's how they knew we were such huge fans...and that Braden and I had been fighting cancer together.)

We got to meet those three amazing men in person and talk to them for a bit....and that was before the guys even came on the field! WHOA!

Braden was amazed by a dried up, brown leaf he found on the side of the field.  He wouldn't let go of it.  He just held it and stared in amazement!  LOL!!  Perspective, all of this going on around him and he appreciated a dried up brown leaf!!!  This child is amazing and so is his brother (who was freaking out like mom). :)  They were only 5 and 6 years old but man will they have a story to tell their kids (HOPEfully) :)

Then the players came out and Braden and I got to stand on the side of the field.  KC Wolf held one of Braden's hands and I held the other and we were waiting for the signal to go to the center of the field.

I was soaking it up..and trying to stay composed but finding it really hard to not jump out of my skin when I noticed a REALLY big Chief standing next to me.

Right next to me.

I turned and looked and I didn't know his face (but he was HUGE). I couldn't see his numbers but he was chewing his mouthpiece and laughing while staring at me. I must have looked like a deer in headlights! :)

I said something like, "I know...but I'm sort of pinching myself trying to believe this is real!"  He burst out laughing!! I blushed. :)

I found out later, it was Brian Waters.

Freaked again! 

So we got the signal and went out on the field with KC Wolf. 

Now this is game and they are in game-mode, fierce faces, tough guys going into battle to whoop up on some jaguars. I expected to go on the field, watch the coin toss, and then just walk off.

I didn't expect what was going to happen next.

We hadn't met Matt Cassel yet but we had been talking to Lauren trying to find a date to meet him. 

Well, right after the coin toss, in the middle of the field, Matt bent down on one knee and smiled and looked at Braden.

Braden ran sprinting into his arms, threw both arms around Matt's neck and gave him a HUGE hug!

I think Matt's hug back was even bigger!

And I was in tears.

To be honest, I'm not exactly what the sequence was next because I couldn't see for the tears and I was completely amazed BUT...

we were suddenly surrounded by Chiefs giving Braden high fives and pats and smiles and love!

and I got a lot of hugs and kisses on the cheek too. I do know that one of those kisses was from Brandon Flowers!! Woo hoo!! Never washing my face again!!

HOLY MOLY!!

If this was a dream, I did NOT want to wake up!!

So the guys started to clear out and we began our walk back to the sideline when Coach Haley (who we had never met either) RAN OUT ONTO THE FIELD straight to Braden, and he bent down on one knee and gave Braden a HUGE hug and I got a hug and a kiss on the cheek.

Bryan Truta (the announcer) would tell me later that all of the guys in the control booth watched that and every single one of them had tears too.  It was incredible!!

I was shocked and happy and amazed and speechless...(for me, speechless is a BIG deal! ;)

We got to watch the kickoff from the sideline...SHUT UP!!! :)

Then we made our way through the tunnel (another moment...holy smokes!) and they took us through this beautiful hallway to a suite.  And the story doesn't end there!

Waiting in the suite was the most beautiful flower arrangement...for me.  WHOA! 

And at halftime....Lauren Cassel came to visit us and we got to meet her in person!! 

If that wasn't enough, she stayed for most of the second half talking to the boys and the other people in the suite with us while trying to keep an eye on the game.  She is one of the most gracious kind people I have ever met!!

And again..holy moly!! She could have just said hi and moved on...but she stayed and visited.

At the end of the game, I didn't want to go home.  I knew this was a once-in-a-lifetime opportunity and we stayed for as long as we could to enjoy every minute.

The KC Chiefs are a class act!! They went above and beyond to make the day special for Braden and our family just because they cared! Another one of my favorite top ten days EVER!

So this post and yesterday's post are two of the reasons I love the Chiefs...but there is still SOO much more to the ongoing Chiefs story!! We'll save that for another day!!

And I will say it again, "2013 IS OUR YEAR KC CHIEFS!!"

Here are the pics! :) 

And remember, if you want to see them bigger, you can click on the picture and it will enlarge, I recommend that...they are pretty small on here! :)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2013 BABY!!!