Wednesday, December 29, 2010

Snowboarding at Snowbird

So yesterday Morgan went with her friend snowboarding at Snowbird.  She was really excited to go as it has been a really long time since she has been boarding and it was to be a great day out of the house.  Of course, I was worried that she would overdo it and not feel well.  I made sure she took along her little box of medication just in case she got nauseous or began to really hurt.

She left at 7 am and I didn't hear much all day.  The house phone rang around noon and I could hear her boarding and talking....she bum-called me!  I started yelling her name into the phone until she yelled back, "what?" It was so funny cuz apparently she looked up the mountain to see who was yelling at her.  We talked while she was standing on top of the mountain and she was doing great and having fun.

I spoke to her again around 6:30 to see when she would be home.  She was back at her friend's house eating dinner and sounded great...but said there was a story she needed to tell me about what happened right after I had talked to her on the mountain....well, apparently her bindings broke.  She struggled for a while, walked some, and finally sat down as she could do no more.  There is much more to the story, but you'll have to talk to her for the details!

A first-aid guy skied by and asked if they needed help.  She explained that she had just had chemo during the last week and was exhausted.  He called another guy to come help, they strapped her in the toboggan, and pulled her down the hill....they called it a "courtesy ride."  She said it was awesome!  The ride was smooth and they were skiing so fast that at one turn she thought she was going to flip out of the sled.  She tried to sit up as a reflex but couldn't move since she was all strapped in tight.  The took her all the way down into the "plaza" where the shops are and everyone was staring at her.  She climbed out of the sled and then had to wait for her friends to make it down the mountain to her.  Now, that would have been a strange sight!

WOW!!! I guess what I don't know really doesn't hurt me!  Good thing I didn't find out what was going on until after it was all over and she was home safe and sound.

Morgan had an amazing day and said the weather was perfect.  However, she was so sore when she got home that she couldn't move.  When I came home from the store, I found her in her bedroom flat on the floor.  I was climbing over her trying to make her bed while she told me about her day.  I wanted her to move over so I wouldn't accidentally stand on her head, but she couldn't even do that.  She said it was worth it.  I know that today she will be paying for it....but she hasn't got out of bed yet!  I'll keep ya posted!  Love that girl!!!  NEVER a dull moment!

Walt Disney World!!!

Morgan was able to go to Florida with her dad & Crystal and Crystal's family during December.  She left on the 9th to go to Idaho and they flew out on the 10th to Denver and then Orlando.  She had a blast going to DisneyWorld, Universal Studios, Animal Kingdom, and Sea World.  I was worried about her being able to get around and not wear herself out...not to worry!  They rented a wheelchair so she could be pushed around the parks.

I figured that the wheelchair would give her the opportunity to go to the front of the lines.  When we had gone to Six Flags with Riley as a baby, they had let us in a different line which was used for those who needed a wheelchair.  We would go to the very front and do a "baby swap."  So, I texted Morgan and asked her if she was able to skip the lines and she said...."a girl's gotta do..."  :)

Later I found out that on the first day she was wearing her wig and looked like a young healthy girl so people didn't really let them go ahead as much.  Morgan said that anyone could rent a wheelchair and so the next day she wore just her hat.  Also, she said that she was tired of holding her wig on during the rides. :)  People treated her a little differently...which is interesting just on its own.  Then the next day she went with nothing on her head - completely bald - and all of a sudden people were getting out of her way, being super kind, and little kids were staring at her. :)  She said that all of the Disney Characters were coming up and giving her hugs and high fives.  (she ended up giving the little kids funny faces!)

She had an awesome trip and came home to me on the 19th exhausted and sore.  Just in time to sleep for a day before getting her last chemo treatment!  She and I have been practically hooked at the hip since the end of August.  I cried as she drove away to go on her trip.  I can't believe how much I missed her during her time away.  I am so excited to have her home again and get rested up for her major surgery next month.  She is so funny and full of so much crazy information that comes out at the most random moments!  Morgan is certainly one of the supreme joys in my life!!

Sunday, December 26, 2010

No More Chemo!!!

Tuesday, December 21st, was Morgan's LAST chemo treatment!!! She did really well without any reactions.  When it was over, we were walking out of the treatment room and her nurse met her with a bottle of sparkling apple cider....just like champagne to celebrate.  Then as we walked down the hall she was hugged by another nurse and the doctor each giving her congratulatory hugs!  It was kinda fun!!

Morgan was hungry so we stopped at In 'n Out and then came home.  She seemed to feel pretty well and had a good night.  Wednesday she wanted to go to school for the SilverRush Assembly, then to get her last shot of Neulasta after that.  By bedtime she was starting to feel achy and tired.  Thursday morning Morgan woke up... and said that it was the first day she wished that she hadn't woken up!  She was so sore and could barely move.  She laid around all day and felt worse than she had probably the whole time!  I think she just hadn't had the time to rest up for this last treatment, plus she had kind of pushed it the day before.

Friday was a bad day as well....everything hurt.  Everytime I even touched her she screamed, "Ouch!" She laid on the couch and observed while we built gingerbread houses and played games.  I felt so bad, I had nothing that I could do for her.  We went to a family Christmas party and she did a pretty good job of participating, but was still very sore...it hurt each time someone hugged her or bumped into her.

Saturday morning came early....6 a m! We had to be finished with presents by 9 am to get Kylee and Kevin to the airport.  It was a much better day as far as pain and nausea go.  We went to the movie as a family and she watched some movies at home.  I can tell she is feeling better just by listening to her talk and even joke around.  We are so excited to think that her last "bad chemo day" is over!!!

Right now the next appointment on our list is Jan 11th when she will have a PET Scan to see how well the chemo worked on killing the cancer and keeping it from spreading.  We will meet the next day with her oncologist to get the results and then two days later on the 14th she will have her surgery up at Huntsman!!

Happy Holidays and best wishes to all of you!!!  Thanks for the meals, the prayers, support and love!! We can feel your support and couldn't do it without you!!!

Thursday, December 9, 2010

Update

OK so I know I need to be better at keeping Morgan's progress up-to-date...sorry for the delay.  This will be a long and detailed entry since so much has been going on....sorry again!

Morgan underwent her 5th round of chemo on November 30th.  She did really well with no obvious reaction during the treatment.  I never thought it would ever feel "routine" but it is just something we do.  We sit and talk or she reads or watches a movie.  We have made some good friends at the center and almost look forward to seeing them each time. 

The day after, Morgan had her Neulasta shot and then we headed up to Huntsman for a family meeting with her treatment team to make some final decisions on her upcoming surgery, radiation, and reconstruction.  It has seemed like we were riding  a rollercoaster just to get to this point.  The doctors know there are different options, but they haven't been sure about how to apply them to such a young patient.  They have told us that Morgan is the ONLY 16 year old patient with triple negative breast cancer who also has been diagnosed with Li Fraumeni Syndrome so there aren't any previous cases to refer to.  We are basically breaking new ground with her treatment and we want to do what is best.

One large issue is radiation.  In order to kill the current cancer (which is the most life-threatening for Morgan) it is mandatory for her to undergo radiation due to the internal mammary lymph nodes under her breast bone which tested positive on her PET scan.  The hope is that the chemo has completely killed the cancer, but there is no way to know that until the 2nd PET scan scheduled for January 12th or 13th.  The nodes cannot be removed, so the only way to truly "kill" them is to use radiation.  The problem is that radiation is extremely dangerous for her Li-Fraumeni (p53 gene mutation) as radiation causes cancer.  Also, the radiation will actually burn her skin and make the reconstruction problematic.  Of course, we want to do everything we can to save her life and keep her healthy...so radiation will happen about six to eight weeks after her surgery on January 14th.

Another large issue is which type of surgery Morgan will have in January.  Our choices were between a lumpectomy or mastectomy.  Again, the one that is best for her current cancer, isn't necessarily what is best for her p53 condition.  This is getting confusing about now....trust me, I know!  We have all agreed that going through with the double mastectomy is the best option for saving her life....so that is what is planned....final answer!  They will insert tissue expanders behind the pec muscle and expand them over a period of 6-8 weeks followed by radiation. 

If we had gone with the lumpectomy, she would have six full weeks of radiation M-F = 30 treatments.  But since she is having the other surgery, she should only need five weeks M-F = 25 treatments....LESS radiation (which is a good thing).  When it is over, she will need to heal for about two to three months...then she will have reconstructive surgery.  We decided to try implants prior to going with the Latissimus Dorsi reconstruction.  We can always use that as a second option if the implants don't work right.  Much of this will depend on how well her skin and tissue heals from the radiation.  If she doesn't heal as well, the plan may change.

Morgan's dad was tested for her p53 and his blood test just came back negative.  Since mine was also negative, it is looking more and more like her mutation was just a natural fluke...one that can now be passed on.  Just so that we can know for sure, her genetic counselor would like both of her siblings to be tested as well.  There is a VERY small chance that the mutation came from my eggs, and it would be very neglectful to not find out and get them screened in order to prevent any of this from happening to one of them.  If, heaven forbid, it does show up, then the next step would be to test my siblings and go from there.  So many things that we have never even heard of are included in our genetic makeup.  It would be so fascinating to study it if it weren't a part of my own family.

I know this is a lot of information with too many details for some, but Morgan and I both feel that it is important for others to learn from her experience.  I had no idea this was all so complicated and if we can help even just one other person who may go through this or loves someone going through it, then we will feel like something worthwhile came from this crazy nightmare.

Morgan wanted to go to St. George after chemo so we went to visit G'ma Meikle for a few days.  Morgan brought along her friend Gabby and we had a great time.  Morgan slept a lot and rested up for the next week of school.  I feel like so much of the sickness and bad days are spent within the walls of our home, that it is a wonderful break just to get some different scenery even if we just sit around and do nothing.

We went to her 6-month check-up with her pediatrician.  She hasn't seen him since all of this started and he was impressed with how well she looks.  Like every other doctor we've seen or talked to, he was amazed that she actually has breast cancer at 16.  She is his first (and probably last) patient with it.  She is definitely one for the record books.  A few people have written in to Ellen DeGeneres to get on her show.  That was Morgan's first request...so if any of you want to add to the mail....it may help!

Many have asked how she is doing in school.  The days she is there, she gets her work done and turned in.  Problem is, her attendance isn't so great.  The school has been great to work with us and Morgan actually made the 1st quarter honor roll!  She has some incompletes to make up from that quarter, but so far she is still on line for graduation with only one make-up packet!  That is amazing considering she is in physics and pre-calculus.  What a smart girl!

Morgan made it to school a few days this week but left today to go with her dad and family on a Christmas vacation to DisneyWorld.  I think she needs the break to get her mind somewhere else, but it is really weird to be apart.  We have practically been attached at the hip since August so I am sure it will be a challenge to get through the week....I miss her so much already!  Of course I worry because I won't be reminding her to take her meds or watching the cues she gives about how she is feeling, but she will be with family who can take care of her...I am just being a mom.  I just hope she doesn't overdo it and pay for it the next day.

Morgan doesn't want anyone to worry about her, especially family and close friends, and she always puts on a good face.  I am so proud of how strong and brave she is.  I have learned so much from watching her and listening to her.  She has a great attitude and I am so blessed to be her mom.

The Fun Run has been postponed until January due to logistical issues....we will let you know when and where as soon as we know!

Her next (and last!) chemo is scheduled for December 21st!  Don't forget to wear your pink!!!!

Monday, November 29, 2010

Plastic Surgeon

We saw the Plastic Surgeon at Huntsman last Tuesday.  Sorry it has taken me so long to write about it.  There are lots of details for those who are interested.  Let's just say that it wasn't what we were expecting when we went up there!

We met with Dr. Agarwol's assistant first.  She took one look at Morgan and asked her if she was going to have chemo....it was great, she couldn't even tell Morgan was 2/3rds through and wearing a wig!!  Once she found out that Morgan was having radiation after her January surgery, she said "well, radiation complicates reconstruction." (What is that supposed to mean?....not a good start to the meeting!!)

The (latest) plan is that Morgan will have a new PET Scan after chemo to see if everything responded the way it was supposed to.  Followed by a lumpectomy on January 14th.  That will take out the margins around the original tumor and include a sentinal node biopsy.  This is when they inject a type of radioactive dye in the breast to see where the fluids drain out first...under the armpit or into the nodes under the breast bone.  Usually 95% of the fluid goes out the armpit (which is why it is strange her inner nodes lit up and her armpit nodes did not.)  They may take out a node or two in the armpit while she is in there.  This will be an in and out procedure and two weeks later she can begin the six weeks of radiation.  She shouldn't have too many (if any) side affects of the radiation and her spring months will be as normal for her as possible.  Then in May, she will undergo a bi-lateral mastectomy followed by reconstruction a couple months later.  We need to make a decision on what kind of reconstruction to do, so that is why we had this meeting.

I thought it would be as simple as tissue expanders followed by implants...but that isn't one of our options.  They want to use Morgan's own tissue which would have its own blood supply...as they said "radiation plus implant is ALWAYS problematic."

1st option: Take fat and skin out of Morgan's stomach to fill in her radiated breast.  This would include needing to remove a blood vessel and reattach it to a blood vessel in her chest.  The Dr. checked and she doesn't have enough "fat" for a tummy tuck so this option is not available.

2nd option:  Same as above, except use fat and skin from her upper rear end.  This is an 8 hour surgery and would have to be done twice a couple months apart. 

3rd option:  Use the Latissimus muscle from Morgan's back.  It would stay attached to its own blood supply which would make it less complicated.  They would just wrap it around the front from the back.  (weird, I know....I hadn't heard of this before either!) It is called Latissimus Dorsi Flap if you want to learn more.

As for now, all of us (the doctors, parents, etc.) are going to meet at Huntsman on Wednesday for a final meeting before the surgery...to work out all the details.  There is SO much to this entire process!!! When you add up all the doctors, all the visits, all of the tests, every procedure, and all of the insurance and financal issues......it's like a full time job!

Many of you ask how Morgan is doing...she is handling all of this as well as can be expected.  She has felt weak and very tired....like it is all catching up with her.  I am amazed at her every day, sometimes I forget she is sick at all.  Only two more chemo treatments, tomorrow and the tuesday before Christmas.  Dr. Beck told us it would be like pregnancy and the last part would seem a lot slower than the beginning!

Don't forget to wear your pink tomorrow!!!  Thanks for all of your support...

P.S. I hear the fun run will be on December 11th now....more details are coming!!!

Jazz vs Kings

Our neighbor Eric gave Morgan and me two tickets to the Jazz vs. Sacramento Kings game last Monday.  We had so much fun!  We laughed and talked and people-watched....crazy night!

We made it on the jumbo tron a couple of times and Morgan got a jersey #9 with Watson on the back....they have a Watson on the team (#11) but his jersey isn't available...

Thanks Eric for lots of fun and some great memories!

Wednesday, November 17, 2010

Radiation Oncologist

I didn't even know that there was any such person as a Radiation Oncologist, but that is who we went to visit today.  We met an amazing lady who is just so nice and easy to talk to. When Morgan feels comfortable and trusts the doctor, that makes all of the procedures that much easier to cope with.  She told us that she has a daughter who is 16 and that our surgeon, Dr. Neumayer and breast oncologist, Dr. Beck, do also.  I have asked each one of them what they would do if it were their daughter because I have discovered that it would be MUCH easier to be doing this if it were my disease, but making decisions and watching my baby go through it is much more difficult. She agreed and said that we had created a perfect medical team (accidentally) who would be making decisions and working just as if Morgan were their own daughter.  She also let us know that Morgan is very popular in their world and it was nice to finally put a face to the name.  Medical Specialists are discussing her case and speculating on how to best treat her cancer.....she told us that she often wakes up at 3 in the morning and thinks about Morgan's case and what is the best thing to do. 

Dr. Avizonis told us about some different radiation options and informed us about how it all works.  She explained that radiation is just like laying in a tanning bed for 15 minutes a day.  They direct the radiation beams to hit the spots they want to kill without having the beam go through another area they don't (like her lungs).  After 30 sessions (M-F for 6 weeks) Morgan will be finished and have a bit of a sunburn on her chest.

As soon as Morgan is finished with her chemotherapy on December 21st, she will have another PET scan done to see if the chemotherapy killed everything it needed to.  We went the chemo route first because it is systemic which means that it flows through her blood into every part of her body and kills anything which is dividing and growing at a fast rate (which is why you lose your hair).  Hopefully it did its job and killed any random cancer cells which may have escaped from the original tumor.  We already know it made its way into two of her nodes because of the way they lit up on the PET scan.  We are REALLY hoping that it did its job and that there are no random cells growing themselves into another tumor somewhere else in her body.  That would definitely be a VERY bad thing.....Metastatic Breast Cancer (at this time) has no cure.

The radiation is a more specific type of localized treatment and is particularly important to reach the lymph nodes in the center of Morgan's chest behind her breast bone.  It is so difficult to get to them, it is a much better solution just hit them with a ton of radiation and kill them.  They won't physically be removed...ever (so no big scars or saws will be needed).

All of this information is going in our brains to be processed along with all of the surgical options we discussed last week.  On Tuesday we have another appointment with the Plastic Surgeon to pick up a little more.  When we put all of it together, hopefully we can make an informed decision on which surgery to do in January......Lumpectomy or Bi-lateral Mastectomy....hmmmmmm?!?!?!?!?  Trust me, there are several pros and cons for each.

Thanks again for the continued love and support.  We are being fed very well by women in the ward and members of Boyd's family.  Members of mine and Johnny's families are driving down to help out with the medical visits and running the house. Our next door neighbor brought over two tickets to the Jazz Game for me and Morgan to go to next week!!!! 

We can feel the overwhelming outpourring of love and service.  This is what life should be about, helping out when and where we can, thinking more of others than we do ourselves, and paying life forward.  You never know where your own life will lead you, I hope you can miss the road we are on, but life isn't meant to be spent alone trying to do everything by ourselves.  It has been a humbling experience for me to realize this.  I still have a difficult time asking, but I very much appreciate what is come in return. Thank you truly....

I would love to tell you exactly what the treatment plan is, but there are so many variables to Morgan's case that just don't fit anyone else around.  Each aspect of this has been seen before....just not all in the same person....and just not in someone who is 16!!!!

Still trying to figure out some fundraising options, how to get Morgan's story out to those who can bring the right kind of attention to it...any suggestions or help with personal connections would be very much appreciated!!!

Thursday, November 11, 2010

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!

Wednesday, November 10, 2010

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!

Sunday, October 31, 2010

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...

Sunday, October 24, 2010

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!!!

Wednesday, October 20, 2010

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!!!!!

Saturday, October 16, 2010

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

Friday, October 15, 2010

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!

Thursday, October 7, 2010

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!

Friday, October 1, 2010

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

Wednesday, September 29, 2010

Another Shot....Another $6,000!!!

It is pretty obvious that this time around is a little bit harder than the first one three weeks ago.  Morgan is very tired and cannot seem to get comfortable whether sitting, lying down, standing, or walking around.  We went into the doctor's office to get her 2nd Neulasta shot today.  This one seemed to go in better, at least from my perspective.

Morgan has lots of pills to take...some for nausea, some for pain, some vitamins, amino acids, some to help her sleep, and even another to give her some energy.  The rest of the family is going in to get flu shots tomorrow to help keep her from catching it from one of us.

We have about two more weeks to wait for the genetic test results we took at Huntsman Cancer Institute.  But, we have a blood test to check on her white and red blood cells next Tuesday.  It is hard to imagine we are only one month into this....with so much more to go!

Thanks for all of the love, support, and prayers on our behalf.  Thanks for the meals, cards, gifts, and fundraising events.  Pink is everywhere!!!

In Rare Form!!!

Here is a clip of Morgan having a rare moment of fun this evening...she decided to suck out the helium from her 16th birthday balloon and sing us a little song...it isn't THAT surprising if you really know Morgan... :)

Friends in Montana!

Just want to share an email we received today!  It is amazing the love and support from people around the country who don't even really know Morgan, but know her story and find it inspiring!

Jana & Kylee,

Just wanted to let you know about some of the events happening here in Montana for Morgan.  Tomorrow night (Thursday) our volleyball team plays and the entire campus is wearing PINK!!  I will send you some pictures!!  We are also donating all of our income from the game to breast cancer research (sorry we couldn't donate to you directly, but the university wouldn't let us donate to an individual person--I really tried--but we are going to donate it in Morgan's name).

Also, Jayden just made student council in junior high and they are doing cancer awareness and we are making some posters about Morgan and they are wearing PINK all next week!!  We are all praying for Morgan (even all these people who have NO idea who she is)!! 

Just thought you would like to know!  I will send pictures as I get them

love you
megan

Dr. Megan Chilson
Program Coordinator
Associate Professor
Health & Human Performance
The University of Montana Western
710 South Atlantic
Dillon, MT 59725

Tuesday, September 28, 2010

One-third of the way!!!!


Today was round #2...and that dang Taxotere just does NOT like my little girl!  Luckily, they had given her an extra bag of "pre-medications" like Benadryl and some steroids to help counteract the reaction she had last time.  It didn't prevent it, but it did help.  She turned bright red, got really hot, couldn't breathe very well, but the blue face was more like gray.  Today she lasted about five minutes (only 3 minutes last time) before she could feel it creeping up on her.  It begins in her stomach, then rises to her chest which is what affects her breathing, and then to her head.

Since she doesn't have any hair anymore, I could see just how red it became!  She said that her face felt like it was full of liquid, which would explain why it swells up so big.  Apparently she and that drug are sworn enemies!!!  Luckily she had four parents in the room with her at the time. 

Tonight she has been VERY tired.  She just really needs her rest right now.  It is obvious that today was hard on her both physically and emotionally.  She is a little bossy :) but that is okay.  I think I am floating in the same boat with her.  I think we could all sleep for 24 hours at this point!

Sunday, September 26, 2010

Pictures please

Hey everyone, I just thought it would be super cool for you all to take pictures of you in your pink get up tomorrow (or future chemo days) and send them to us. We know a lot of people are supporting Morgan that we don't get to see and we want to share all of the support! So please please please send us some pink pics! You can just email them to kyleelabrum@hotmail.com... maybe you'll get a spot on the blog. :) Love you all!

Wearing Pink!!!!

This Tuesday will be Chemo Round #2....We are wearing Pink on Monday in honor of Morgan....Let everyone know! Just like last time, only a day early so that Morgan can see it at school and around town.

She went to Church today in her dress from Homecoming and her black beanie....she is such a cutie!!! Our ward dedicated their fast to her and another ward member. Fast and testimony meeting was amazing!! So many people are willing to do anything for her and for our family....it is overwhelming to me. Just know that we appreciate it and feel your love every single day!!

We have so much to be thankful for. I see small blessings almost every day...honestly didn't think that would happen!

Saturday, September 25, 2010

Wearing Pink on Monday!!!!

Next Tuesday (28th) is Morgan's 2nd round of chemotherapy. We had such a great turnout of people wearing pink last time...saw it all around town, the school, in Walmart....Amazing!!!

Morgan didn't get to see all of the pink and felt kind of left out. I say that everyone choose to wear pink on Monday...that way she can see all of the support and have that in her mind as she goes into the treatment on Tuesday morning.

Pass this on to everyone know....WEAR PINK FOR MORGAN'S CHEMO ON MONDAY!!!!

Homecoming

Cody showed up today and they spent the day together. Went with some friends to Snowbird and then home to change into their dress clothes. Dinner at Buca di Beppo's and then off to the Riverton High School Homecoming Dance!! Better be home by midnight...:)

They look super cute in black and lime green...Morgan with her black beanie and black Van's shoes!!!

Friday, September 24, 2010

Halloween Ideas!

Morgan: I could draw a line down the center of my head...
Mom: What would that be?
Morgan: Then I could be a Butt Head!

Thursday, September 23, 2010

Her hair is gone!!!!


Morgan chose to be in control of when and how her hair came out. It was starting to fall out in small clumps and Morgan wasn't really happy about that. Tonight, Morgan sat in the kitchen while Boyd, Riley, Kaylee, Travis, Taylor and I used scissors to take turns cutting small swatches of hair and putting them in a baggie.

I was able to make the first cut...and it was definitely the hardest. Once all the hair had been removed, we used shears to buzz it and clean it up. She looks amazing!!! Her head is a perfect shape without any strange markings, scars, or strange freckles/moles. You can see where her "angel kiss" belongs just over her left ear. It looks exactly like it did when she was born and had such a little amount of hair. It is in such an odd shape...sort of like Italy and Greece on the world map!

She went to Riverton's Burning of the Wolf for Homecoming right after her hair was finished. She had a beanie to wear that is her school colors and if you didn't know what we had just done, you couldn't tell. Tomorrow is the football game and then Saturday she is going to the Homecoming Dance with Cody. We still working on adjusting her dress to fit just right, but she has a solid black beanie to go with it! Leave it to Morgan to have the strength to just walk in with the "love of her life" on her arm and show those kids how things are done!

I have been trying to contact different breast cancer foundations and groups. I wrote to the co-founder/executive director of the Pink Ribbon Girls for younger breast cancer survivors. She just wrote me back and gave me her personal cell number and email so that I could contact her if needed. The support and caring of perfect strangers is just so much appreciated and so very welcome! There are days that we all wonder how we are going to make it just one more day...and then we do!

Our Church ward is going to hold a special fast this Sunday on behalf of Morgan and another ward member who just found out he has an aggressive bone cancer. Any and all of you are invited to join us(and them)!

I love my sister because...



She always makes me laugh.

She stood up for me when I was in fifth grade when I couldn't do it myself.

She is unique.

She used to let me do her hair sometimes even though she hated it.

She watched Mary-Kate & Ashley movies with me.

She has her own style.

She is spontaneous.

She is smart.

She makes fun of me.

She used to ride scooters with me.

She trusts me.

She was the best Maid of Honor at my wedding.

She shows me good music.

She is adventurous.

She has been through everything with me, the good and bad.

She loves people with her whole heart.

She has the most beautiful eyes.

She is brave.

She is my hero. A perfect example of how to live life to its fullest.

I love you Morgan Sage.


Monday, September 20, 2010

Change of Plans

Huntsman Cancer Institute called me today and let me know that last Thursday Morgan was the topic of their staff/patient review meeting. At that meeting, the radiation oncologists decided that she most likely NEEDS the radiation. Therefore, we will NOT be having a needle biopsy this week. Her blood was sent to Baylor and will most likely take three weeks to come back with the results we are looking for.

Morgan passed her road driving test today!!!! So everybody watch out!! She has already informed me that I don't need to be in the car with her when she is driving anymore.... SAD....my baby girl is growin' up!!! She made it through the entire day at school and this is supposed to be a much better week which will end with the Homecoming Dance with Cody!!!!

Sunday, September 19, 2010

Morgan's New Haircut!!!

Morgan's hair is starting to fall out. Today it started to fall out in larger clumps. I can see on her face that it is really getting to her. She doesn't want to stand out and be the "sick bald girl." Kaylee has been staying at our house for a few days and she offered to cut her hair so that when it falls out, it won't be quite so bad. IT IS SOOOO CUTE!!!! Thanks Kaylee! We think that Morgan may even like it herself...:)


Morgan is planning on going to school every day this week as it is supposed to be her best week so far. She has her road driving test tomorrow so she can get her driver's license. Her next round of chemo is scheduled for a week from Tuesday (28th). We are going to talk to her doctor tomorrow about the mammary node needle biopsy that was suggested up at Huntsman last week. No idea whether it will happen or not, but if it is, it would be best to do it BEFORE the next chemo treatment. This means, that she may be headed to the hospital this week...or not. We just live day to day around here. Never know for sure what is coming next.

There are so many people who are being inspired by Morgan's story. Especially those who are closest to her. She is an inspiration to me...she has a great attitude most of the time and does her best to find the humorous side of things. She told me that she is going to be the hottest bald chick! I LOVE this girl so very very much!!!

Saturday, September 18, 2010

Huntsman Cancer Institute

Monday and Tuesday were good days. Morgan went to school and lasted throughout the entire day! Wednesday she woke up a little tired and a bit nauseous so she stayed home. Jamie, Morgan and I met Johnny and Crystal up at Huntsman Cancer Institute around 3:30. We were to meet with Amanda Knoth, a genetic counselor. She explained that since Morgan has experienced two different cancers in her short life, that there most likely is some sort of genetic component to it. A couple of weeks ago her BRCA test was negative. The BRCA is a chromosome which is directly linked to inherited breast cancer. Obviously I was a little bit confused at why they were working on something that was already considered a non-issue.....obviously, I have learned a lot about cancer during the last month, but there is still so much more to learn!

There is a specific test that Huntsman is interested in for Morgan. I am not going to include the name of it here but as we have learned, each of us all have cancer cells in our body. We also have a protein/amino acid which fights off any cells that are threatening to grow into a tumor, which works a lot like white blood cells fighting infections and building up our immunities. This is why many people never get cancer in their lifetime. The test is to see if that particular gene in Morgan has some sort of mutation which will make her more susceptible to other cancers as well. The good news about this is that if she is positive for the mutation, she will have a very thorough screening process to catch any type of cell growth early enough to take care of it without having to go through chemo or radiation.

We met with a pediatric oncologist, Dr. Schiffman, and a breast oncologist, Dr. Buys who have already been meeting and discussing Morgan's case. After about three hours of questions and further discussion, we were told that Morgan's case would be the topic of discussion the next morning at their staff meeting. They took some blood and will let us know the answer within 2 - 3 weeks. So now we wait. They are fairly certain that this will be positive, but if not, there are other tests lining up as possible, but less likely, options. When we find out what she has, then they will test me as well and go from there.

The reason that this test is so important is that it may change the course of treatment Morgan has for her breast cancer. If this test is positive and she does have this particular Syndrome, we may not do the radiation after the chemo rounds are finished. The doctors suggested we talk to our oncologist about doing a needle biopsy (this week, in fact) to see if her two internal mammary nodes actually have cancer in them or if they showed up on the PET scan due to inflammation from her surgery. This would be important in deciding about the radiation treatment as well. Radiation is something we want to avoid if she has this mutation and would not be necessary if there is not cancer in the nodes. If there is, then we need to weigh the options and do what is best for her. Either way, there will be at least one more major surgery in Jan/Feb and a full-body MRI every six months or so for many years to come.

Every day it feels like there is so much more to take in, process, and accept...it is quite stressful and somewhat confusing. I have actually been to five different doctors this week M-F and filled at least nine different prescriptions as well! Whew!!!

Morgan stayed home Thursday also, but we went into Riverton High to meet with her counselor and fill out the paperwork which will allow her to do Home & Hospital. This way she can stay enrolled in her classes, attend when she feels like she is up to it, but when she is absent, the absences won't count against her!!! We decided that was the best option since she does her best when she is around her friends. It perks up her attitude and it is great to see her smile. We got to see a sign put up in the commons that says...Prayers for Morgan Watson Stage II Breast Cancer.


Friday she went to school and during the first class of the day, was surprised by the entire football team and the head coach. They came into her class and Coach Miller talked about special students they like to honor each game day. The coach looked right at her and invited her up front to stand by him. He told the class about how her older brother had played for him a couple of years ago and that he had taught with me. The entire team sang to her the school "Fight Song". Morgan said that both she and the coach were crying. This is the text she sent me..."Oh my gosh :) :) it was so freakin cool! In my first period, the football team came in and sang the school fight song for me in support of everything :) :) i cried."

She must still be feeling pretty good since she decided to spend the night at a friend's house. Next Saturday is her big Homecoming Dance and she is really hoping that her hair is able to attend the dance with her. :) but it may not make it...

As always, we all appreciate your love, prayers and support. Sorry for all the kids getting detention and sent to the Principal's office on behalf of the "I love boobies" bracelets...just turn 'em inside out!

This experience has been extremely humbling for all of us. It is so difficult to go through even though so many people have offered to help and prepare me for what we are doing. I told my own doctor today that if we weren't receiving all of these prayers and having our names place on many different temple prayer rolls, I am not sure we would make it through some of these crazy days and nights. Thanks again for all you do for us!!!

P.S. Morgan has a really cute new t-shirt that is hot pink with two baseballs strategically placed on the front and it reads below: Save Second Base!!! (she won't be wearing it to school, I am sure!) website is: save2ndbase.com


Sunday, September 12, 2010

Saturday Night Party!!


Last night Morgan got to celebrate her birthday with her friends...about 20 of her friends stopped by to have a party. Her boyfriend Cody came up to visit from St. George and our neighbors Cami Hansen and Julie Toone made her an awesome birthday cake! They played lots of fun music out on the deck while kids danced and jumped on the tramp. Morgan sat and watched most of it, but you could tell it lifted her spirits quite a bit. She joined in on the "Ice Cream & Cake" dance though. :)



It has become more and more obvious that Friday was her "bad day." She wasn't really nauseous but extremely tired and slept most of the day. Today, Morgan seems to be a little bit more like her usual self, and that feels really good! She is planning to go to school this week as long as she can handle it. We need to figure out all of her options for school though. She could stay in school and just try to make everything up as she goes, sign up for home & hospital which would allow her to stay home but stay enrolled in the classes she is in right now, sign up to take packets instead of going to classes at all, or we could sign her up for internet high school. So many decisions to make!

This week she has two appointments that we know of. She will be having her blood drawn on Tuesday to check her red and white blood counts as well as to check her blood toxicity levels. Wednesday we are going to the Huntsman Cancer Institute for genetic counseling. The doctors already did a DNA test looking for the BRCA1 & BRCA2 gene mutations which is an inherited gene for being more susceptible to breast cancer. Her tests came back negative so I was a little confused as to why we are getting more tests.

I talked to Huntsman and was told that it is still possible she has the BRCA mutation, but that it may be located on a different chromosome than the usual one for breast cancer. They can compare these test results to other young kids who have unusual cancers and see if she could have some genetic condition or syndrome. This would help explain why she had a tumor at age 1 on her adrenal gland and breast cancer at 15. I recently looked the 1996 pathology report from PCMC regarding that tumor and it stated that it wasn't necessarily an adenoma (benign) or a carcinoma (malignant). It was categorized as a neoplasm, which means it could be one or the other. This is the first I have heard that. Those of you who don't know or remember THAT story....well, let's just save it for another day!

Once Huntsman knows what it is, they can screen for it, and possibly could have a medicine to help some underlying condition. I have been doing the research on the Triple Negative Cancer and found that it wasn't really diagnosed as its own type of cancer until just in the last six to ten years. I have to wonder if maybe her adrenal tumor was also a Triple Negative Cancer and some random cell hung around and found its way to her breast. I could be totally wrong, but how else would the same girl have such unexplainable, <1%>
Lots of people have been asking me what they can do for us....it is hard to just ask for help when it isn't the little specific things that we need. Just keep praying and supporting as you have. A financial miracle could help! :) I am sure there are foundations or grants available to help with medical expenses. I just don't have the time to search out those avenues of help. If anyone has some information or knows someone who can help us in this area, please contact me. My email is janapendleton@hotmail.com. Thanks again for all you do!

Saturday, September 11, 2010

Morgan's Message Is Around The World!!!

My friend Kami sent this to me and it was so amazing I wanted to share it with all of you! It is amazing...the power and impact that Morgan's story has had on so many people in so many places around the world!

September 9 at 1:21pm
Jana,

This is from Chris's girlfriend in Seattle WA:

Hi Kami. Your Mom talked to Chris yesterday and let him know about Morgan. SO sad! Just wanted you to know she's in all of our thoughts and prayers. I asked for prayers on my wall yesterday too. I am also a part of a Random Acts of Kindness group that a friend from Ann Arbor started. We're at about 2500 members strong right now. Well today I found this as our Thursday message and thought I'd pass it along to you:

Hello all,

As you can imagine I get many many requests and suggestions for our do good Thursday. I try to place them in a list and get the items I can in a challenge to you each week.

Yesterday I have read a status from one of my favorite Pacific West Coast do good warriors. The status talked about a young girl of the age of 15. At 15 this young lady should be worrying about the dress to the homecoming dance, having fun thinking about Boys, looking forward to when she turns 16 and getting her "freedom" in a form of a License.

Instead this young Lady by the name of Morgan is in the fight of her life, a fight that most of us will never truly know. Morgan is 15 and was diagnosed with a highly aggressive form of breast cancer.......at 15....

As a parent myself, as a person myself reading this just breaks my heart to say the least.

So this week’s do good assignment, I am asking each and everyone of you not only to pass thoughts and prayers to Morgan and her family, but on Tuesday September 14, I declare is support Morgan day, I ask that you wear pink in Morgan's honor so that we may send her our do good vibes letting her know that on this day, we the warriors of RAK are behind her and we are here thinking of her on this day.

Do good warriors of RAK I hope you can join me on Tuesday in Honor of this 15 yr old girl named Morgan and let’s take the day to send our RAK to her in this small gesture of support!!

Thanks for all you do my friends!!

FrankO

ps.FROM DIANE:
Just got an update from Frank and he got over 500 emails from people in the group talking about wearing pink for Morgan on Tuesday. A lot of people are recruiting people in their office to wear pink for her too. So if you talk to Morgan's Mom or Janice, let them know that people all over the country are going to be praying for her. I guess that's the power of Facebook, huh?

Friday, September 10, 2010

Taking Precautions...

As people come and go, we need you to remember that germs are bad... We have hand sanitizer right inside the front door, but that doesn't necessarily fix everything. Now that school is in session, the weather is turning, and flu season will be starting, we need you to be extra careful of what comes into the house.

Many of us don't even think about it, myself included, because our own immune systems are healthy and can fight off most things. Her body is more like a newborn's in that it can't fight things off. My sister, Jane, is in the hospital right now in Florida. She has been having chemo treatments and her fever spiked. It is a very scary thing.

During this first week after the chemo treatments especially, I ask that you let Morgan rest as much as possible. She usually will sleep in to mid-morning, take an afternoon nap, and needs to go to bed much earlier than she usually does.

This doesn't mean she needs to be isolated, but just think of your timing. Between nine or ten at night, especially this week, she needs to be told good night and then left alone to sleep. She has been going to bed with her cell phone in her hand just in case someone calls or texts her. PLEASE don't text her early in the morning or after 10:00 at night. She needs her rest more than anything right now.

Morgan's Birthday!!!

Morgan was soooo excited to go to school today! She couldn't wait to see her friends. She did pretty well and made it part way through the day before she called me to check her out. Her Aunts Autumn & Charity drove down from Rexburg with a birthday cake and surprises for both of us. They all went to the movie just to get Morgan out of the house and involved in something non-cancer related. It wore her out but was a great diversion.

So many people came to visit and wish her well. It was a good day overall and amazing to me that it has been 16 years since she was born. Morgan is so much fun and always saying or doing things that you don't expect....even now, she keeps us laughing. When I see that, it makes me feel better that she is being herself...it means that she is feeling okay. But, she has many times commented that she "doesn't want to do this anymore." She is coming to terms with what is really going on.

At the end of the day, we talked for a while in her room. She asked me to relay a message on the blog. She is worn out. So many visitors and well-wishers is exhausiting her. She feels bad because she knows they mean well. But the more everyone tells her they are praying for her or are sorry, she can't escape being the "cancer girl." This is all soooo overwhelming for her, for her family, and I am sure for all of you as well.

I will say though, that she perks up when her friends come around. It does make a positive difference. So keep showing up, just spread it out, limit your time, and don't come in large groups.

Believe me, we all feel the love, concern, support, and spiritual blessings that are coming from each of you. We couldn't do this without it. In fact, we are a little overwhelmed at how much support there really is out there for us. Know that we love you back. We appreciate you and all that is being done on our behalf, truly. Thank you!

Thursday, September 9, 2010

Happy Birthday Morgan!!

I can't believe my beautiful sister is 16 years old!! I remember the first time I saw her. Holy cow! I'm so proud of you Morgan. I can't imagine what my live would have been like if you hadn't been there with me the whole way. "Always remember you are stronger than you know." I can't wait to see you tonight... here is your card in advance :) I love you Morgan Stage. ;)



Wednesday, September 8, 2010

$36,000....REALLY???

Morgan was really tired last night. She had a few friends come over and watched 4 Harry Potter movies! Today she was a little nauseated and tired. At 3:30 we went back to the doctor and she had her first shot of Neulasta.....just as the nurse told us it cost about $6,000 each!!!...and she has to have it six times!! But it is very worth it since it helps her bone marrow build up white blood cells to help her fight off infections. Thank heavens for insurance! This shot will most likely make her bones ache but we are told that she should feel much better by next week. So for now it is Ibuprofen and Compazine.

Thanks to Aunt Jamie (RN) for staying with Morgan while I went back to work today. She has been to all of our doctor appointments and sat with us through the chemo. It REALLY helps to have a medical mind to help decipher all the information we have been given. We have been told that Morgan will be experiencing a "bad day" which is supposed to fall on either Friday or Saturday. I will be staying home with her then.

The surgeon called me with the genetic test results. She does NOT have the gene mutation so there is no need to test any of the rest of us. It appears that this is just a random cell mutation. I always knew Morgan was random but this is absolutely ridiculous!

Tonight we had dinner delivered by the HHS FCCLA officers and Mrs. Shore. They brought a basket full of pink items like fuzzy socks, a blanket, bubble bath, and a movie. Thanks a bunch! We are so lucky to have such good friends. We have an entire table full of cookies, cakes, cards, movies, and other treats. Thanks to everyone.

Don't forget it is Morgan's Sweet 16 Birthday tomorrow!!!