I guess pink IS my new color!

The ER had a surprise Pink Out for me last Friday night!

Everybody wore pink, or a pink something-bandana, scarf, whatever!!  It was such a nice surprise and honor!  It made me tear up when I walked in the lounge and saw all of this:

One of the Docs who planned all of this said some very nice things about me, about how I handled my cancer and worked and always had a smile on my face and made this fight look easy.  Little do they know it was all the support from my family and friends that made it easier!  Going to work on treatment was a nice break to being 'sick', and made me feel productive!  Thanks NKCH ER for all your support and this awesome night!

Last week our hospital's Pink Glove Dance video was published on Medline's site too.  I had been asked to participate, but had no idea I would be featured as much as I was!  Mind you-I had just had knee surgery 2 days prior to this video, so as you notice I'm not dancing around as much as some people-note the bum knee!
  Please go to www.pinkglovedance.com  to watch and vote for North Kansas City Hospital's video.  If we win, our donation will be given to the Jennifer Ireland Foundation.  A foundation honoring a young woman who lost her battle to colon cancer, and now the foundation in her name helps other families in financial difficulties due to cancer.

I know October is Breast Cancer awareness month, and in all the support and PINK  I have seen all over the city, the internet, everywhere this month, I have also seen the negativity about devoting a month and a color to just one form of cancer.  I get it. 
I had a second mother lose her battle to Appendical Cancer-it has no special month and color.
I have a step sister who fought Hodgkin's Lymphoma-no special month and color.
My Mother-in-Law lost her battle to Liver Cancer-no special month or color.
My brother had Thyroid Cancer-again, no special month or color.
An uncle with Testicular Cancer-again, no special month or color.
I could, unfortunately, go on and on.
And prior to my diagnosis-even having a beloved Grandmother lose her battle to breast cancer-I know I didn't own this much pink!
I wish each form of cancer had a month and a color-but more than anything I really wish we didn't have any special cancer months or colors because that ugly disease had been eradicated! 
I think all anyone hopes for is awareness about this terrible illness that takes 40,000 lives a year, not wanting to take away from anyone else's type of cancer.   Awareness that simple things like a self exam or a mammogram could save a woman's life.  It saved mine.

As you know, my cancer was found by my annual mammogram.  But many of you don't know the story behind it.
I had my annual well-woman appointment with my Ob/Gyn Dr Morgan.  Now Dr Morgan has delivered all of my children, did my D&C for one of my miscarriages and helped me through 2 others.  We're pretty close as you can imagine.  We are joking about this, that and what not-who doesn't when your feet are in the stirrups???  He then reminds me I am still 40-but almost 41, and haven't had another mammogram since my baseline at age 35.  Yep, I know.  Go see Donna-Dr Morgan's nurse for forever-and a fellow copper wife-she will make your appointment.  Idle chit chat with Donna while she is on hold with Imaging for Women.  I'm thinking about when on earth I will squeeze (pun intended) a mammo in with the way my schedule is looking for the next few months.
Brian is due to have surgery on his shoulder, I'm working for the next 6 days, Hailey has volleyball, etc. etc. etc.  In the back of my mind I've already put it off til about May.

They can get you in today-in about an hour
Sure, why not?  I drive right by there on my way home and if not today-not gonna happen for several months.

Everything happens for a reason, and we all know the results of that mammogram.
Had they not gotten me in that day, and left it to me to schedule, would I be where I am right now?  I shudder to think. 
AWARENESS.  That's all any of this pink means. 
I can't tell you since my diagnosis how many other survivors I have run into-support groups, work, in public.  And how many of those women say they found a lump-but waited months, one even a year, before getting a mammo.  I'm guessing their lives would be different now too had they been more aware.
And maybe once all these crazy pink ladies-and men-wipe Breast cancer off the face of this planet, they can go to work on another one! 

So, as you can see, Pink is my new color, and probably will be forever.  And though it's not a sisterhood I ever wanted to be a part of, I am, and will fight for a cure for it as long as I'm alive, whether it be October or pink.

Now for some kiddo updates:

Hailey went to Wichita to go to Homecoming with her new beau Jonny, looking gorgeous as ever:

 

 

Parker has been taking golf lessons and is getting very good!

 

 

 

Ethan is finally WELL (knock on wood) and went back to school this week.  He  received a Special Olympics medal AND his new CD 'RED' by the one and only Taylor Swift came in the mail. 

 He's all smiles listening to it as you can see....

 

 

 

 

And the newest baby....well, he's still pretty darn sweet that Frankie...

 

check out his tongue while sleeping on Brian's lap!!

 

 

Discharged!

By the time Brian and I were heading back to town Sunday, Dr Waldman was calling me telling me she thought the bald kid was ready to go home. Though she didn't actually call him the bald kid- she called him that sweet boy of yours.  By the time we got down there, all his paperwork was done, and his nurse was ready to pull his IV and send us on our way. Fastest discharge from The Mercy ever.

Flashback to Friday night....my sister Kate went down to be with him at the hospital, and said he was yet still possessed. If she even looked at him he screamed. All he wanted to do was lie in his bed and rock out to Taylor Swift. Good thing Dad remembered to bring his CDs.  

Then I guess sometime during the night his feeding tube came open and in the yuckiness of his stomach contents they found blood. Surgery was called to do a consult, and they felt he may have had a bleeding ulcer. Hmmmmm. Ok.  So they switched his feeds off and put him on all Pedialyte.
He got another enema, fearing he was still constipated, thus the crummy attitude.

He was weaned down to 1/2 liter of oxygen by nasal cannula on Friday night, and by Saturday night they turned it off, and he stayed above 90 on room air even while sleeping.

Because he got the dose of IVIG on Friday, he won't get his subQ dose at home until weekend after next.   Immunology felt like the parainfluenza virus was the one that hit him hard, and was worse because of his lower IgG.   They may increase his home dose this winter if we start seeing hospitalizations from these viruses.   I'd rather not wait until we have any more hospitalizations, but what do I know??

We are back on Pulmicort twice daily and his nasal spray once a day to help keep the respiratory stuff under control.  It seems to be helping, so we will stick with it!

Dr Waldman was very concerned about his heart rate. I explained that we and Dr Kaine know about his bradycardia, and it really is just Ethan's normal. However he did get down as low as 38 and hovered around 44 for a while. But during those episodes didn't appear to be in any distress, and then would recover and jump back up into the 60's.  Dr Waldman spoke with Dr Kaine himself, and he assured her this was his normal.  But, we are following up with Cardiology in December instead of January now.

The Rawleys spent Sunday night making laundry soap so we could do all our laundry, made some homemade chicken and noodles for dinner,  "bathed" the hospital funk off the baldy, and then hunkered down for our favorite Sunday night shows including the season premiere of The Walking Dead.   We love that show. And it sure helps prep us for the zombie apocalypse.

I have another follow up for my knee tomorrow, and Ethan has a discharge follow up in the Pediatric Care Center.  If all goes well, he's going back to school Wednesday, only to be off Thursday and Friday for teacher inservice days!  Oh well, it will be a short week for him!  Thank goodness Brian is off those days too!

Thanks everyone for helping us out this weekend so Brian and I could still go on our weekend 'date'.  We tried a new restaurant on Friday night-The Vinyards and it was fantastic!  As always lunch at The Avalon was wonderful and more so with our new friends the Satters.  And  Thanks Vuljes for joining us at O'Malleys!  We hope you had a good time!  And thank you to everyone who took care of our little guy this visit. He had a fabulous team and awesome nurses. One of his nurses took care of him when was admitted in March the same day I had my surgery and she remembered him. We realized that we have a friend in common, one also with a child with 18q!  Small, small world!  

Tonight we watched Katy Perry's movie, and Ethan really enjoyed it. 
The blonde singer in his life might just have some competition from a dark haired one. 
Or pink haired.
 Or blue haired. 
Whatever-he sure loved her music and we loved seeing him laugh again!  

TGIF, TGIIF and TGWHGF

Thank Goodness it's Friday-I'm assuming most if you know that one

TGIIF-or Thank Goodness it's Irish Fest-our favorite Fest!

And TGWHGF or Thank Goodness we have GREAT Family!!

Ethan had an ok night on Thursday, but by the time I got down there Friday morning, his happy personality had been overtaken by a demon.   He was not happy.  He's ready to go home.

Silver Team is the service he's on now,and Dr Waldman came in with a plan.
Immunology weighed in, and since his IgG upon admission was 762, they feel it was too low for him, and his immune system was compromised, thus the bad effects from these viruses.  He is getting a 6 hour dose of immunoglobulin as we speak- thank goodness for vascular access getting a new IV for him!

Dr Waldman was highly concerned about his heart rate only being in the 50's all day, and asked Cardiology to consult again.  Since whoever the Card on did not know Ethan, and clearly didn't read his history for the last year, they freaked and are having his Digoxin held and a level drawn. I'm guessing that will be normal since his heart rate has been in the 50's for a year now and Dr Kaine has not been worried.  It's Ethan's normal. 

Stinky got a suppository, and lived up to his nickname shortly after.

He's still on oxygen, but only 1/2 liter by nasal cannula. We thought we would try to wean that today, but once he's off for a minute, he drops to 80's.

All in all he's kind of in a holding pattern of crappiness. And I feel so bad for him. He hasn't had to do this hospital stay stuff for so long, he's forgotten how to deal with it. Not that anyone should ever have to learn, but his coping skills are far from desired. I'm sure he annoyed the heck out of everyone else this morning when he screamed at the top of his lungs for 30 minutes while I tried to wrestle him into submission.   It was like wrestling a howler monkey on crack.  He won.
I came home at 1 to get a nap since I worked last night and hadn't been to sleep.
Brian just got home , and he was sleeping soundly and comfortably, finally.

We have had plans and reservations to go to the Weston Irish Fest for months now, so thanks to my family, we are going.  People can think we are terrible parents, and they can then kiss my behind.  We are leaving him in trustworthy, capable hands and we are only a phone call and a 30 minute drive away.  Brian and I need a break together, and we are taking one.    Of course the forecast is saying thunderstorms and possible tornadic activity. Go figure.
My sister Kate is going down to sit with him tonight, my step-mom Teresa is sitting with him tomorrow, my other sister Kim is going down this weekend too, and my mom is coming to stay with Hailey and Parker.  Like I said TGWHGF!
Bring on the hot cider with schnapps and the coddle!! Slainte!

Thanks everyone for your help, thoughts and prayers!

Miserable baby

Ethan was pretty miserable Wednesday, didn't want to be held or messed with. Just wanted to lay in his bed and listen to Taylor Swift on his iPod.   He threw a good number of temper tantrums complete with biting his oxygen mask and grabbing the tubing and pulling it off his face a few times. I think he was really pissed off that he couldn't squeeze all his fingers though the little hole on the side of the mask and shove them in his mouth!

Not that I blame him in the least bit. Let's see, what did we find out yesterday???

He is, wait, was, constipated.  Good ole molasses enema took care of that.

He's still on 5 liters of 30% oxygen by face mask.

His virus panel was positive for three viruses: parainfluenza virus, rhinovirus, and enterovirus.
Sounds like the bubonic plague, right?  Nope-would only be cold-like symptoms in most people.

He got  more Vancomycin and Rocephin, and thus lost his only IV.
So Vascular Access had to be called to get him a new IV
AND he got stuck once more in his hand and finally his cute little bald head for the BNP.

I might be kinda pissed off too.

Good news?  Echo unchanged from July. BNP normal-no failure. Thus the Cardiology service punted him to Silver Team. Which we are ok with!

Bad news?  Ethan is terribly ill from minor viruses, so they are concerned his immunoglobulin dose is not enough or not working.  Easy fix?  Increase dose right?  Unfortunately we can't because his liver function tests are borderline high and increasing that med is contraindicated in that case.  So back to the drawing board with Immunology has got to happen soon.
They are going to put him on an aggressive asthma action plan to try and stay ahead of the respiratory crap this winter.

In the meantime, they have got to try and wean him off oxygen to get him home, so it will clearly be a few days before he's home.

I will update later today when we know more!

Welcoming fall, good and bad!

It's October, and that time of year again.....

Cooler weather
Sweatshirts and flannel jammies
Hot cocoa and apple cider
Weston Irish Fest
Irish car bombs and Seth drinks ( hot apple cider and cinnamon Schnapps-yum!)
Halloween
Hospital stays
And new this October- a newly licensed driver in our house!

Yep, Hailey got her license this week, and has tried to think of any and every excuse to leave the house.  I could really work that to my advantage.
 Need groceries?  Hailey. 
Need gas?  Hailey.
Need prescriptions picked up?  Hailey.
Brothers need a ride somewhere? Hailey.

We'll see how long the newness lasts at that rate!

I'm sure most of you know by now that Ethan was admitted to Children's Mercy on Tuesday evening. He's been on a slow decline for a couple of weeks now, all finally came to a head and here we are 4 Sutherland Room 5.   His sats are crappy-he was 86 on admission. They got him 92 on 5 liters of oxygen by face mask, so they tried switching him to a nasal cannula, but he kept dropping to high 70's with 5 liters.  So they went  back to a face mask, but at 8 liters couldn't keep him above 87.  Respiratory came in and decided to switch him to a different mask called a Venturi mask that delivers 40% oxygen, still on 6 liters, but hanging at 96. This mask helps tell how much oxygen he is truly requiring, as it mixes oxygen with the regular air we breathe. And I may be completely wrong on that explanation-it's how I understood it. I'm an RT, but not that kind!  Since Ethan is a mouth breather, it makes it difficult to tell how much he really is needing.

They drew blood cultures, and then gave him a dose of Rocephin and Vancomycin-antibiotics.  Transport team mentioned they were starting right off with the big guns for him!  Yeah, we can't afford to mess around.  Blood culture results won't start showing up for 12-24 hours, depending on if there is an infection brewing.

Immunology has been consulted tonight. They had no suggestions at this point, but will get involved if needed as labs come back.

X-rays of chest and abdomen were taken. No big pneumonia on the chest. So concerning for high O2 need and fever of 102.  No results on abdomen films yet.

Labs show sed rate elevated-which is an inflammatory marker indicating a process of some type going on. White count NOT elevated, so kind of confusing.

They think he is having febrile seizures, as he seems to have these funky quivers of his legs. Or they think it could  be shivering from being cold, but having a fever. His hands and feet are mottled and cold and blue.  So even with the fever they have piled on the warm blankets.

One of the nurses at CMH North knows Ethan well, and said she knew he was sick when she stuck him, and no one had to hold him down.  Only 3 sticks to get blood and an IV, and only one more for cultures.   At one point they were talking about getting access by way of IO if needed. Glad we didn't have to do that!   IO means intraosseous, where immediate access is gained by injecting directly into the bone marrow. This is obtained by putting the needle right into the leg below the knee cap. I say needle, but it's much more than a regular IV needle. Google it-it's creepy looking. And painful looking.  Again- glad we didn't have to go that route!  They are keeping him on the antibiotic doses, and he's getting his second dose of Rocephin now-which clearly burns going in by the reaction I'm getting. And he will get another dose of Vanc in the am. Hoping the little hand IV he has holds out
for these heavy duty drugs!    

The big question in the back of my mind, and I think the team's mind is the million dollar one. Is his leaking new pulmonary valve the culprit here??  This is the same crap we went through a year ago before finding out he was in heart failure and being admitted to the ICU-after 3 separate admissions just like this.  I have asked for his BNP-Brain Natriuretic Peptide to be drawn, but the residents on tonight are punting that decision to the attendings in the a.m.  Don't think I'm letting that one go. It's the one test last year that gave us a definitive answer he was in failure. On a scale of 1-10 in kids- his was markedly elevated at 3300. I don't want it to get that bad if we can help it.   

I may have to pull out the pitiful cancer card to get my way if needed. 

If not, I'll try throwing myself on the floor kicking and screaming.  

This same post will be on his carepage for those of you who check that too!  

Gotta go, sats dropping again, getting a roomful of concerned nurses.  More later. 

Sweet 16....is that really possible?

My beautiful Hailey Jayne turned 16 on Sunday!

These are the cookies our friend Michelle made her. Some are tie-dye, some are little VW bugs, some are the number 16 and some are her name.  ALL were delicious because they didn't last long around here. !Michelle also made her a yummy white cake. No, it didn't last long either! 
This is my dear friend Sarah- who was there the day Hailey was born-or I should say through the entire two days of labor and eventual c-section

We had a small family party at home, and our social bug 16 year old left us to go to Worlds of Fun Halloween Haunt with her cousin and his friend who came in town from Wichita.   Oh well, I guess I better get used to it!
We are enrolling her in a drivers class next week because having Brian and I teach her is going ok but she needs the class. I have been paying waaaay more attention to my mad driving skills since working with her, and that's about all I can say about them. Mad. And in watching others drive too I've come to the realization more people should have taken a class.  It's actually kinda scary. And scares me to send my baby out there on the road.  And it's not like we live in a small town, there will be highway driving for her almost everywhere she goes. Oh, I meant to say autobahn driving, cause I don't think anyone drives the speed limit anymore. Though I will admit some hypocrisy there, I used to be a terrible speed demon.  I've learned to slow down and appreciate the ride more, in more ways than just driving.

Parker so enjoyed playing with the marching band at Staley Friday night.   This is a pic Teresa sent me. She and my Dad went to hear him!  Said he was in step the whole time. He's being recruited for the high school band for next year, and his band teacher is talking about switching him to a different saxophone.  Can you find P?  Front row. Second from the left!

This is our newest family addition. Frankie.  He is an 8 week old English Bulldog. And yes, we are crazy and no Williams you still can't have George!



I almost forgot to mention I had my knee scope done Tuesday and  Dr Thomas cleaned up the meniscus tear nicely.  He said my arthritis is terrible and since there is no fixing that, he was surprised my other knee hadn't bothered me yet. So I'm hanging out at home with the remote, ice and pain meds for the next 24 hours. I'm supposed to get up and start walking on it tomorrow, but honestly I've been up and down our stairs three times so far. Not too bad, just a little slow.  Off work for one week, my follow up is next Tuesday, and I'm hoping to be able to go back to work that night!

As soon as they give me the green light-I'll be getting my workouts back on!  My goal is to be down 75 lbs by the Policeman's Ball 2013 the RIGHT way. Diet and exercise!  Right James?  Got it!! 


FYI I may be a cranky hot mess for the next 5 months.

 You have been warned. 

I couldn't make this s*** up if I tried!

Yep. Total drama.  All the time around here anymore.
Remember my knee injury/pain from last year?  Well, after about 2 weeks back at work, the pain was back with a vengeance.  It's not too terribly bad just walking on it, but going up or down stairs was not happening.  Since I've done anti-inflammatories, ice, icy hot like burning smelly stuff you rub on those aching body parts, rest (well, at least while I was on chemo anyway) my doctor decided it was time for an MRI.  I apparently have a torn medial meniscus, joint effusion, bony edema and osteoarthritis.

In non-medical speak: crappy knee.
I am, however, hearing that having the tear in the cartilage cleaned up is a miraculous fix, and recovery is pretty quick. Since I just managed to get my PTO hours back in the double digits, it will be nice to not have to use it all with another surgery.   I'm seeing an orthopedic surgeon on Monday the 10th, and hoping I leave there with a surgery date.

I had my "end of treatment" appointment with my fab NP Jennifer and got lots of information. My CA27-29, which is the tumor marker we will check every three months for the first two years was 40. 0-38 is normal with 0 not being any better than 38. My 40 was not surprising to them since it was drawn 4 weeks post chemo. It needs to stay in that general area, and no further testing will be done. Should it jump to say 60 they would probably order a CT or PET Scan or Bone Scan. Until then, and hopefully never, no unnecessary radiation.
 The CA27-29 is not known for being 100% accurate, as no tumor marker really is. However, since my cancer was so highly estrogen receptive, this test is very sensitive to changes in the body.  So in my case if that number does go crazy high, it's more than likely I have a recurrence.
Again-not gonna happen.  Just sharing all my new education.

My vitamin D was back within normal limits, so I just have to take a small daily dose instead of a weekly dose of a bajillion units.

My echo (ultrasound of my heart) showed my ejection fraction is now 55, whereas prior to chemo it was 60.   Again, not surprising, as the Adriamycin is known for its cardiotoxicity.  Not terrible, still within normal limits. Just have to take some Fish Oil Omega-3 and be "heart healthy" and it could improve. Not being able to walk, or do a lunge, or squat, or a push up because of my knee pain is crimping my heart healthy goals.

Also interestingly enough, all the latest trend with eating healthy by way of soy milk and products is not good for me. Since my cancer was highly estrogen receptive, I am actually supposed to avoid soy. 
Drats. And I was craving me a soy burger and soy milkshake. Never. 


Did I mention I almost ripped my pinky toe off byway of the bathroom door?  Lovely, huh?  This is the morning after I did it, two days later the bruise spread all across the base of my piggies and up my mid foot. At least I had just had a pedi. 

Oh, and my hair is growing like crazy.  My eyebrows were non existent, and then BAM one day I have a patchy unibrow. They are hard to pluck because they are baby fine. 

VvMy eyelashes kinda did the same thing. But I must say they seem to be growing back nice and thick, which I'm more than happy with 

And this was just about 3 weeks ago. 

I also walked the Race for the Cure on August 12th with lots of wonderful friends and co-workers! 
 I didn't break any records, but I did walk the whole 5K. 





Everyone else is doing ok around here.  Back in school, arguing about homework and that 20 minutes of reading is actually 20 full minutes.  Not 5 minutes. 

Parker will be playing in the pre-game band performance before Staley's home game next Friday the 14th.  He is playing the saxophone again this year, and he is excited learning the national anthem and the Staley fight song! 

Hailey is playing on a semi-competitive fall volleyball team, and her games start that night too.  She has also already signed for a competitive club team for 2013 because the coach saw her at one of her practices and liked her style.  She is also getting some private lessons to improve on some of her skills and hitting.  In just two hour-long sessions she has learned more about technique and body placement and serving than she did in the previous 3 years of club ball.  She is hitting the ball hard now, and knows how to place it.  Her hitting approach has always been a challenge, and she's doing awesome with that!  She also learned two new serves, and is consistently putting up placed serves!  We are excited for club season this year! 

Oh, and she turns *egads* 16 in 10 days...where did the time go???  And is loving learning to drive.  Let's just say Brian is much better taking her out to practice than I am, I'm kind of a nervous wreck.  But she does really well in her cute little car.  I'm going to be sad when she gets her license and I have to give it back to her.....

Ethan is back in school and doing well so far.  A few crummy days.  His allergies and asthma are really acting up with this weather.  He's had a couple days of fevers, difficulty breathing and purplish black feet.  But we saw Pulmonology a week ago and she didn't seem concerned, so we just keep plugging away.  This is a pic from Ethan's summer school teacher Ms Kristi.  He holds the American flag every morning for the pledge of allegience!  We are so proud of our little guy!!  And I love seeing these pics, because he doesn't do this stuff at home with us, so I was beginning to wonder if they were just making it up at school?!?!?

And this is him sitting unassisted for 4 whole minutes! Go Ethan!!

Please include the Robert Barenklau family in your prayers.  His family was the other recipient of the Guns-N-Hoses bike ride.  He recently learned his cancer has returned and his in his lungs. They are a very nice family, and this just sucks-cause there is no other way to say it.  Keep your chin up Robert-you can fight this and have lots of people supporting you!!