Thursday, August 18, 2011

Komen Invitation!

Since they have sent it out and it is on their website now, I thought I would share...

Final Surgery!

August 16, almost one year to the day (8/15) that she first showed me the lump, Morgan underwent her final surgical procedure! Dr Agarwol performed a bi-lateral expander removal with a right latissimus flap and bi-lateral implant placement.  That is the long way to say reconstructive surgery.  Morgan has been wearing tissue expanders since January.  She hates them and has complained that they hurt and are uncomfortable.  They are oddly shaped and have some rough edges inside of her.  They have been inserting a needle into the port located on them and injecting saline in order to enlarge the space behind her pec muscle.

Due to the radiation on her right side, most of the blood supply to her skin has been killed.  She needed to have new blood supply placed in there so the doctor cut an incision across the right side of her back, just under her braline and cut out about half of her latissimus dorsi muscle.  Leaving its blood supply intact, he pushed it through to the front and placed it in her chest along with a smaller silicone implant.  On the left side, there was just a regular silicone implant placed that was a little larger than the one on the right.

Morgan was so cute as they gave her some meds to relax in the pre operative room.  She likes the way it makes her feel!  She woke up in recovery and they let me come back there.  We spent about an hour in there with some amazing nurses who tended to her every need.  Morgan commented that this surgery was much better than the last...already!  She looked much better than the last time as well.

Soon she was  moved up to the 5th floor where she has been for two nights.  Just as when she was a baby in the hospital, her dad takes the night shift.  She has been watching episode after episode of "Seinfeld" and has had lots of family, dad, Crystal, Boyd, Kylee, Kevin, Aiden, Doug, Riley and friends Kaylee, and Alisha.  We are right now waiting for the go ahead to go home.  The plan is to get there today! 

She won't be able to lift anything for a few weeks and will hopefully be able to go to school as long as she doesn't need a bag or books to carry from class to class.  She is definitely ready to go home! Thanks everyone for all of the well wishes and prayers on our behalf.

Wednesday, August 17, 2011

South Africa

July 28 through August 10th Morgan was in South Africa with her dad, Crystal, and Doug.  They flew to Washington, D.C. and then an 18 hour flight to Johannesburg, South Africa. Most of the time was spent out in blinds hunting with a bow.  Morgan shot three animals...two warthogs and one impala!  She told me that she loved the food they ate which included many different types of wild game and lots of onions.

Morgan enjoyed hearing about the riots of 1976 concerning Apartheid, visiting the home of Nelson Mandela, and learning about other South African history.  It was the middle of winter there and Morgan said it was strange to see the moon in the "wrong" part of the sky and the crescent on the "wrong" side of the moon since they were in a different hemisphere.

Aiden Chad Labrum

On July 21, 2011 Morgan became an aunt to Aiden Chad Labrum. He was born at 5:16 am to Kylee Anne and Kevin C. Labrum. He weighed in at 8' 9" and was 21" long! Everybody is doing great!!!

Li Fraumeni Screening #1

It has been six months since Morgan's PET scan in January so we contacted Huntsman and asked about what to do concerning her screening for Li Fraumeni.  She was scheduled for a visit to dermatology, bloodwork, brain MRI, and a full body MRI.

Dermatology was first.  They did a head to toe exam looking for anything out of the ordinary and didn't find anything.  It really was just a baseline appointment and we won't have to go back for two years unless something shows up that is a concern.  Morgan's bloodwork looked really good.  She has a few things that show up a little low, but supposedly that is left over from the chemotherapy.

The brain MRI had really good news!  There were no solid masses which would indicate tumors.  A couple of areas of white matter were "overintensified" which is indicative of "chemo brain."  It explains why she sometimes feels fuzzy or can't remember something.  The doctors said that on most people this wouldn't even be mentioned, they would just say that your scan was normal.  It may or may not resolve itself.  Also, some small cysts showed up in her sinus that are most likely left over from a sinus infection, but no worries.

The full body MRI covered from the base of her skull to the base of her spine.  Again, it was really good news!  She has a small ovarian cyst that will resolve itself but other than that a CLEAN SCAN!!!  We are so very blessed!

The plan now is to do another scan in six months to see if there are any changes in any of the above mentioned issues.  Morgan has decided to attend Herriman High School with me this year so for now her job is to just live as normal a life as possible for a 16/17 year old girl! 

Meeting with Komen

When we entered the Race for the Cure last May, I had written the Komen SLC Affiliate about Morgan's story.  They were very interested in meeting her once the craziness of the race had died down.  So we finally got together with them in June.  You would have thought we were celebrities the way we were treated.

Morgan told them her story starting from when she first felt the lump through how she has dealt with school to her plans for the future.  They discussed different options of how Morgan could become involved with Komen and their mission.  Morgan wants to help bring awareness to the younger generation and have young girls become familiar with self exams.  Komen has decided to write a letter to all of the Student Body Presidents in all of the high schools in Utah and ask them to participate in some type of pink fundraiser this year.  In the middle of the letter is Morgan's personal story written in her own words:

When you are 15 years old, you are probably worrying about getting your driver's license, going to prom, or getting your first job. Wondering if you'll be alive in the next year isn't exactly the first thing to come into your mind.  In August of 2010, I showed my mom a large lump in my breast that I was concerned about.  She, naturally, became very worried and contacted 5 different doctors about the matter.  After many different appointments we finally had the lump removed on August 25th with the thought of the mass being nothing more than a swollen gland or a fibroid cyst.  Only two days later, my life changed completely. 

"Triple Negative Medullary Breast Cancer" is what they called it.  More doctors and more procedures gave me my schedule for the next year or so.  Six chemotherapy treatments - each three weeks apart, a double mastectomy in January 2011, and radiation M-F for five weeks.  The type of cancer I had was not only one of the rarest types, but it is also one of the most aggressive.  Because of this, I had to have one of the most toxic forms of chemotherapy and also had the most invasive and radical surgical treatments possible due to the high chance of recurrence of my tumor without those treatments. It has been a very long process and has taken every bit of energy I have.  I finished radiation treatments in late April and now only need one more reconstructive surgical procedure this fall. 

Because of this whole ordeal, I basically missed my entire Junior year at Riverton High School, and also lost (along with my hair) many moments I could have shared with my friends and family. Breast Cancer is known as an "old woman's" disease.  I want to send this message with the great people of Susan G. Komen for the Cure to alert and notify the public that it is far from it. This disease can affect anyone; daughters, mothers, sisters, aunts, grandmas, even men.  I hold myself personally responsible to spread breast cancer awareness among young people and educate them about checking themselves.  I want to enforce the act of getting annual mammograms at an even young age than ever before realized.  I hope my story can inspire you to do the same.

Komen also is having a large Survivor Gala in October and have chosen to use a picture of Morgan as their invitation.  It reads...Fight Like a Girl!  It is so awesome!  Morgan's brother, Doug, took the picture of her earlier this year when she didn't have much hair and she looks so great!  Once they have sent out the invites, I will post a copy of it online, but I don't want to steal the moment, so for now it is just for the family to see.  One of the pictures was maniputlated into an art project for a class at BYU by Kylee.  It is absolutely amazing. She cut the word Survivor into the background and then cut some flowering vines coming out of Morgans chest to represent regrowth. Don't be surprised if you see it on a billboard someday.

I am so very proud of Morgan and her decision to represent young survivors.  She is very passionate about informing young women so they don't have to go through what she has had to go through. Check yourself at any age!

Tuesday, August 16, 2011


May 8 - 22 was spent in the Mayan Riviera part of Mexico!  Morgan, Riley, Mom and Boyd flew down for a much needed respite from doctors and hospitals.  After one week, Boyd flew home and Kylee and Kaylee flew down for the second week of fun and relaxation.  The biggest decision we had to make on a daily basis was whether to go to the pool or the beach!

Morgan's doctors warned her to be careful in the sun so she wore a "rash shirt" some of the time and we spent time under the cabanas.  One interesting thing was that when she laid out on her back so that she could get sun on the front, a perfect rectangle showed up on the back of her shoulder!  It was the strangest thing!  The lines were perfectly straight and it was obviously from the radiation.

We swam with dolphins, sharks, and stingrays; played on the beach in the surf and shopped in the local markets.  We painted pottery, ate lots of yummy food, and shopped some more! Our resort was located halfway between Cancun and Playa del Carmen so we spent some time in both towns.  It was so beautiful and we made the best of memories!!

Radiation Treatments Through April 21st

Morgan was a trooper through radiation.  It was at 3:15 every day M - F for 24 sessions.  Each session only lasted about 15 minutes or so, but it took us about 40 minutes to drive there and an hour to an hour and a half to drive home due to rush hour traffic.  We would go into the facility and Morgan would change into a gown.  She would go into a room where the door and walls were over a foot thick.  She laid down on a table with a plastic form for her head and they would line up her "tattoos" with the lasers until she was in the exact position.  She had to hold perfectly still while the machine rotated around her.

The staff at Utah Cancer Specialists were so wonderful.  Morgan went to the Prom during her radiation treatments.  On the day of the dance, they let her come in at 9 in the morning rather than at 3 in the afternoon.  They were all so excited for her and wanted to see her pictures the next week.  It was like being a part of a big family of people who truly cared about Morgan and wanted her to not only get better physically, but to be happy and emotionally healthy as well.

One visit, about halfway through the process, I was waiting and waiting for her to come out.  In the waiting room there were several of the same wonderful people that I came to know quite well and became good friends with.  We would do puzzles and share stories...they were truly a blessing to us.  Anyway, it had been quite a while and I looked at my had been an hour!  Should I be worried?  What was taking so long?  After about another half hour, Morgan came out looking a little worse for wear.  She was holding her neck and didn't look very happy.

Apparently the doctor wasn't pleased with the way things were lining up and wanted to make sure it was perfect.  The tattoo wasn't in the right place on her body (the tech had placed it to the side so it wouldn't show when Morgan wore a v-neck rather than right in the center of her chest). So from that session on, they were going to take x-rays first to make sure the radiation was hitting the exact spot each and every time.  Good news for thoroughness/bad news for comfort.  Now the sessions were always 45 minutes or longer.  I am not complaining, I would do anything for my kids, but it is strange to look back on this time for it felt like it would never end.

On April 21st, after Morgan completed her last radiation treatment, she came out and "rang the bell."  It was awesome!  It is a tradition to ring the bell after completing radiation treatment. We were fortunate enough to witness more than one patient get to ring the bell.  It is an empowering and emotional moment for them and their families.

   FYI:  Once you have radiated a particular area, that area cannot be radiated again.  You can have chemo for a recurrence, but cannot have a second round of radiation in the same exact area.  That was something I did not know.