When we discovered the Waves of Grace nonprofit organization, we knew we wanted to get involved and provide the families with a long lasting reminder of their meaningful family vacations. Waves of Grace sends cancer patients on vacations with their families so they can try to relax and step away from the stress that comes along with their fight with cancer. For some patients, these vacations are the last they will be able to take with their family. For Miss Macey Bodily, she and her family are still going through all the trials and tribulations that come along with a cancer diagnosis, but they’ve made some great progress and we hope to continue to watch her journey with positive updates!
Macey’s Story as Told by Her Mother
An MRI in February of 2014 found a massive tumor, the size of 2 golf balls in the middle of Macey’s brain, causing her blindness and some other issues as well! She was admitted to Doerenbechers Children’s hospital the very same day, and underwent cranial brain surgery 36 hours later. The surgery was 9 long hours, and her amazing surgeon Dr. Baird and her team were able to remove the tumor successfully! She lost her pituitary gland in the process and will require lifetime care for that. That is a life threatening condition, which we manage daily with medication. It is also life long condition. She will remain blind in one eye and need to wear glasses always to protect her good eye.
On August 5, 2015 we were told that Macey has a regrowth, detected by MRI, 2 tumors or 2 cystic tumors in the exact location as the first. We were given another brain surgery as the only option. That didn’t sit right. Through a support group we were led to St Jude. They are conducting trials on her specific tumor. In September we traveled to St Jude for a few weeks of testing and determined that Proton radiation would be the best answer as the doctors felt surgery was far to risky based on the location of the tumors. They were too close to her optic nerves and carotid arteries.
In October 2015, Macey and Mommy boarded a plane for 7 weeks of treatment at the University of Florida in Jacksonville Florida.
Macey tolerated the daily treatment like a champ. How she did it with a mask attaching her head to a table, wide awake for 30 treatments is beyond me. She had to lie perfectly still. Amazing for anyone, let alone a 7 year old little girl, whose mommy couldn’t go back with her.
We continue to travel to St Jude every 90 days and will for a year, after that we will go every 6 months for 4 years, then every year till she’s 18 if all remain status quo, After that she will enter the St Jude life program, where they will monitor her for her life. She still sees her doctor here at home as well. Needless to say, we see a lot of doctor offices.
In January and most recently, March 2016 her MRI’s determined she is stable, with no tumor growth! We are grateful. Her remaining vision is stable as well. We work daily to maintain her lack of hormones, which is a delicate balance and necessary to stay alive!
October 2016 Macey was diagnosed with stenosis of her carotid arteries. The original tumor backed up to and actually wrapped around both her carotid arteries. Thus the issue. It puts her at increased risk for stroke and a variety of other issues. Needless to say this took the wind out of our sails. Thankfully though, St Jude is following this closely, along with her neuro surgeon at Doernbechers who amazingly specializes in stenosis. Wow, right! As of now things are stable, which is the best we can hope for.
In Jan 2017 we added a new diagnosis to the list, narcolepsy. Wish I was kidding!
In Feb of 2017, Macey underwent another surgery this time to remove the metal hardware in her skull that was causing severe headaches as well as to reattach a temporal muscles flap that had detached after her first brain surgery. This isn’t altogether unusual on either count. It turned out to be a bigger surgery than we imagined, they reopened her entire incision from the original craniotomy. She has healed well.
Since October of 2016 Macey has just struggled overall with fatigue and headaches. The hardware removal helped the headaches, but the fatigue still lingers and has made school difficult…If she makes one full day a week, that’s great. We hope that this eventually will work itself out, but we just don’t know. So for now we take things day by day and thank God for all we have. This surely is a crazy adventure, or better yet a roller coaster we call life!
Overall we feel very blessed and supported. We are grateful to have our daughter!