Braces Off!!!

Morgan got her braces off this morning!  She looks great!  She actually said to Nancy and me...."I wish you guys could lick my teeth and feel how good they feel!"  She feels like a new woman!!!  She ate her first whole apple, right off the core! She hasn't done that for over 2 1/2 years.  She already has the Whitening Strips on her teeth to make them perfect!

Today was a big day.  Johnny and Crystal came down from Rexburg to meet with us up at Huntsman.  We had an appointment to talk to the surgeon, Dr. Neumayer while Morgan met with the Social Worker and Genetic Counselor.  We discussed all of our surgical options, the pros and cons of each.  There are a lot of unique characteristics with Morgan and her cancer, duh! But when you put a 16 year old girl with triple negative breast cancer and a P53 mutation....there are many things to process and work through before making these decisions.  We will keep you up to date as things happen, but as of right now, we don't really have the answers....yet.

Next week we meet with the Radiological Oncologist, then the next week with the Plastic Surgeon.  On December 1st we will all come together again and make some final decisions.  So...just like all of you, WE don't know much about what is going to happen yet either!! :)

With my P53 test being negative, they are automatically testing Johnny for the mutation.  They figure he has about .005% chance of being positive, so once again, Morgan may just be a random fluke.  His family doesn't really need to worry about having the gene or testing for it.  His family history doesn't quite fit the usual mold.  As for my family, we don't really need to worry about the P53 gene, (YAY!) but there will be further genetic testing in the future.  My cousins from Florida will start because of their medical family history, and then depending on the outcome, the testing will bounce back to my family.  We will keep you updated as information becomes available.  But the one thing that is stressed the most is for ALL women to get their mammograms each and every year!  If you have any relatives who have passed away or survived from breast cancer, you may want to even start before the age of 40. 

I had my first mammogram yesterday...I had been warned that it would be uncomfortable, but it really was a tight squeeze! (but as I watch Morgan's journey, I don't really mind a little pain!)  They called today and left a message for me to call for a follow up....great news!!!!  Oh well, nothing surprises me now!

New hair....old braces!!! She'll have better pictures tomorrow!  Love ya!

Chemo #4....2/3rds of the way!!!

Kylee (Morgan's big sis), Nancy (my big sis), and I went with Morgan for this round of chemo.  It went really fast since she DID NOT have a reaction!!! Yay!! I am sure it is because we had her doped up on so much steroids and benadryl.  I am sure her body is getting used to it as well.  But, I guess that isn't the whole truth.....she kind of became anxious and antsy after the benadryl....she couldn't hold still and had to move around a lot.  It was fun to watch, but she sure looked good with her new hair on.

Found out the bag of Cytoxin runs around $120, but the bag of Taxotere, (the one that almost killed her) costs ......$15,658!!!!!!! Her bill at Utah Cancer Specialists is up to just over $78,000!!! Thankfully she is double insured!

Her G'ma Watson made her an awesome cuddly blanket to keep her warm during her treatments.  All of the other patients, and even the nurse, is jealous and want to take it home.  Morgan is doing a great job pulling through all of this.  She takes so many different medications, it confuses me all the time.  Of course she doesn't want to most of the time which reminds me of when she was little and would spit the liquid syrup back out at me right in the face!

Today we went back into the office to get her Neulasta shot.  She is such a pro I didn't even go back in the room with her this time...  Nancy and I stayed in the waiting room talking to a lady who had just come in for her first appointment.  I must say that I felt really strange being the more "experienced" one who was consoling the new patient. As I told her that she would be okay and could make it through it...it gave me a strange feeling of calm and peace, because I knew that I wasn't lying and trying to make her feel better.  Yay for us!  Just the few things Morgan was able to say to her could make a huge impact on her and give her a little relief at this crazy time. She has the ability to influence and change the world. It is a good feeling!!

P.S. I got my P53 test results back today....I am negative!  It is both good and bad news to me.  I am relieved to not have to worry about Kylee, Riley, and my siblings and their families.  But, I think it would have helped Morgan to maybe have someone to fight with.

Morgan's Back!!!!

If you see Morgan with a full head of gorgeous hair...you'll never remember what she looked like bald.  We found a wig on Tuesday that looks exactly like her real hair.  She came out like a new girl!  I REALLY wanted to post a picture to go with this but.....since she gets her braces off on Thursday she wants to wait so you can see the NEW & IMPROVED version of Morgan.....but I love her just the way she is!  We're wondering if maybe we should get a clip-in white section to replace her "Angel Kiss"....maybe next week!

Morgan's in St. George

Morgan needed a break and some better weather than we are having here in Salt Lake.  She left on Thursday to go down to St. George and is staying with her G'ma Meikle for the weekend.  Of course she gets to spend time with Cody also.  So, you could pretty much say she is doing great right now!  It makes me feel really good to know she is happy, smiling, and having a great time.  Those days are too few and far between.

I want to personally thank a few of you who have generously donated money to our medical expenses.  You know who you are....and I just want you to know how extremely grateful we are!!!  Every little thing helps and overwhelms me....the dinners, the gifts, the  notes & cards, the pink ribbons down the street and on our door, the FB page, the visits, phone calls, CHOCOLATES and genuine concern....I would fail miserably at Thank You cards for everyone.  But, please know that not one small thing has gone unnoticed.  We do love and appreciate you, your time, your money, your generosity, and mostly your love and caring.

A few important people at Herriman High and Riverton High are trying to set up a "Fun Run" in November for all of you who want to run, walk, skip, or dance your way through.  All proceeds will go to Morgan's Donation Account which is set up at Wells Fargo.  We will get you more information as it comes available.

The love and support of all of you around us is amazing and very much appreciated!!!

P.S. Morgan got stopped in the hall the other day for wearing a hat, which is against dress code....we wondered how long it would take....simple mistake!  :)
FYI: my test results are still a week or two away...

What's New...

Morgan is doing great after her chemo last week!  She is even doing homework!  The quarter is about to end and she has many things to get made up before then...we are hoping her teachers will work with her on this!  I think I still have an "in" with those at RHS....I hope!

I went up to Huntsman last Thursday and had my blood drawn to be tested for the same P53 gene mutation as Morgan.  I have been talking to relatives and drawing charts to show where different types of cancer has shown up in our family tree.  It has been very interesting and I have learned many things I didn't know.  It is looking more and more probable all the time.  We have to wait about four weeks for the test result so I will keep you posted as to what we find out.

October has been a very crazy month full of lots of pink ribbon merchandise and hearing the word "cancer" every time we turn on the TV whether it is in a sitcom, a drama, or the news.  We appreciate all of your support and for those of you who are wearing pink and those "contraband" I Love Boobies bracelets!  My mom saw a story on one of the local news channels the other day about a 25 year-old woman with breast cancer.  The reason they were interviewing her is because she is so young to have breast cancer!!! :)

My sister Jamie wrote an email to Ellen DeGeneres the other day to tell her about Morgan's story...that is one of the first things Morgan wanted to have happen when she found out she had breast cancer....go on the Ellen Show!  Cross your fingers!!!!! Maybe if she heard about it from many of you out there, she couldn't ignore it!!!

LIVESTRONG CHALLENGE!!!

  We are so blessed to have the connections and support system that we do!  THANK YOU, THANK YOU, THANK YOU....I could NEVER ride 40 or 70 miles...but I would love to see "TEAM MORGAN." This is amazing stuff and I feel very honored to see this happen!  Love to Alisa and Ryan...and whoever else they can convert to our cause!!!!!

 

Alisa Shirley October 18 at 12:40pm Report

Hey Jana,

So, my brother Ryan and I are heading to Austin (Oct. 24th) to ride our bikes in the LIVESTRONG Challenge. I'm biking 40 miles, Ryan is biking 70 miles.

This has thrown together very last minute, so I don't have a lot of details. We want to ride in honor of Morgan. We will both be wearing a shirt that says, "TEAM MORGAN." All donations for this event will go to the LIVESTRONG Foundation (I will be sending out a mass email asking to support our team). While we are in Austin, I plan on seeing if there is any sort of support that we can get for your family. It's sad to say, but I have never researched stuff like this before. Getting close to the action might help me understand.

Anyway, let me know if you have any suggestions.

Thanks,
Alisa

The Day-After Shot...

We made a quick run into the office today for her Neulasta Shot. Just to show you how it works... Normal White Blood Cell (WBC) is 4.2 - 10.5 and the day Morgan met Dr. Beck (Oncologist) for the first time hers was 6.6. A week after her Chemo#1 it was 26.2.  Then right before Chemo #2 it was 8.3, and one week later was 52.7.  Then yesterday just before Chemo #3 it had dropped down to 7.3.

Although the entire purpose is to get her bone marrow to build white blood cells, which it is obviously doing, you can see why her body hurts so much.  Her spine, sternum, arms and legs really ache and she says that is the worst part of the chemo for her.  Her bone marrow is working overtime to build those white blood cells so she won't catch anything and everything, but also so that her numbers are high enough on the day of chemo so she can actually have it.  If her numbers are too low, they will postpone the treatments until they come up enough on their own.

I asked about Morgan not having the shot on the day after and then getting it later if needed.  Apparently the insurance company will only pay for the $6,000 shot if you do it directly after...not any later as an afterthought.  That gave me my answer!