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 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


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 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 me, I know!  We have all agreed that going through with the double mastectomy is the best option for saving her that is what is 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 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 if any of you want to add to the 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!!!!