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!!!!

1 comment:

  1. Thanks for the update. We have been wondering what is going on and it is nice to hear it all. Let me know if you need a girls day out sometime.