To Believe...or Not To Believe...

To Believe or Not To Believe...

That is the question...

We just got really good news about Braden.

July 8, our 13th anniversary, we were told that Braden had several weeks to a few months left to live. There was nothing to do. Our teams in Kansas City and Philly had never seen a child survive with treatment induced MDS that had fought neuroblastoma.

MDS is a pre-leukemia that will turn into AML that was caused by the treatments he has had to cure his neuroblastoma.

I posted that on our caringbridge site and a few people reached out who knew two kiddoes in the US who had made it through treatments and had shown no evidence of MDS or neuroblastoma.

I connected our teams with the teams that worked with those kids and they chatted. A decision was made to put Braden on a medication called Azacytadine. Vidaza is the product name. It's a chemo that is injected at three week intervals...3 shots every night for seven nights in a row.

He has been so brave about those shots.

SO brave!! He never cries, he is amazing!!

He has had three rounds of Vidaza and we were preparing for a fourth, but He didn't make counts. So we tried again...and again...and he has still not made counts.

His white blood cells were what was suppressed...they were very low and that can be a sign of progression of the MDS.

We did a bone marrow aspiration so we could have cells to count and see if his disease was progressing and if so, how much.

And we met with our transplant team to discuss what we would do for transplant (the only curative treatment for his MDS...also the treatment that could allow his neuroblastoma to come back due to donor cells that don't have the ability to keep dormant neuroblastoma cells quiet if any are there).

We are fortunate and we do have a bone marrow donor..there was ONE match in the registry...ONE.

I had gone to the store and bought everything I would need to have for 30-60 days which is about how long transplant will take in the hospital.  Locked away in the hospital for that length of time.

I had our carpets cleaned NOW because you can't do it right before you come home from transplant...it could create mold and fungus in the carpet and that could kill him. He is taken back to having the immune system of a fetus after the chemo that is given to him to kill the cancer cells.

And then our basement flooded, destroying the carpet.

Awesome.

You also can't have live plants, root vegetables, go outside without a mask, go in crowds, have guests in your home that have been exposed to sickness....and the list goes on and on and on and on....for 100 days following transplant.

I was ready... I had everything ready to go so when we got the result back and found out the disease was progressing, we could enter the hospital and get started.

I ordered Christmas pajamas, I had Christmas gifts purchased, Christmas cards ready to go, family pictures had been taken...

Everything was ready,

but me.

Transplant could kill him and it will absolutely, positively change his long term health. He WILL have side effects and he will NEVER be the same again...he will have some level of Graft Versus Host Disease... Exactly how he will be impaired is yet to be seen. And if the neuroblastoma comes back...

it's going to be very bad because trying to fight it after his body is weakened from transplant...

not a good prognosis.

We waited for six very long days to get results and yesterday we got them.

I was NOT ready for what we heard.

In August and June when we did his bone marrow tests, 200 cells were sampled and 18% of them showed MDS cells.

They initially sampled 500 cells with this test...zero of those cells were MDS cells.

Not believing that, they sampled 500 more.

Zero of those cells showed MDS.

Zero.

And the result we got back was that Braden's MDS is stable to better.

BETTER???!

I had no idea it could GET better? I don't think that was anyone's hope or goal...I think every person on our medical teams in both KC and Philly were hoping to just slow it down. They never mentioned Vidaza could actually kill the cells!

After asking our oncologist 100 questions, I have learned that the sample could just have been a sample that didn't show any..but there could still be cells there. SO we will have to sample over time and see if it remains zero.

And hope!

I should be thrilled...over the moon...happy beyond belief...

but I'm waiting for the other shoe to drop.

Waiting for the phone call saying, "about that sample..."

"we mixed up the results with someone else..."

"we are really sorry but we made an error in the lab..."

I'm a hopeful pessimist.

I want to believe it, but my guarded momcology heart says "don't fall for it..."

Our oncologist keeps telling me to be happy.

For the record, I have smiled...and then I stop.

I took the boys out for pizza last night to celebrate and I was staring at Braden while he and Zach played. My heart hurt so much because I was so conflicted.

And right then, I heard the words "Just Breathe" come across the sound system.

Faith Hill's song was playing.

I think that was a sign from our angels that I need to "just breathe".

I just started laughing and the boys looked at me like was insane.  Okay...they could be right. ;)

I'm trying to breathe...counts on Monday will tell whether or not his counts are still down. They believe it has likely been a virus that suppressed his white count (he was sick for a few days) and that the Vidaza had a lasting effect in suppressing the counts.

If we get better counts on Monday, I will breathe easier.

If not, I'm likely to ask for a bone marrow biopsy rather than just an aspiration.

The past six years of our cancer battles have led me to believe completely that the power of positive thoughts and prayers can change the world.

I am reminded of Matthew 17:20

..."For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.”

I stand in awe of God. And I am grateful beyond words!

TAKE THAT cANCER!!

Renewing a Driver's License 101...

So I got a card in the mail two days ago notifying me that I needed to renew my driver's license.

I was afraid. Very afraid.

The news has been covering this ridiculously inefficient system  and the long waits it has produced for several months now after the State of Kansas put in this brand new "whoopty doo awesome" system.  It has been a complete cluster.

Awesome! Couldn't WAIT to go!

My license doesn't expire until October but I learned long ago with this cANCER mess, you do stuff now because later might be a different situation when you CAN'T go.

That, and I'm a type A personality. I cannot STAND to have things on my "to do list".  ;)

Okay, okay.... to be completely honest, you have to bring the little postcard they send you in order to renew and I was certain that I would not be able to keep track of it for that long. :)  And I had no idea what they would do if I lost it...I think that's an automatic "go to jail" penalty. LOL!

I was supposed to bring the postcard (that was mailed to me by the State with my address on the front), my old driver's license, money to pay the fee, and proof of residency---which could be a piece of mail that had my address on it from a government agency.

Hmmm...seemed redundant because the government mailed me the postcard I was supposed to bring....

?????????

I followed the rules and found my vehicle registration paperwork and had it in my purse ready to go to show proof of residency for fear of it being like hitting the wrong spot on Chutes and Ladders and sliding all the way back to the beginning...or hitting "go to jail" in Monopoly...well the old Monopoly...I hear the new one doesn't have that any more.  Because why again??? It's a freaking GAME...not real life... SHEESH people, stop getting your undies in a bunch over going to fictitious jail in a BOARD GAME!!!

Insert eye roll and sigh...

Meanwhile, back to the DL Bureau, part of our "new system" is an online login system that allows you to save your spot in line and then you just go to the DL Bureau at your designated time.

Slick!

SO the system opens at 7:00 am. Tuesday morning, I logged in at 7:10 and it was going to be a 5 hour 11 minute wait.

WOW!!

That wait line filled up fast!!

Five hours later wasn't going to land at a time that I could be there so I decided to login FIRST THING this morning.

At 6:58, I started trying...kept pushing refresh every 10 seconds or so.

I got in just as it "opened" online at 7:00...the wait time was already 1 hour and 36 minutes.

Seems like I'm not the only one who learned a lesson...the people who got  in line on Tuesday probably figured it out on Friday when they missed it (they are closed on Monday)...and all of us Tuesday losers figured it out for Wednesday...

The computer screen said they would text me when I was first in line.

(it is several hours after I left the driver's license bureau and I still have not received a text to tell me I'm next in line...note to self, don't rely on that system). ;)

Okee doke...I'm on it...8:36.

Actually, I figured I better be there a little early in case they called my number and I wasn't there and I got bumped out of line and had to wait 7 hours because "I snoozed and I loozed".

SO.....Brian took the boys to school for me so I could make it a few minutes early.

You know...in the event they were running ahead of schedule.

BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!

I walked in and it wasn't busy at all!! Just a few people sitting in a sea of chairs.

AWESOME!!  Maybe I WILL get in early?

BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!  Again...

I then noticed the scrolling monitor, I found my number and I had a 32 minute wait. No biggie...at least I hadn't missed it.

Then I hear this electronic "ding" and a voice say, "Now serving number "1234" at desk 2".

It was an annoying announcement system. That pseudo-sweet voice and that damn ding every minute or so. I wanted to find the electronic voice and smack the crap out of it! :)  It was the same calm voice that I remember hearing Nurse Ratchett from "One Flew Over The Cuckoo's Nest" use at med time.

I was wishing it was med time....or maybe mimosa time.

I also took note that there were 9 desks...only four are actually manned with employees.

Now I'm no Einstein....

But it would seem that when the news has done multiple stories about how inefficient the driver's license bureau is with this "new system" the state is using, you have a 5 hour wait if you log on 10 minutes after the system opens, and before 9:00 AM, every person who entered to sign in in person was being told they had reached their max of people they can handle for the day and they would have to come back the next day...or whenever... you MIGHT want to look at the system...

and fix it...

Perhaps even man all 9 of those desks???

Just a thought...  :)

I'm sure it's all funding related but really....

People take off work, rearrange family schedules and then have to do it again because only 4 desks are open?

I guess "open" is a relative term.

I need a job like that...one that makes no apologies just tells you that you are too late to get in two hours after opening.

I felt the worst for the elderly couples who clearly did not understand how to log in on the computer to save a spot, had gotten all gussied up to come into town and had to go home. You could FEEL the confusion on their faces as they sought to understand what they had to do in order to get in tomorrow...

And I felt sorry for the Driver's License Bureau lady who had to tell each and every one of them that they were too late...unless today was their birthday, she could have them file for a 45 day extension in that event.

She did not receive a lot of love and appreciation.

I understand that.

But it wasn't HER fault...she was the messenger for a broken (and stupid) system.  I made a note that I would not be applying to work at the DL Bureau anytime soon.  Parts of her butt were being bit off with every person she turned away and the ones that remained silent shot daggers with their eyes.

Again...perhaps manning those 9 desks would help?? I'm thinking like 100 desks...that ought to do it. :)

Finally, my number was called and proceeded to desk 7.

I kept telling myself to just SHUT UP until I got my license in my hands...just SHUT UP!!!

She asked for my postcard...good girl, I had it...and I handed her my driver's license...yay me.  I waited to see what she would do for proof of residency. She just asked if my address was the same as it was on the postcard, I said yes and she just kept going through the list of stuff we had to do to get the license.

AHA!!!!

SO the little yellow postcard DOES work for proof of residency!!!?

But why would they make such a big deal about "proof of residency"...  Reminded myself to just SHUT UP until I had the license in my hand.

That was hard for me to do. ;)

Then I noticed an Hispanic family a few desks down from me. I noticed them because I could see the flailing arms of the lady at their desk and I could hear her getting louder and louder.

She kept explaining about "proof of residency" and the yellow postcard.  From the conversation, which I was NOT trying to overhear a half mile away from them but couldn't miss due to the volume, they didn't have their card or proof of residency. I was actually glad to hear that because if they had their yellow card but had to provide proof when I didn't have to with MY yellow card and no proof, I was going to be pissed.

Whew...

But when they didn't understand what she was saying, she got louder...and louder...and louder...

Again, I'm no Einstein....

but YELLING in English to someone who doesn't understand much English is PROBABLY not going to make them understand English.

Somebody stepped in and helped and they nodded and left....

Guess they get to come back and try it again tomorrow with all the others who got turned away. I felt so bad for them!

My attention was drawn back to my desk lady when she asked me if the information on my current license was still correct...that included height and weight...

(Damnit, this was the part I wasn't looking forward to because last time I got my license I had stretched the truth as well so I'm like two weight gains into a weight listed on my license).

In my defense, maybe I will lose those 3 pounds...and if I lost 4, I would actually weigh LESS than what was listed on my license...then what? I'm NOT going back to this ridiculous line to make my weight a pound less....well...maybe five pounds less but not ONE. ;)

SO I nodded in affirmation that it was...

'ish...

I'm not proud of it. But it was necessary to avoid that long line again when I lose those four pounds. LOL!

I'm just trying to help the government out!

So we got done, I smiled for the camera, and she clipped my old license and handed me a paper printout and told me my real license would come in 60 days in the mail.

Damn....I wasn't in the clear yet to open my mouth, but even though I didn't have the actual license in my hand, I had to ask.

"So...I'm curious...why ask for proof of residency if the yellow card words for proof of residency since it was mailed to me at my address by a government agency?"

She smiled and said it was because some people go online and change their addresses to update it and any change of address would have to be verified.

I saw a lot of holes in that, but I didn't have the actual license in my hand so I shut up, thanked her and walked away.

And as I was walking away, a couple pushing a baby stroller stepped out in front of me. The wife said, "So...did you miss it..did they call you when we weren't here?"

The husband shook his head yes and said they had to go over to another desk to figure out what to do now.

The f-bomb may have been spoken by the mom...a few times.

I giggled and the mom turned around to apologize...

I told her I wasn't offended...

I understood.

Completely!

I am now heading for that mimosa.

Our Summer Vacation...

It is very difficult to choose the perfect vacation when you believe it is likely your last as a family of four.

We weren't planning on going on vacation this summer, it was just too expensive. We thought we might drive to the zoo in Omaha for a weekend.

Once Braden received the diagnosis of mds and the news that he had several weeks to a few months to live, a vacation to make memories seemed pressing.  And that is when people from all over the world jumped in to help.

Two friends of ours set up a fund online for our vacation. We had no idea they were doing this, and I think they may have been a little nervous about doing it...they were determined and we were very grateful.

That fund raised over $20,000 and we were able to go pretty much anywhere we wanted. We thought about things that Braden loves and that Zach would enjoy too...and we took climate and temperatures into consideration.

We arrived at a decision to go to LasVegas...no, not to gamble the fund double or nothing...for one reason only...to see the water fountain at the Bellagio. One of Braden's most favorite things in the world is fountains...he calls them "pretty water".  Then we would go to DisneyLand in Anaheim and see the World of Color water feature...lastly to San Diego to see Sea World and the ocean and take a boat ride on the water.

And that is just what we did. However, the story doesn't end there.

It's really just the beginning.

As if anything could really top hundreds of people giving up over $20,000 for a vacation and to pay medical bills which is EXTREMELY useful. It's amazing how those mount up even with great insurance.

That gift is beyond description...thank you to EVERYONE who helped!

As I said, the story only begins there....

Before we left, I had a lot of texts, emails, phone calls, and help from many people to make this as special as possible for Braden.

First, a very sweet friend helped set up a room at the Bellagio that had a fountain view. We could watch the fountains from our room and the first time he saw them, he flipped!! That was during daylight hours, and at night, he fought sleep so he could stay up to see it one more time.

The look on his face was the best.

And that evening, Las Vegas had a thunderstorm.

Seriously!!

Flooding, lightning, wind, the whole works. AND...a rainbow.

Thank you Miranda Grace.

We then picked up our rental car...it was supposed to be a Chevy...we freaked out when a brand new Mercedes Benz SUV was waiting in our spot!!  We double checked to be sure it was ours and then we made a break for it before they realized the mistake! :) LOL!!

UNREAL!!!!

We drove across the desert to Braden's delight..he loves cactus...and arrived in California to the Grand Californian Hotel...AWESOMENESS!!

We were once again showered with the VIP treatment thanks to a friend who helped us get that room with a view of California Adventure Park that was amazing. The roller coasters were right outside our room and we had a small view of the World of Color show from our balcony as well! :)

 Then we met this beautiful lady...the sister-in-law of Braden's preschool's teacher's friends.  Yes...follow that...point is that our new friend, Lisa, organized something we could never have dreamed of for Braden the next day.

Lisa is the Lead for the parade at DisneyLand and she got us a private meeting with Mickey Mouse!! UNREAL!!! THEN, she took us on a boat ride in DisneyLand on our own boat...very special. She left us and told us when to show up for the parade (and another show) where she had seats organized for us...

We showed up for the parade and Lisa was back...it was her day off!! Again, unreal!! She handed us this card that had the signatures of all of the characters in the parade!!

And as the parade proceeded, we got lots of waves and a few hugs from several of the characters!! Braden was full on freaking OUT during the parade. Screaming at the top of his lungs at each character, "IT'S ME...BRADEN!!  HI GOOFY, HI DONALD DUCK!!!!" and on and on and on.  He REALLY liked Donald Duck.

We left Lisa and rode a bunch of rides...the boys' favorites were the Buzz Lightyear Ride and the Star Wars Simulator (which we did SEVERAL times).

I got a text from Lisa telling me that something very special was being planned for Braden during the fireworks show that night...for which she had again organized VIP seating.

As we waited on the bench for the fireworks, a group approached up and told us that 12 special fireworks had been placed on the castle JUST for Braden. The actual fireworks had Braden's name written on them and they were not usually fired off...they were specially choreographed in just for him.

I cried.  And as we waited for them to start the show, they presented special "cast only" pins to the boys, balloons, and so many other special things!!

The fireworks were beautiful...my phone battery had died so I don't have pics but Brian does on his phone.  It was AMAZING!!!

But wait...there's more.

After the show, they swooped us off to a special room where we opened our eyes and right there, in front of us was...Donald Duck!!!

Not even kidding!!

And the room was FILLED with special mementoes from the gang at DisneyLand.  They had a photographer there and the next day we picked up a whole packet of photos they made for us!! It was UNBELIEVABLE!!!

We could honestly have never dreamed something this amazing.  Thank you Lisa!! It was a magical day!!

The next day we went to California Adventure Park and it was also wonderful...and the World of Color show is beyond explanation!! I felt that same way watching that as I did the first time I watched a Cirque show.  I highly recommend it!

Then off to San Diego where another friend got us a great deal on a room at Seaport Village with an amazing view!  We started at Sea World. More special surprises were waiting for us there as a friend has a friend who trains whales and dolphins there.  Pretty sure that is the coolest job EVER!!

Well...Wendy gave us a behind the scenes tour of the Dolphin Show and we got to meet them and touch them...and feed them!! SOO cool!! Wendy even organized it so that we got to go backstage at the Clyde and Seymore Show (sea lions and otters) to meet them as well! I really cannot tell you how amazing that was!! Touching and feeding dolphin, pilot whales, sea lions, and otters....WOW!!!! Everything I have of the boys touching and feeding them is video and that won't upload here.  Rats!

The next day we were off to LegoLand but FIRST, we got to meet up with some of our friends who moved out there (and who are now luckily moving back home!)  They gave us LegoLand tickets and lots of hugs!! SO much fun!! And we had a blast at LegoLand as well!!

Braden was getting a little worn out on crowds and no routine so we decided to do some things that had fewer crowds and required less "come on...we need to go now" stuff.  So we went to see the Midway ship which was right outside our hotel and went for a cruise on a boat...that was AWESOME!! He loved seeing the wake behind the boat!! And the Captain even let him drive!! 

The next day we did some small detours like Balboa park where we actually PLAYED at a park!! :)  And then we drove along the highway and found the beach. It was a real detour...we hadn't planned it but it was there so we stopped and did the Kansas Kids version of the beach without swim suits. :)

I took this picture of Braden and later saw that he has two shadows in it. For me, it was a sign. There is one shadow that is weak and wobbly and one that is strong and straight...I see it as the two sides of Braden...the one that is sick and the one that is strong...and the strong side wins.

I don't know if he wins on Earth or in Heaven but I know which way I'm voting!! :)

We flew to Phoenix from San Diego and on our two hour layover, we got to see Brian's parents...the boys were THRILLED to see Grandma and Poppy!! :)

And when we landed in KC from Phoenix, we had a very special surprise waiting for us.  KCI Airport, the City of Kansas City, Missouri, and SouthWest Airlines organized a very special treat for Braden because he likes water features so much.

They did a water salute to him...lined two airport firetrucks on the runway and sprayed the plane with a heart shaped arch of water. B was THRILLED!!!  This is a very rare thing...reserved only for retiring pilots, and war heroes...so meaningful and so beautiful.

I fought tears to tape it from inside the plane. I have attached a news story from KSHB 41 as well as video that KCI shot of the water salute. We simply cannot thank everyone who made this happen enough. Mark Williams, a parent of a BVSW softball player, is responsible for organizing this. We have never met him!! Simply remarkable!!

Here is the news story from JiaoJiao Shen who is a reporter who does so much for our children with cancer!! :) (and Braden LOVES her)

http://www.kshb.com/dpp/news/local_news/kansas-city-firefighters-offer-special-tribute-to-young-cancer-patient-at-kci


And here is the YouTube Video that KCI shot...it's amazing!!

http://www.youtube.com/watch?v=vWfXJ17cU2w&feature=youtu.be


It was a vacation that was beyond our biggest dreams and we cannot ever thank everyone enough!!

TAKE THAT cANCER!!!

Tomorrow reality hits again...we go to clinic to have his bone marrow aspirates and biopsy as well as begin his shots that arrived the day after we did.

cAncer hasn't gone away...but we sure got a nice break from it before we start the real battle!!

HOPE!!!

and then....

It just doesn't seem to end.

We got the results from Braden's bone marrow and got the PERFECT answer..no disease.  WOO HOO!!

What a HUGE relief...or so I thought.

SO...I emailed our team in Philly and they told me that they were doing further testing to see if Braden had a form of pre-leukemia and that would take 2 weeks of wait time for the results to come in.

UGHHHHH!!!!

And damn....I thought we were in the clear.

So we wait, but...there's more...

Seriously.

We go to Philly for scans on July 16-17...scared out of my wits but hopeful. It's entirely possible it could be in his body but not in his marrow so there's another scare.

We know that Braden can't continue the treatment he is on right now because it's either a toxicity or it's not working any longer....awesome.

He's been on that drug for almost 2 years and was supposed to have it for a little over one more year. The irony is that we fought to keep it and now we lost it during the same time frame they were scheduled to take it from us.

I keep thinking that we must have fought for it so that another child (because all the kids taking that drug get to keep it now because of our fight) needed it and it will help him/her.  It had to be for some reason because it was quite a battle with Abbott Labs.

SO....the question is this. IF scans come back clear, he could qualify for a different drug that is being given to children that have neuroblastoma and are in remission.

BUT...his blood counts have to come up within 120 days and if it's longer than a few more weeks, we would have to repeat the bone marrow aspiration for him to qualify AND I haven't had a chance to fully review the data yet....

Well..I've had a chance. I just haven't.

I've been pouting and sulking and worrying....

and detouring!!

There's no rush because he can't qualify right now anyway until those platelets come back up so I'm choosing the later list of things to do. I ROCK at at them ALL!  But...I'm especially good at pouting...

There's a reason.

This new treatment could be done in KC which is nice BUT it means our Philly team won't be in charge of our treatment plan.

I really didn't realize how big of a deal that was to me, but it's HUGE!

Dr. Mosse has been our saving grace and that team has my complete trust...100%.  Okay...97.999%...I'm always skeptical of everything so I need a little room for that. ;)

On the flip side...I give Dr. Neville in KC the same amount of trust...she ROCKS and I absolutely adore her AND believe in her work.

I am literally mourning the potential loss of Dr. Mosse and team as our Principal team.

And at the same time, I'm thrilled to think Dr. Neville could be doing that role...she really is amazing.

So to transition my heart and mind, I'm pouting, sulking, worrying and most importantly...detouring. I need a break. I've been working 24/7 for a whole lot of months and the boys are off school and deserve to have a mommy who plays with them so I'm taking a break..a much needed break....but that break is for multiple reasons, not just about playing, it's also about sulking and pouting and worrying! :)

It's soooo complicated! LOL!!

In the meantime keep those prayers and hope coming in the event that he can qualify for this new treatment so we can really consider it. I just can't wrap my head and heart around hoping for it until it's even a possibility with clear testing results for the pre-leukemia, and clear scans, and....information about this drug that makes us think it's reasonable and helpful.

It's a roller coaster...this entire nearly 6 years of crapfest has been a roller coaster BUT...

we are blessed to get to ride...

The alternative is he is an angel and we don't get to even try.

We are VERY fortunate and that thought never escapes my head and heart.

And it also never escapes my head and heart that this is a REALLY messed up think to have to be grateful for...

cANCER...you suck.

And we will keep fighting you with everything we have...forever.

Keep hoping!!

TAKE THAT cANCER!

answers...

I don't have any answers yet.

We are still waiting for answers/results from Braden's bone marrow aspirates and biopsies.

And we will likely get those answers either tomorrow or Tuesday. I really suck at patience.

REALLY suck at patience...

And I have a sick stomach, worry in my heart, and a lump in my throat.

A third relapse would be devastating. Absolutely 100% devastating. And I know that there is not a thing I can do to change what the answers are going to be.

I have turned to the two things that I CAN control in an uncontrolled situation.

Dirt

and Detours.

I clean like a crazy person. I am in total control of dust and freshly lined vacuum marks in the carpet. And I am ROCKING that OUT!! :)

And we are taking detours. Braden had a rough go after his biopsy.  He was very sick yesterday morning and threw up a couple of times and needed a breathing treatment, not to mention the pain.

I asked people for prayers...and this morning he popped out of bed, walked around on his own with no grimacing and we went to the pool...we are now headed out to the arcade.

TAKE THAT cANCER!

Prayers work.

And I know we will get an answer to our prayers for this to be drug toxicity verses a third relapse in just a few hours but...

it may not be the answer we want!

It is strange to pray that it's drug toxicity because it could end up knocking him out of this trial...it's not 100% certain that it would but it is a pretty big possibility and then the thing that has likely been keeping him in remission is no longer a choice.

But that crapfest answer verses a third relapse answer is so much better...so I pray for that one.

cAncer...you stink. You really, really stink...  No one should have to hope for the lesser of the two evils.

I pray it's not a relapse. I plead for it to not be a relapse.

Please God...let him stay!!

I completely believe the reason Braden is still here today is because of the collective positive thoughts and prayers people have sent his way.

Everyone's beliefs are their own and we don't have to all believe in the same thing. I have a deeply rooted faith in God and that is how I center my energy and hope.

I think there's something to a group of people truly believing and hoping for our son no matter what your personal belief system is though. I can't tell you how many times I have literally "felt" that warmth and love from thousands around the world sending their own hope to our son.

I feel it now during these days of waiting and they not only comfort us but they encourage and somehow heal us.

IF we get bad news and it is a third relapse, there will be a "special" set of people who will begin thinking "so where is your God now Deliece? If God was such a wonderful being, wouldn't He/She save your son as you and countless others have asked? You say you are faithful and trusting but those two things really didn't seem to work out for you....your son is facing death yet again."

(People have actually said that to me before)

(...and I have thought it before...)

It's a valid question and concern.

I get it.

BUT...what I learned from Miranda's death, from watching Braden's friends die, from watching my mom die, from watching countless friends die, and being faced with "You need to spend your time well with your son because he's not going to get much more" more times than I can even count is this:

(and I'm going to sound preachy right now)

God is there.

God feels our pain and doesn't want us to hurt. I do NOT believe these things are given from God.

I do believe that there are reasons beyond my understanding that I will NEVER get in this lifetime for why things happen and why people die at certain times that seem so very unfair, wrong, and painful.

Someday, I hope I will get to Heaven and be able to get those answers.  But in the meantime, I know that God is there for me.

We may not get the answers we wanted tomorrow or Tuesday, but I know God is there and that He is answering my prayers even if I didn't get my way.

And I will try my hardest to remember that and not be angry at Him....rather to direct the anger to the one that I believe is responsible for cancer....

I do believe there are two forces in the world.  God wouldn't do this so in my heart and mind it's the other guy.

I will try...I'm still a work in progress and this is my son and when your heart is broken into a million pieces it's very hard to not blame and question.

I am trusting.

I am grateful for the time we have been given.

And I am hopeful that we will be allowed to have about 92 more years with Braden Hofen on this Earth.

100 seems like a pretty good number to shoot for.

PLEASE keep hoping, praying, trusting, and believing.

We CAN do this!!!

Skee ball...

I took the boys on a detour today. 

To Chuck E. Cheese.

It's likely you could hear me groan when I typed that.

Oh how that place drives me nutty. It's not just the incredibly ridiculous noise level...it's the crowds of people, the dirty coins, the smelly pizza, the tables that "were wiped once....long ago", the bathrooms (I won't even describe the mayhem in there), and the germs from every person who touches everything.

Yup..I'm a germaphobe...and a crowd-a-phobe (whatever the real phobe word for that is)...and a neat-a-phobe (like everything in 90 degree-angles-a-phobe). :)  

That place does not meet those criteria...it's the opposite.  And actually the one near our house is pretty clean and we go REALLY early when they open up so the crowd isn't as bad...

BUT it brings my boys so much joy to go there!! They LOVE it. Braden loves playing basketball and skee ball and Zach loves the shooting games.

So I follow along toting the bucket of coins...and then watch as they giggle while they feed their tickets into the machine to get their plastic toy crap that will be broken before we even pull out of the parking lot..true story. Happened more than once. :)

But the memories and the giggles and the happiness...totally worth pushing me outside of my comfort zone.

So...Chuck E Cheese made it on the Summer Detour List for 2013.  

Yes...we have an actual list and yes...we cross things off as we do them.  We have been doing that since Braden's diagnosis and it is SO much fun!! I know my days of having two boys will tolerate running around to various parks, pools, etc. with just mom are numbered so I'm soaking it in.  Zach's on the verge of being too old to be with just his mom and brother...he's going to have to suck it up a little while longer...and he can have friends come with us on occasion! Detours are more fun with friends!

Well today we went to hell...and the boys had a blast. 

I don't think they share my opinion of that place at all! :)

Crossed that puppy off the list! WOO HOO!!!

Braden spent most of his coins playing Skee Ball.  He's pretty dog gone good too!! And everytime he gets the ball into the corner 100,000 point cup, he squeals and screams, "I GOT IT!!!" and jumps up and down.  He almost made the record today!!

Every single shot he takes is aimed at the 100,000 point mark. He doesn't even TRY for the 50,000 or the 40,000...so when he misses it often rolls into the 10K mark.

He doesn't get as many tickets on some of his runs because when he's not "hot" and doesn't hit a 100,000 he gets a far lower score.

But he still tries for the big winning goal every single throw.

Pretty cool.

Obviously, we are all very concerned about Braden's test on Thursday. We've got a 50/50 shot of finding out that his disease has relapsed for a third time. 

If that is the case, any reasonable hope of him ever being "cured" is gone. The docs have been very clear about that.

And we go back into treatment mode...well...search for possible treatment mode...we don't even know if there is anything out there that we can do. 

I can't even wrap my head and heart around him fighting a third time so I'm living for the moment right now.

But Braden is Braden and there's no one in the world like him.  He has no idea anything is in question or could be wrong. Once again, he is just continuing to live.

Everything he does is like how he plays Skee Ball.  

He fights. 

He tries for the big win.

He doesn't even consider trying for anything less.

He is my hero.

And when I grow up, I want to be JUST like him.

As I watched him concentrating and working so hard to get it in the winning spot today, I started thinking that I want to approach life the way that Braden Hofen plays Skee Ball.

Throw for the 100,000 mark every single day, in everything I do, every single throw.

Why settle for less than 100% of your best effort each day? 

Each day is a gift...we should be thankful we got it and we should use it to try to make a positive difference in the world.

So thank you Chuck E Cheese.

And thank you Skee Ball.

Mostly, thank you Braden Hofen. Once again, you have clarified life for me.

I love you with all of my heart buddy.  

Mommy will ALWAYS try to be like you!!

You give me hope!

Prayers needed...

I don't typically post my CaringBridge posts on this site...but this one is an exception because our need is great. 

We need your thoughts and prayers for Braden.

Braden has not made counts for ABT-751 (his chemo) for 35 days. That is pretty unheard of for him. He's missed a week here or there but never for this long. It's only his platelets...everything else is ok.

The problem is this...suppression of platelets can mean disease in the bone marrow.

I've been breathing...his HVA/VMA have been low (but they can remain low in a relapse and not be elevated to indicate new disease).  And he's feeling good and happy...none of his usual "I have cancer" signs.

Until today. He missed counts again yesterday. I emailed Philly and asked what the plan was...would we do a bone marrow biopsy.

Dr. Mosse said that a few patients on ABT-751 developed a toxicity for the drug and that is evidenced in a drop in platelets. They give the patients 42 days to recover in counts before scheduling a bone marrow biopsy to check for a relapse of disease.

Next Thursday we are at day 42.

The plan is that we go in for counts and if platelets are at 75,000 (they were at 64K yesterday and have been uncooperative in moving for weeks), we will go home. IF platelets are NOT at 75K, we do a bone marrow biopsy that day.

It just got real again.

TOO real.

DAMN cANCER!!!  

SO...we need positive thoughts and prayers once again...lots of them. Every individual, every group, every single person you can think of...we need you.

We need the mountain to move.  

I pray and I cry to God to please allow Braden to stay....and at the same time I thank him for the time we have gotten. We should not have had these past 2.5 years...he medically should not be here.

We were given a gift and we have made the most of it. I feel extremely blessed and very selfish in wanting more time.  

I used to pray that he would get to have firsts...and he has had many. SO many of our friends have not been this blessed so I feel a little (okay a lot) greedy in hoping for more.

BUT...I DO...I HOPE and PRAY for more firsts!!

AND...I'm incredibly grateful for what we have been given.

We need you..I believe there is power in the army's positive thoughts and prayers...and I am calling on you to help us move that mountain.  

I will update next week on Thursday after counts come in and let you know what the next step is..hopefully it will be that we are on our way home and there is no need for a bone marrow aspirate.

And I feel the need to say this...I do NOT believe this scare and any potential relapse is the work of God. PLEASE do not blame Him.  I believe there are two forces in the world and this is definitely the work of the other guy.  The God I serve is loving, caring, and compassionate not this. He does not make us worry, fill us with fear, and sadness...that's not his M.O. in my mind and heart.  He will see us through this...no matter what the news is on Thursday.

HOPE...PRAY...BELIEVE!!

The mountain MUST move!!!  No other option is acceptable...I believe in miracles because I live with one...and I believe the mountain can move!

And...please keep our friends the Bennetts and Grindels in your thoughts and prayers as well. Paul Bennett died on Monday due to a heart attack. He was quite possible the most amazing man I have EVER met. His generosity, love of his family, positivity, generosity, and capacity to do good in the world are unmatched. 

With HOPE, love and thanks!

Deliece :)

The Short Bus...

Yes, if Braden rode a school bus, it would technically be what some people call “the short bus”.

I stopped being upset by that term years ago, but I still don’t like it. It doesn’t build people up…it does just the opposite.  

It’s just like the word “retarded”…I don’t get why people use that to be derogatory when it is so hurtful to people with children with low cognition.  

Not cool.

Braden had his “three year re-evaluation” and annual IEP a few days ago.  That’s always a big meeting because every three years, they have to “prove” that he still needs special education services and then target his new needs from the growth (or lack thereof) he has had in three years.

The report was sad because it pointed out so many things Braden Hofen is not good at, but it also is happy because it shows how far he has grown.

As a teacher and then Principal, I used to get frustrated when parents would act like the severe deficits we were showing them were no big deal and just more news. It felt like they were choosing to not accept the fact that their kids had those big deficits as they focused on “all the growth they have made”.

Well…

I get it now.

Hearing those deficits didn’t crush me;  I merely ignored them. I did read the report.

Most of it.

Sometime I got tired of hearing how bad things were and how poorly he scored, so I skipped those pieces after the first couple of sentences.

I get it…

He’s very delayed.

Extremely delayed.

And it’s their job to provide those data to show where he is currently functioning. Our team is FANTASTIC and I admire and value each and every one of them. They don’t mean any harm or to be negative or mean at all, just as I didn’t when I was in their shoes.

BUT…the Braden Hofen I know can do so much more than those tests showed. It’s just that we measure ability and strengths in one way…standardized tests and informal tests…common element of “tests”.

When he was three years old, when he was trying to say “mama” he would say, “ma…. And I would literally slowly count to 10…then came the second syllable….ma”  Now he talks non-stop at an appropriate pace!! AMAZING!!

He’s very delayed from his peers, I am not ignoring that and I’m not kidding myself but from when he started to where he is now…holy smokes!!  Just AMAZING!! 

I choose to focus on that!

I choose to focus on the gifts he brings….and I do get the deficits…but I want to make sure everyone else gets the amazing growth. Those deficits really ARE no big deal!

I “GET” it parents of mine from all the years I was in the Principal/Teacher seat. 

And I’m sorry I didn’t “get it” then!!

So much of what Braden knows is in his brain…it really is in there but his brain has a hard time outputting that information on a test.

And every time a parent used to tell me that I thought to myself, “You are in denial.  I appreciate that you believe in your child but we don’t see the same levels of functioning here that you are describing. Please listen to us when we tell you how far we have to go.”

So as I approached this meeting, I prepared for it.  I assumed they would roll their eyes, smile, pat me on the back and send me on my merry way. Which is kind of what happened.

Complete role reversal. 

Total 180 for me. And I had to laugh at the irony.

I had specific examples…so when they said that they were going to work on word problems with addition and subtraction and what a stretch that would be for him and how hard it was because of his delays and things that are not strengths…

I pulled out the book we had read the night before. One of the pages had three bowling pins lined up and one had fallen over.

Braden stopped me from turning the page and said “MOM!! Look!  There are three bowling pins, one fell over so take it away. How many are left?  Use your touch math!” 

Shock and awe…all around the room, well except for the three that knew him the best who just smiled and shook their heads in agreement.

Much of it is in there. 

I’m a realist, not everything is “in there”…but a lot more of it is there than we think.

The trick with autism is finding the way to unlock it to let it out so WE can see it.

Three years ago at his last re-eval meeting, I didn’t care what his goals were or what they wanted to do because I didn’t think he was going to live to see first grade. The words on that page didn’t matter.

I still don’t know that he’s going to be here for his next annual IEP or three year re-eval BUT…since he IS here and is in remission right now…we are hoping for it.

And we are continuing to search for ways to unlock all of that stuff and get it out.

He’s a bright boy. And we have a team that believes that he IS bright and capable and they won’t give up on him.

A mom can’t ask for more.

So no short bus for my B-Man….

I think he should have a stretch limo…

because to his momma,

he’s kind of a big deal!

TAKE THAT cANCER!

TAKE THAT cANCER...

That's the title of my new book...yup...a BOOK!! Unbelievable!

TAKE THAT cANCER...A Mother and Son's Journey to HOPE

Mrs. Schmeller, my high school English teacher is laughing right now. I could never get an "A" on any work I did for her...I'm pretty sure this book wouldn't be an A but it comes from my heart. :)

It's the story of our dual cancer fight, about how you have to fight with your gloves off, and about hope and faith in a God who loves us more than anything.

It's 5 years wrapped up into 110 pages. That was no easy feat...

As you can see...I like to type...words flow...too many words :)

So I had a co-author, her name is Maureen Rank and she was a gem. She helped me get things into a structure so I could feel what I really wanted to share and what really was important. I have thousands of pages of writing over the past five years and every page was important to me.

I'm not good at "thinning" :)

Once she had the format worked out, I could then write and literally feel what I wanted to say. I had no plan...I just wrote from my heart.

Hopefully, the book will give you courage and uplift you. It will probably make you shed a tear or two and I hope you fall over laughing at times too!

I expected to have a book when I was done, but I did not expect for the process to change me and help me grow. It did.

In so many ways, I feel like I have been able to wrap that package up and put it closer to a shelf. I'm not sure it will ever make the shelf...I don't think cancer fights work that way...but it is in a package, with a big bow!

Five years of battling, crying, laughing, detouring, living....

What a blessing to be able to write this book and have a story that is continuing for now!!

BLESSED!!

If you are interested in seeing the book and reading the back cover description please visit www.BradensHope.org and click merchandise. The book is $11.99 and we will ship it out to you right away for $2.00 extra per book.

If you live in Kansas City, you can pick a copy up at Outside The Box Gifts in the Rosanna Shopping Square in Overland Park 11616 Metcalf Avenue (right beside Mardel). You don't have to pay S&H that way AND we will have them for you at the HOPE Walk on June 8 at Frontier Park in Olathe. :)

They are on Amazon but if you purchase them from our website, we get to keep about twice the profit as apparently Amazon likes to have a big old share! :)

I hope you enjoy the book should you purchase one.

It feels so empowering to be able to write this story and put the past 5 years in that box...with the big bow...

TAKE THAT cANCER!! :)

Flower Gardens...

Memorial day has always been a weekend that my family meets up and goes out to decorate gravesites.

There have been several years that we haven't joined them because Miranda is buried in Iowa while my mom and other lineage are buried in Holton, Kansas and the surrounding area.

From the time I was little, Memorial Day has been a big deal in our family. We would travel to Holton, Kansas to spend the weekend on the farm with my grandparents. My grandparents lived in a very old farmhouse. They had running water but they also had a cistern well on the porch that we used for water needs that didn't involve cooking. I LOVED cranking that cistern well!! It was SO much fun to watch the wheel and cups go around and come back up with water to dump into the spigot.

We drank our water out of cleaned "Archie and the Jugheads" jelly jars that had turned into glasswear, we had bread and butter on the table at all times that we ate with every meal, lava soap near the sink to wash with, chicken and dumplings that Aunt Kate made every year, Grandma's apple pie (and I got to eat the extra crust pieces she baked with cinnamon and sugar on them JUST for me), and I got to be a total tomboy all weekend in the out buildings and pastures and ponds.

At night, we slept in beds that we had to "air out" to make sure there were no mice in them...and we used chamber pots in the middle of the night. Really!!  We even had bowls and pitchers upstairs for sinks to wash our hands and faces in.  The cellar was filled with canned fruits and vegetables they had grown. They had one black and white tv with rabbit ears that got one channel in very fuzzy after it took about 5 minutes to "warm up" although I don't really remember watching tv there because we were way to busy playing outside.

I have great memories of being at my grandparents' for the weekend!! As we grew older, and so did our parents, we often got to stay in town at a hotel to avoid those mice in the bed, but it was never the same. It was also air conditioned and that wasn't all bad either! :)  PLUS..the lobby of the hotel had a COLOR Television that had Charlie's Angels on it..and Fantasy Island. We couldn't get those shows on our television in the country at our house so it was a HUGE treat!

Well, this year, we had just been to Miranda's grave in Iowa so we elected to go to Holton. We began our tour de cemetery with the Holton Cemetery were my mom and many other relatives are buried. The cemetery is always beautiful on Memorial Day weekend. The flags are just stunning as you drive down the aisles lined with them.

As we drove into the cemetery, Braden said, "Oh...the flower garden!!" I loved that!! Yes...it IS a flower garden this time of year and it's such a happier way to look at a cemetery!! Smart boy!!

We stopped first at mom's gravesite and the boys put flowers on her grave. We always tell her thanks for watching out for Braden and taking care of Miranda. I admit, visiting gravesites with Braden is a little strange because every time I wonder if next year we will be visiting his grave.  It's a very sobering, eerie feeling.

Decorating graves was very important to my mom and she instilled in us an importance of making certain that we continued this tradition long after she was gone. We have done so. I know mom is smiling about that. I'm much to afraid to not do what she asked! LOL!!

We stopped at the graves of some of our relatives that I never knew. The latest they died was in the 50's...and I'm not quite that old. ;)  One of the graves is that of Leah Johnson. Now I know they have told me about 100 times how she is related to us, but I can't remember.

Anyway, her nickname was "Bone Crusher" and I hear she was a spunky one! I think I would have liked her and it's highly possible I got some of her DNA. Okay...a lot of her DNA. My brothers said that she used to have a big electric vacuum broom and she would give kids rides on it. She was a spinster as far as they can remember and she sounds pretty awesome to me! :)

Leah once told my mom to never, ever put artificial flowers on her grave. Ever! :)  My mom used to put them on her grave every year just to be ornery. Well...every year mom would cut her finger on the flowers somehow. She would always say, "Now don't poke me this year" before she put them in the ground and it never failed...she always drew back with blood on her hand. The boys told me the last two years she decorated her grave, she didn't get pricked. They thought Leah was giving her a break! :)

All I had was artificial flowers.

There was NO WAY I was going to put them on her grave. Not me.  BUT...the boys did it. I looked up at the sky and chuckled and said, "Okay Miss Leah...just remember that I was NOT the one who did it!" :)  And then I moved back a few steps from the boys incase lightning struck; they were on their own.

We then went to the Circleville Cemetery which is where my dad's side of the family is buried. I do enjoy looking at the graves that are really old to try to figure out the history. There are so many infants and children buried in those old graves. Well..beside one of the graves of a relative was one of those graves. Charlie who died when he was 2 years old in the 1880's. I asked if anyone knew who he was and they thought he was related somehow but couldn't place him exactly.

So Braden and I went back to the truck and got flowers and we decorated Charlie's grave. We have several older graves of little ones we decorate that are near our family plots even though we don't know exactly who they are. We sort of adopted them. No one else in my family puts flowers on their graves, I suppose because they didn't know them in person but they are family and they are kids and they need flowers. Period. (and yes...they look at me like I'm strange for doing that....whatever silly people!!)

Then we went to Olive Hill...it's a VERY small cemetery in the middle of no where but near our family farm.

Olive Hill holds the grave of my great Aunt Kate and her family.  Aunt Kate didn't like artificial flowers either so each year my brother and sister in law pick flowers out of her flower garden at the farm and take them to her. I still remember picking daisies, iris, roses, and smoke from her smoke tree to make bouquets every year at memorial day. She and my Grandma would carefully cover tin cans in foil and we would take a bucket of water with us to pour in the cans with the flowers after we carefully carved out a small round indention to fit the cans in beside the graves.  We also spent quite a bit of time picking gooseberries and wild strawberries for pies later in the summer!! It was a lot of work but sooo worth it! :)

Aunt Kate's sister, Ella, who died in the late 1800's and was only 5 is buried next to her so we put our pink flowers on her grave. And then we went to visit my favorite grave of all time.  This grave is of someone I don't know and she's not a relative but I go visit her every year we are there and giggle with her. I wish I could figure out how to turn it so you don't have to cock your head...but it's worth it, trust me! :)

It seriously cracks me up.  Maybe she was bitter or maybe she was just getting even...don't know but I still giggle!! You GO Marva. Chester...wonder what YOU did!! :)  LOL!!

After we finished, we went back to my dad's house and visited for a bit. Dad was having a great day and we had a really good talk.  Dad has alzheimers but was clear as a bell. He was able to tell stories about family members and knew what specific flowers we needed to put on each grave. This is a picture of my dad and the boys! :)

We headed home but stopped in Topeka to eat at Red Robin and got a Salted Carmel Shake to split between all of us. It was AWESOME!! :)

Memorial Day is about honoring those that died for our country, remembering those we love that have earned their angel wings, and detouring.  We accomplished all three!!

Oh...and visiting the flower gardens.

:)