Alexander Kind of Day...

Okay...here's another oldie but goodie. I promise it's the last one for awhile from our CaringBridge site (www.caringbridge.org/visit/bradenh).

This one was written in February of 2010, just about a month after Braden was diagnosed and I was having one of those days. 

It was so "Seriously" that I had to share it with you. It was one of those days and everything was going wrong,

but it was also worth a few giggles....

after I had time to chill.  LOL!!

I was exhausted and pooped from no sleep, and my heart was hurting for Braden and Zach both. It really had started to sink in that Braden was fighting for his life and Zach's life was completely turned around now too.

It was quite a day... :)

Hope it gives you a couple of giggles too!!

HUGS! :)

Hello!
I am having an Alexander kind of day! For those of you who don't know the children's book, Alexander has a terrible, horrible, awful, no good, very bad day (or similar descriptors/order!). Braden's intestinal infection is back. We were schedule to come home yesterday but he spiked a fever at the last minute and we requested to stay at the hospital instead of going home. This infection was so serious last time, we were too scared to come home until we knew more about how he would do.

Braden eating chips...any food he was eat was allowed! :)

Last night was a bad night for me--the gravity and seriousness of Braden's illness really hit me hard (again) and I found myself in a state of complete self pity! Not to worry, Lisa helped last night and Doctor Shore heard about my dismay and brought his "team" up to talk me down off the ledge and do a little "Humpty Dumpty" repair work this morning. I have come to the conclusion that I do not like neuroblastoma!! :) In the initial hours of my meltdown, I called home to talk to Zach and Brian (hadn't seen Zach for 3 days and that's the longest I have gone without seeing him, ever) and Zach said, "Mommy, when are you coming home--I'm sure daddy would watch Braden so you could come see me"! OUCH--this greatly added to my self induced cry-fest. Then this morning, after I gave Braden a bath and was changing his bedding, I accidentally pulled his NG tube out--just caught it on the arm of the chair and yanked it right out. I felt horrible and immediately began to cry yet again! This time, the nurses put me back together. It's nice how they all work together as a team!! :) It was decided that I needed a break. Brian was with Braden so I left to go get Zach and go to a doctor's appointment. I had to leave the medical team's "intervention" early to make my appointment and left my bag with my makeup, dryer, etc. in the room. I realized it when I reached the elevator but pride prevented me from returning to get it. Big mistake.

My appointment had been rescheduled to a plaza location and I had NO clue where I was going but I eventually found the tall building and turn the corner and WHAM...hit my tire on the curb. It was a hard hit so I checked it immediately once I parked and I heard a loud hissing sound...so I jumped back in. I drove like a maniac to try to find some type of garage/gas station or perhaps make it to my dealership on State Line and 435 before it went flat. I called to cancel my appointment and the sweet woman on the phone was trying to help me find a place to go but I was so lost I couldn't even find a street sign!! I made it to 85th and State Line where I pulled into a BP gas station (8507 State Line).  Once again, I began to sob. I was on the phone with my dealership who was politely explaining to me that my roadside assistance plan was no longer in effect so they couldn't help me when a man from the station knocked on my window and asked if I would like for him to change my tire. Thank you Lord! He changed my tire in the pouring, freezing rain and was SO nice about it. He would not let me pay anything for the repairs so just remember that Phillip at the State Line and 85th Street BP station is "THE MAN!!" I left, headed out on 435 driving, let's call it 70'ish, and was calling the BP corporate offices to commend this young man and noticed my hood was flapping. Yup--when I released my parking break, I also released the hood. I then called Brian (for the 500th time since leaving) to tell him I was okay and that all was well and that I was pulling over to shut my hood. I don't even want to know what he was thinking!

That was about an hour and a half ago and I have managed to take a shower, dry my hair with a travel size/folding dryer, and put on back up makeup (that's the old stuff from the bottom of the bag). Yes, I look like I'm ready for Halloween. I now understand that one really should throw away old shades of makeup instead of hanging on to them for "emergencies" because truly, no emergency is worth wearing bright pink blush. I will commend Estee Lauder on their promise of "waterproof" though--seems to be very effective! I am now eating leftover casserole that contains vegetables and I'm having a side of fruit. It's DELICIOUS even though that violates three food rules (leftovers because they turn mushy when reheated--this one really didn't, and vegetables and fruit because they contain absolutely no chocolate). I am going to get my four year old and we are going to have a wonderful celebration today--I plan to kiss him and hug him repeatedly!! He has his kindergarten roundup tomorrow so it's a HUGE day for him! Brian took clothes up to spend the night, and to date, I haven't stayed at home while Braden's been in the hospital so we'll see if I can do it. Maybe tonight is the night!?

So, Alexander, I feel your pain but I think the tide is turning. :) I thought you might enjoy the "humor" of the day! I am posting early so I can enjoy some Zach time today. I am officially proactively cried out for about two months-- or until tomorrow at Kindergarten Roundup, whichever comes first!! :) There's nothing that a shower, bad makeup, casserole, and a four year old's hugs can't fix!!

Deliece :)

How I Told Everyone About My Breast cAncer...

I have copied and pasted my post on Braden's Caring Bridge Site from February 17, 2010. 

It's the post in which I told everyone I had breast cancer.

I didn't have the energy to call everyone. I did send an email to my closest friends the night before the post. The only call I made was to one of my brothers and I asked him to call my dad. I just couldn't do it.  Everyone found out at the same time, with a handful of exceptions. Not really something I'm proud of, but it is what I had the energy to do.

I remember being mad, just mad...and so worried about how I was going to find time to go to my appointments while Braden was fighting for his life and had a less than 10% chance of survival.  I didn't give a crap about MY cancer, my only heartache and fear was for HIS cancer!

I knew how long and drawn out this process was, and I didn't want to miss a minute with Braden because we were sure he was going to die. I knew I would be in the hospital a lot but I was determined to get up and keep going so I didn't miss a single minute longer than I had to miss!

I was looking through my CB posts tonight and found this one...I hadn't planned on finding it, it just appeared.

I thought it would be an interesting one to share with you!!

We initially thought nodes were not involved, a couple of days after my mastectomy, we learned they were involved so I had a second surgery to remove more lymphnodes. That earned me chemotherapy, a lymphodema risk, and the loss of my long hair. That was what was the hardest for me. Otherwise, GAME ON!!!

It's hard to believe this was three years ago, it seems like yesterday...

...and at the same time, it seems like a millions years ago.

I still stand by my words, focus on Braden and do not blame God. He didn't give EITHER of us cAncer!!

Hugs! :)

Hi Army,
I know many of you worry when I post earlier than I had planned but everything is okay with Braden. I do have news for you though and I thought it might be better absorbed tonight when many of you are at home rather than tomorrow at work. It probably just easier to read it when you have more time.

Five days before we left for Braden’s second MIBG in Philly (beginning of January) I found a lump in my right breast. I went to see my OB before we left, who also felt it. We began all of the testing once we returned from Philly. This Monday, I got the call that the biopsy results were in and it was a malignant mass. It is a stage 1, grade 2, invasive ductal carcinoma. The pathologies came back the day we met with the breast surgeon and it was relatively good news. For those of you who have gone through breast cancer or know someone who has, this tumor is receptive to estrogen and progesterone, and the HER2-neu is negative (level was positive one). The ki67 level was 9% and they want it to be less than 10%. If you are like me and really wouldn’t know what those meant before now, this website was very helpful to me in understanding what this stuff really is.http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_breast_cancer_diagnosed_5.asp
if you are interested in more info. The bottom line is that the pathologies were favorable for a good prognosis.
I have elected to have a double mastectomy. We don’t think there is cancer in the left breast yet but I do not want to take a chance of developing it later on in life. Once you have breast cancer in one breast, you have an increased chance of getting it in the other one. I will have an MRI next week to help us confirm that the left breast looks okay and get more information about the lymphnodes. Right now we do not believe they look like they have cancer in them. The MRI will tell us more and when they do the surgery they will do a sentinel node biopsy to find out for certain. If you want to pray for something specifically, pray it is not in the nodes. I stand a better chance of not needing chemo if it’s not there. I’m not afraid of chemo but you know as well as I do that I would FAR rather spend my time with Braden and Zach right now than hooked up to an IV pole. We still do not know how long Braden has left and I don’t want to miss a minute. We will figure out what other treatments I need post surgery and with additional genetics information I will be getting as well.

I will meet with a genetic counselor in the hope we can learn other information through testing that will help determine treatment after surgery and whether or not this could be something that the boys could get later. Yes, males can get breast cancer. I do not have a history of breast cancer in my family but I could be the first to start the chain. I will meet with the plastic surgeon and genetic counselor the day after we return from Philly. We think surgery will be in mid to late March. I am aggressively going after this cancer! I am determined to win this battle! I have HAD it with cancer!

Who knows why these things happen. I’ve seen a lot of people put themselves through endless weeks and months of agony wondering why things happen. The truth is, I can ask that question but I’m not going to get an answer in this lifetime so it’s pretty much wasted energy to even wonder. I prefer to focus on enjoying EVERY moment we have today and letting the big questions/decisions be handled by God. I am NOT scared of this cancer. I have spent 2 years terrified for Braden and I’m going to stick with that and continue to be terrified for Braden but THIS cancer does not scare me. It’s tough to explain but when you are told you son who has only lived for five years (2 of those years being poked and prodded, having chemo/transplant/radiation, numerous surgeries and procedures and done to him) now has a relapsing, refractory disease for which there is no known cure, this just doesn’t seem that bad. It is certainly not a preferred diagnosis or future but the word the describes how I feel about things right now is simply determined. I am going to beat this cancer and it is going to be sorry it EVER messed with momma bear.

So how can the army help? First of all, please try to not be angry at God. This is not His work!! Performing miracles like having Braden Hofen with us today, feeling good and acting like a little boy should because he feels well enough to do it IS His work! We have SO MANY BLESSINGS! I know many of you will be angry but I am asking you to instead look at the glorious miracle God has given us. What I have is very beatable! Braden’s is not very beatable but he is STILL HERE! All in all…not bad!! So be thankful for us, appreciate life with us and celebrate each moment. I knew good and well that this was the likely diagnosis when I wrote the post about Braden’s Race on April 18. I was not kidding when I said that I want us to all celebrate together--even if you can’t be here for the event that day--we need to celebrate together. Yup--there’s bad stuff, yup--we are getting plenty BUT no matter what, we are thankful for what we have TODAY! I have said all along that none of us knows how much time we have--LIVE IT!!!!!!!!!!! Take detours and celebrate!! KEEP HOPING AND PRAYING FOR BRADEN! When we go back to Philly on March 2-3, we simply have to get good news again or we are done. We need to focus on that right now--it’s the priority--FOCUS ON BRADEN!! I believe in Braden and I believe in the power of thoughts and prayers and we have GOT to continue ours for him. Please keep spreading the word about Braden and continue to believe in him and in miracles!! I learned how to be brave and how to fight from my 5 year old, I also learned how to live every moment (even the cruddy ones) with joy and gratitude in my heart! We can do this too army--we can!!

Much love to you all!
Deliece

Zachism Saturday #6...

Saturdays are "Zachism Days".

Zach is our nine year old and he says and does the funniest stuff, without meaning to! :)

He always delays getting in the shower....

And then he delays getting OUT of the shower. :)

Mostly it's due to wars with his water gun and imaginary bad guys.

So I went up to his room this past week to see what the holdup was and found him dancing and singing Gangnam Style while viewing his performance in his mirror.

I just stood there and waited for him to see him out of the corner of his eye.

When he finally did, he froze...

And then continued his singing and dancing performance with...

"Heyyyyyyy, mom don't be mad

whoa whoa whoa whoa whoa wo po Zach Style....

......IIIIIIIII'm gettin' in the shower....

whoa whoa whoa whoa whoa wo po Zach Style...."

And I laughed and walked away!!

:)

Yes, it still took him another ten minutes to get into the shower!

Trent Green...

So I spent the afternoon yesterday with Trent Green.

Yes, THE Trent Green!!

WOO HOO!!

He was one of the Chiefs players who graciously offered to be in our 2012 "A Year of HOPE" calendar that our foundation did with 12 heroes and 12 Chiefs players. (our foundation can be found at www.BradensHope.org) :)

It was awesome!!

Trent was photographed with an extremely bright, courageous young lady named Hope. 

We all knew Hope was terminally ill while she took these beautiful photos. No one spoke of it, we just tried to make it a day that cAncer could never take away from her and her family. It was a detour! Hope earned her angel wings 3 weeks after this photo shoot, but you would have never known how weak she really was watching her smile and play that day!

She was amazing!

After the photo shoot at the airport, the man who owned the airplane, Paul, had another pilot take them up in the air for a personal flight!!

This man is perhaps the single most genuinely kind hearted, giving, caring person I have ever met!  I truly admire him and his beautiful family! I am thankful to have these people in my life! They are just incredible people who do extremely kind things just to help others while expecting nothing in return! They are my heroes in many ways!! Paul and his family own Harvest Moon Natural Foods in Olathe and they do SO much for our children with cancer! I could never adequately thank them for all the work they do for our heroes! This day, especially!

Since the photo shoot, we have kept in contact with Trent and I recently asked him if he would be willing to do the introduction for our showcase video for the Hope Gala on September 28, 2013 at the Overland Park, KS Sheraton.

He graciously accepted and yesterday, we shot the video.

To be honest, I had "met" Trent before the calendar shoot.  It was an up close and personal kind of meeting. :)

It was also a typical "Seriously!" story.

When Brian and I were dating, he took me to a KSU/KU basketball game in Lawrence.  It's no secret that I am a HUGE KSU fan!!

Four generations of my family have gone to KSU.  My grandfather, dad, brothers, and nephews. I wasn't able to go because when mom died my senior year of high school, we were in a bit of a financial pickle so I went to Fort Hays State and lived at home. It all worked out fine, but I still bleed purple!!

My brother, Shawn, played football for them and even before that, we went to many football games.

Once, when I was probably about 4 or 5, we were driving to the game.  My mom and dad were in the front seats (mom's beehive blocked a lot of the view...yup...it really was that high)! :)  We pulled up alongside a car of KU fans. My mom casually raised her middle finger up to them and my dad drove off.

They both giggled.

I silently observed.

So...after we got out of the car and were walking into the stadium, I saw a KU fan...

you know where this is going, right?! :)

And I casually lifted my middle finger.

I didn't know!!! I thought it was just how we said we disliked KU!!! LOL!! 

(I supposed it was, wasn't it?!) :)

My mom stopped me and ushered me away telling me that I should not do it again once I explained where I had learned it. It was "for moms and dads only".

Well..crap! 

But she did giggle!! ;)

So anyway, I'm at the basketball game standing in the gate of hell (The Phog) in my purple (one of about ten people) with Brian who was decked out in the colors of the red headed bluebirds and we stopped at the concession stand. I had never been in the fieldhouse before and Brian took great delight in showing me all of the KU stuff and Jay and BabyJay...barf!!!  Willie could eat them in one bite!! LOL!!

I got some popcorn and a drink, turned around, and started to walk back to where Brian was waiting. I was looking down at my pop to make sure I didn't spill any of it...

...and ran face first into...

Trent Green's chest!

OH CRAP!!!

Popcorn went everywhere and he smiled and tried to help me. I was flustered and trying to just escape and Brian was waiting for me cracking up!!

Awesome!!

I haven't told Trent about that initial meeting...I think we'll just try to forget it!! LOL!!

Trent taped the intro for the video (he did an AMAZING job) and then he spent a long time talking to the BVTV students who are creating the video. They each took individual pictures with him and they were SOOO excited!!

And I got not just one hug, but TWO! 

I'm considering taking a shower sometime in 2014.

:)

Seriously!

Multiple Sclerosis...

Yup, I have MS! :)

I was diagnosed in January of 2000 and I have been giving myself shots of Betaseron every other day since then (well, except for when I was trying to get pregnant or actually pregnant) :)

Lots of people ask me what MS is and the easiest way I can explain it is by using the analogy of an extension cord.

The nerve endings in your body are a lot like an extension cord. They carry the messages/electrical "sparks" through them to their intended source to do an intended job like moving your leg, or speaking, etc.

When you have MS, the orange covering on the extension cord wears thin and the messages through your nerve endings start getting lost and either do the wrong thing or do nothing.

Over time, your body heals those thin spots (if you are lucky and have a "good" kind of MS like I do...I have relapsing/remitting). The problem is that each time your body has to heal those nerve endings, you build up scar tissue and that acts like a brick wall for nerve synapses and then things don't heal, which is what causes irreversable damage and loss of motor functions.

You can have "lesions" in several places in your body including your optic nerve, spine, and brain. I'm one of the lucky ones who just has lesions on my brain. Every 2 years, I have an MRI to measure them and see if they have grown.

They have changed a little, but not bad considering that I didn't do my shots very often while Braden was in treatment at the hospital. They make me VERY sick (flu-like symptoms) so I administer my shot right before I go to bed and sleep through most of the worst of it. I do have to take Ibuprofen the next day for extreme headaches and body aches but every other day, I'm good! :)

It's a good trade off. I get to remain mobile and only feel like crap 3-4 days a week as a result. I'll take it!

I have two triggers for my MS, fatigue and heat. I didn't get a lot of sleep while Braden was inpatient for that year and a half, and I didn't want to be sick all night while trying to take care of him so I skipped them a lot. Yea, my neurologist knows and she wasn't pleased but she couldn't blame me. :)

The heat trigger is why I do NOT enjoy summer!!

At all!!

Last summer in Kansas, it was extremely hot and I was in a lot of pain and I was exhausted most days.  It's the first year I've really been that miserable. We detour every day, at least one detour and when it's that hot, we have to detour inside which is a downer. It all works out, but still...frustrates me!

Winter, fall, and spring I'm much more comfortable!

There is the little issue of my balance...it sucks.  Plain and simple. 

I fall frequently and when I tried to go out dancing with some friends, I had a hard time doing Cotton Eyed Joe (which pissed me off) but as long as I don't have to walk a straight line or stand on one leg, I'm pretty much okay!!

Okay...I'm not but I would like to THINK I was...I really have a hard time with my balance and I'm sort of like a weeble...

except I DO fall down!! LOL!!

I only have to visit my neurologist once a year! WAHOOOO!!! :)  That means I'm on the "good" list!

There are a few things that affect me with my MS but for the most part, you wouldn't know I had it!

The way I knew there was something wrong is that I had a band of tightness around my waist, it felt like someone had a great big belt around me and was squeezing it as tightly as they could.

Oh, and...my entire lower body went numb. :) 

I thought it was my back so I went in for an MRI and they told me two things.

1. My spinal column was 90% compressed from a herniated disk and I needed surgery right away. I had surgery 3 days later.

and

2. There were lesions on my brain that indicated I had MS.

Crap!  I could have done without the second one! :)

Brian and I were dating at the time, and I remember telling him that I would completely understand if he didn't want to sign up for this.

He stayed in the game....  :)  Actually, the first neurologist I had explained what "she" had and what "her" options were to Brian while I was sitting right there. I explained we were dating and I was right there...in the room...and after we walked out of that meeting, I found a new neurologist.

Smooth move Dr. Igit!! :)

Outside of the side effects of Betaseron, the big red welts each shot leaves for about 3 weeks, the nastiness on those hot days, and the fact that my balance completely SUCKS, I'm all good!!

I'm VERY lucky!!

VERY lucky.

My neurologist (who I LOVE) said not to even look at any of the scales that show the stats about what will happen to my mobility in the future, she says I'm going to blow them away.

I'm with her...MS is not going to win!!

HOPE! :)

You Saved My Heart...

The other day, I was doing the Evil Twister Workout (described in this blog... http://deliecehofen.blogspot.com/2013_01_30_archive.html)

Braden was home and he wanted to do it with me.

I knew it was a bad idea because even I can't keep up with left hand here and lunge right and...smile..."are we having fun yet?" 

No Evil Twister Chick, I'm not having fun!! :)

Braden tried but when he can't do something, he falls on the floor and cries and says, "I can't do it!!".

Doesn't matter how insignificant whatever he couldn't do was, he is upset because he can't do it!

Then, my sweet boy did what he always does. He got up and tried again.  Then fell on the floor and again said, "I can't do it" and cried.

That continued for some time. I tried to talk him down but there was no fixing it...there never is...

Braden Hofen does not know how to give up.  He will NOT quit trying no matter how hard it is and I'm pretty sure that is why he is still alive today!

Finally, the workout was over and I shut it off. Braden got up, picked up the five pound weights, and with swollen eyes lifted them up and smiled and said, "Look at me, I'm doing it!"

I told him he was doing it and we clapped and hugged and he was smiling from ear to ear.

Then while I was still hugging him he started crying again, took my face in his hands and  he said, "Mom, you saved my heart. I love you!" and gave me one last big hug.

I looked at him and said, "No buddy, you saved MY heart!"

And then he ran off to play.

It's true.

He did save my heart!

Before the cAncer mess, I thought I had things figured out in life.

I had a great career, two wonderful children, an amazing husband, a safe home, and food to eat.

Braden taught me lessons I didn't want to learn. I certainly didn't want to learn them through him having cAncer, but he DID save my heart.

I didn't even know I was missing anything in my heart until the cAncer mess.

Braden taught me how to be strong and courageous. He never quits.

He taught me to live for joy, even on horrible days. See the positive!

He taught me about detours and that life isn't about the places you arrive, it's about the journey!

He taught me to be GRATEFUL for every single day. For every single day!! Even the bad ones.

He taught me to fight and never quit.

He clarified for me that God doesn't give us the bad stuff to punish us or teach us a lesson, God is our salvation and grace. God is our HOPE! God is good all the time!

He taught me to have an appreciation for life.

He saved my heart.

I "knew" these things, but I didn't LIVE these things like I should have until, Braden saved me.

He was 3.

And he has autism.

There's a lesson in that for all of us.

It's not about how old you are or how many education degrees you have.

It's not about money and notoriety.

It's about having a heart that is pure and knows how to truly love others.

It's about fighting for what is right no matter what!

It's about enjoying every minute you have on this Earth because it can all end tomorrow.

Stop, think, love, and appreciate.

cAncer, you lose!!

Zachism Day..#5

Each Saturday, I will share a "Zachism" with you.  Zach is our nine year old and he's pretty funny, and he's not trying! :)

This week, Zach was listening to a commercial and a tune came on.  He said,
"Hey....I know that song!! It's the song that plays at the end of Wreck It Ralph during the credits!"

We've seen it one time,

at the theater when it came out this past year.

One time!

My response was,

"So Zach, what's 8x7?"

We do math facts every single day and he really dislikes it and thinks it's borrrrrrrrring.

My question was followed by a looooooong pause...

followed by , "Heyyyyyyyyy!!!  That's not funny mom!!"

My point exactly buddy...

Exactly!! LOL!!

Happy Saturday!