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!

Chemo is Half-way Over!!!

Tuesday afternoon, Morgan's G'ma Irene and I took her to her 3rd round of chemotherapy.  In preparation for the hypersensitivity reaction she has experienced before, we more than doubled the amount of dexamethazone (steroids) during the 12 hours prior to her appointment (10 pills rather than 4).  The steroid is to suppress her immune system and keep it from fighting the poison. Apparently it worked fairly well.  She did have a minor reaction but it took longer to begin from the start of the Taxotere...7 min. vs the 3 and 5 minutes the last two times.  Also, I happened to pull a "Shirley MacClaine" and "demanded" that the oxygen be on her face before the medicine goes in.  It worked! Morgan even said that if the oxygen hadn't been on, she wouldn't have been able to breathe.  Score 1 for mom!  It took only 12 minutes for her to flush it clear through and start the medicine again, so it really was a much more mild reaction than the previous two times.  She started the day much more tired than usual and the first bag of Benadryl made her even more tired and a little dizzy.  There is a definite difference in the girl she is today vs the girl she was after the first chemo.  She is much more tired and feels like part of her is missing.  She is now officially 1/2 way through the chemotherapy treatments!!!  YAY!!!!!

Surgery Scheduled!!!

Disclaimer:  Any of this information can change at any time unless everything goes as perfectly planned...
Thursday at noon Morgan and I met with Dr. Neumayer up at Huntsman Cancer Center.  We talked with her and several others about Morgan's prognosis and continuing treatment.  The doctor walked right in and held her hand out to shake Morgan's and said, "Now you are an interesting young lady!"  (Something that I have always known!)

After about three hours of discussing several options, we came up with a tentative plan of treatment and a date for Morgan's first surgery.  Things may change as we go, but as for today...this is the plan.  Morgan will continue with her next four rounds of chemotherapy as scheduled.  The next round is this coming Tuesday (Oct 19th) followed by November 9th, 30th and December 21st.  Please remember to wear PINK!!!!

She will then undergo another PET CT Scan to see how her two internal mammary lymph nodes are doing.  If they still "light up" with a standardized uptake value of more than 2.5, then the doctors will have to "go after them" in surgery. :) Great medical lingo don't ya think?  On Friday, January 14th (the last day of first semester), just over three weeks after her last round of chemo, Morgan will undergo a Bi-lateral Total Skin Sparing Mastectomy.  They will place temporary tissue expanders in place, she will be out of school for a couple of weeks, and then after about six to eight weeks, will begin her radiation treatments.

Radiation will last for six weeks. She will go in every day Monday through Friday and each session takes about 10 - 15 minutes.  Three months after the completion of radiation, Morgan will go in for another surgery to remove the expanders and place the implants.  From everything we have been told by the medical professionals, as well as other patients, she will continue to look just like herself throughout the entire process and no one would know (unless you already know)!  Of course there are a lot more details than all of this, but most of it is technical and above our pay grade. :)

We have several appointments already scheduled with the surgeon, plastic surgeon, genetic counselor, oncologist, and labs.  This week they will be testing me for the same mutations as Morgan and that could open up a whole new schedule of doctors and procedures.

We are currently in St. George enjoying the warmth, time with G'ma Meikle, and Morgan is with Cody...haven't hardly seen her!  We used the lint roller on her head and a lot of prickly whisker-type hairs came out.  She says it feels better, but you can definitely see the difference it made. 

All of this makes the journey just that much more real.  It will be a good year or so before things begin to settle down and we really appreciate all of you and your support.  Please keep us in your prayers and on your mind.  If anyone has any great ideas for a non-cancer day/fundraiser-type activity...please let me know.  This is the month for Breast Cancer!!!!  I keep telling Morgan that she needs to become the "poster child" for the American Cancer Society's campaign for adolescent girls....someone needs to be braver than I am and turn in her picture!!!!

Genetic Test Results

Sorry this update has taken so long to get back to you.  I feel like each day just flies by and I wonder how much I even accomplished...it always feels like I must have done everything...but actually it ends up being just the minimum requirements.....I can only apologize that there are not more hours in every day!  The Genetic Counselor, Amanda, called Morgan and me on Monday night and we spoke for about an hour.  She informed us first of all that Morgan did test positive for the P53 gene.  This means she has a condition called Li-Fraumeni Syndrome.  The following is a "blurb" that Amanda wrote to help explain how all of this works and what it means for Morgan:

At Huntsman, we see lots of extraordinary people, and Morgan is no exception. When I see patients, I see everything that is right about them. In Morgan, I saw a bright, motivated young woman, and my job was to help her find the answer she was looking for: why she got cancer. When Morgan came to our genetics clinic due to her very early onset breast cancer, it prompted us to think about what may have caused her to have cancer in the first place. When we see individuals with cancer at such a young age, one of the first things we think about is a possible underlying genetic cause.

Our genes are the instructions that tell our body how to function. We have genes that determine our eye color and hair color, and many genes are very important in keeping us healthy. In fact, the main job of many of our genes is to keep us from getting cancer. When a person has an alteration in one of these important cancer prevention genes, he or she is at increased risk to get cancer.

Someone might ask, “How do genetic alterations come about?” Sometimes genetic alterations are passed down through many generations, but other times genetic alterations just happen by chance when a sperm and egg come together. There is no way to prevent, cause, or predict whether these slight modifications will occur. In fact, every person probably has about 10 genetic alterations that put them at risk for some health issue. We just happen to know where one of Morgan’s alterations is, and it is in a gene called TP53. 

TP53 is what we call a tumor suppressor gene. This gene is sometimes called The Gatekeeper of the Genome because it is so important in protecting us against cancer. Every person has two copies of this gene, one from Mom and one from Dad. Together the two copies are constantly working to protect our cells against cancer. Morgan was born with one copy of her TP53 gene in every cell of her body not working the way that it should. Basically, one copy is on permanent vacation and left the other copy to do all the work in warding off cancer. If the working copy quits in any cell, a cancer develops. Since we have these genes in every cell of our bodies, individuals with this genetic change are at risk for cancers virtually anywhere in the body. When we heard that Morgan has breast cancer now and had an adrenal tumor as a baby, we did a genetic test to look for a genetic alteration that would stop the gene from working the way that it should. When we did the test, we found the genetic change that caused Morgan to have the adrenal tumor and breast cancer. Interestingly, the only thing the gene affects is cancer risk; Morgan won’t have any other physical changes or health problems as a result of this genetic change. Individuals who have a TP53 alteration, like Morgan, have a condition called Li-Fraumeni syndrome.

Li-Fraumeni syndrome is just a fancy term for people who have a genetic change in the gene that Morgan does. Dr. Li and Dr. Fraumeni are physicians who first recognized that certain people have highly increased risks for multiple cancers, and the word “syndrome” just means a collection of features; in this case it is a collection of cancers. For Morgan, having Li-Fraumeni syndrome means that we know what caused her cancers, and it also means that we have to be particularly diligent in looking for possible other cancers throughout her lifetime. The risk of a third cancer is small (probably less than 5%), but even with a small risk we want to make sure we are taking care of Morgan in the best way we know how. If you Google Li-Fraumeni syndrome, try not to be worried; most of the statistics and information on the Web are somewhat outdated. At Huntsman, we have a set screening regimen that we offer to patients and have had wonderful success so far. Morgan will just have an extra day or two of doctor’s appointments each year. Otherwise once the breast cancer treatment is over, life should resume as it has always been!

There are lots of other kids in the country and in the world with Li-Fraumeni syndrome. While Li-Fraumeni is rare and you probably don’t know anyone else who has it, about 1 in every 20,000 people is thought to have the genetic change in the very same gene that Morgan does. Believe it or not, Morgan isn’t the youngest girl to have breast cancer, but she is among the few who have the strength, bravery, and maturity to tackle an “adult disease” at a young age. My job was to help Morgan find the cause of her cancer, and now that we have that information, our job at Huntsman is to take care of Morgan and protect her future, even if her genes are lying down on the job. Morgan is constantly in our thoughts and we are privileged to be a continuing resource for her as she completes this journey and beyond!

Thanks Amanda!  I (Jana) will be going up to Huntsmans myself next week to have blood drawn for both the P53 gene and the BRCA mutations (for which Morgan is negative but several of my own cousins have been tested positive).

Lance Armstrong!!!

This is a facebook message that I received the other day from my niece Mandy Shirley Brown's cousin Alisa Shirley.  I taught her up at Madison High School, was her cheerleader adviser, and pretty much have known her since she was born.  Here is what she had to say:

Alisa Shirley October 13 at 10:35am Report

Hey Jana!

I want you to know that I have been thinking about you and your family. I am so sad for Morgan, but sounds like she is a pretty tough chica!!

Not sure if Mandy told you, but I am friends with Lance Armstrong. I told him about Morgan and he responded with this...

Lance Armstrong to me
show details 10:28 AM (1 minute ago)

"Wow, a 16yr old? I have never heard of someone so young w/ BC. Wish her my best please."

Love you guys!!!

Alisa

Updates coming

Hey everyone, sorry it has been a while! Just so you know, we have a LOT of new info on Morgan and her treatment, as well as her future plans. I'm going to let our mom post it though, because she has more of the facts. She is in St. George with Morgan this weekend so she will get on here as soon as she can. Hold tight! Thanks again for all you do. We love you and appreciate you!

Nadir

Nadir is the specific time in between treatments when Morgan's blood counts are as low as they are going to get.  We went to see Dr. Beck and they took some blood to get those counts.  Due to the Neulasta shot she got last week, her white blood cell count was at 52.7...just in case you are wondering...normal is around 10.  Dr. Beck said that this would explain why her back and other bones hurt so much.  The bone marrow is working overtime to try to make up the blood cells which are being killed by the chemotherapy.  As most all of you know, your white blood cells are what fight infections and build immunities in your body.  As long as her numbers stay up...she can still go to school!

Dr. Beck presented a couple of different chemotherapy options for Morgan so that she could avoid the hypersensitivity reaction she has been experiencing each time.  Morgan was all for that!  Apparently the reaction is to the solvent that the Taxane poison is mixed in.  One option is to change to Taxoll which is in a different solvent.  This would need to be administered once a week in smaller doses which also means that instead of an IV, she would have to have a central line, or Port, placed in her chest.  The drug which would go along with this instead of Cytoxin would be Carboplatinum.....just sounds expensive, huh?

The second option would be Adriomyacin every two weeks with the Cytoxin.  One good thing about this is that it would be every two weeks so she could be completely finished in 8 weeks!  Downside is that it would also require a port and it runs a risk of creating heart damage.  After weighing the options, MORGAN DECIDED to stay with the regimen she is already on.  She figures that a short reaction each time outweighs the need for a port and the short recovery time inbetween treatments.  That really good 3rd week before chemo would be entirely eliminated with these other two options.

So what we are going to do is follow the original plan, increase the dosage of steroids the day and night before the chemo treatment and just be completely prepared for the reaction so it will last the least amount of time.  Morgan has matured so much and is thinking more like an adult.  We discuss all of the pros and cons of each option, but in the end SHE makes the decision.  Of course, Dr. Beck nor I will allow her to make a "bad" decision.

The stress and responsibility is starting to wear on her.  She is starting to realize how "real" all of this is and how it isn't just going to go away because she wants it to.  Like Dr. Beck said, she really is alone in all of this.  Not that there aren't many people who love and support her, but there isn't anyone else out there like her for her to talk to.  We got the name and number of a great counselor who will meet with her, with me, and with the entire family if needed.  There are so many great resources out there, it is just very time consuming to search all of these out on the internet....so I really appreciate it when you send me a link to a website that you think I should check out.

Life outside of Morgan's cancer has to continue on as normal.  We just aren't sure how to fit into that world.  I told a friend the other day that I feel like I am on a roller coaster on a different planet....and it is time to go home and be "normal" again!  We have our "ups" and unfortunately our "downs" but just know that we love and appreciate each and every one of you.  Our lives are being touched and influenced for the better each and every day...even the smallest and simplest things that may not seem like a very big deal for you.

We are being well-fed by the ward and by family.  I just received an amazing gift in the mail today from an old friend from Rexburg (you know who you are) which really means a lot to me...Thank You!  We are truly blessed and see small miracles each day.  Please keep in touch even if you don't always receive an immediate answer.  Keep us in your prayers, send pictures of any of your "pink" events, and drop by to say hi once in a while.  Love you so very much!

Morgan is Amazing!!!

Just wanted you all to know that no matter how bad she feels, Morgan is still fighting!  She told me last night how much she hates being sick...and today (Friday) should be her "bad day" if she stays on schedule.  I am so very proud of her!  Words cannot express how much I love this baby girl of mine!  She IS a miracle!!! <3 Mom