Posts By Haveyroo

HaveyrooMy name is Misty Fowler. I am a wife of 9 years and a mother to a 6 year old with Ganglioneuroblastoma Cancer and ROHHAD Syndrome. I work for a sport clothing apparel company. I currently work to learn more about my daughter's rare diseases and take pride in nurturing my family.

Sophie’s Journey

This is our friend Sophia.  She has been a long time friend of Haven’s and we love her family dearly.  Lately Sophia has been struggling with getting help from doctors and has been waiting to start treatment.  I have included a note from her mom below and there is a link to her Facebook page….

Haven visits Oncology

Yesterday we spent the morning at Primary Children’s getting more labs.  We checked her IGG levels, Calcium, and did a full panel on the liver.  There are a few questions I had on some things that are requiring a liver check.  We should find out today if we need IVIG this week or not.  They…

ROHHAD: Kira – 9 years old – passes away :(

Kira, 9 years old, gains her ROHHAD angel wings Dearest friends….it is with a heavy heart and sadness that I must share that one of our sweetest and dearest friends has lost her battle with ROHHAD and gained her angel wings.  I have known Kira and her family for a few years now and am…


Happy birthday to my beautiful baby girl!!!!  Can’t believe you are 9 years old today.  In your short 9 years you’ve managed to overcome cancer and survive some of the scariest surgeries and have taken control of ROHHAD Syndrome.  You amaze me and your father and we couldn’t be more proud of you!!!!

School blues

Haven had her school pictures taken.  She is just getting so grown up.  I can’t believe she’s 8 years old.  It’s amazing and crazy at the same time.  She loves these hair flowers she gets from her Uncle Kevin in Hawaii.  She has one for every outfit in most colors. Maybe some moms out there…

IVIG received – much needed

On Tuesday, we headed out to our other new hospital – Huntsman Cancer Institute in St. George.  This is where Haven will get her port flushed every 4 weeks, and then every 6 weeks she will get her labs drawn, and then every 8 weeks she will get IVIG.  So, we actually get a one…

ROHHAD and our battle!

Well we are introducing lots of new doctors to ROHHAD lately.  We do seriously hope that by 2013 Haven’s ROHHAD treatments will end and she will just be monitored.  It’s been 5 years now!!!  But honestly, we still to this day couldn’t be happier that we stuck with the treatments and pushed through the pain. …

ROHHAD review

We met with Haven’s doctor today in St. G. He’s a very nice doctor and listened and knew some about Haven already which is GREAT!!! I also took all of her files in and gave them copies so they would have the latest information on her. A few highlights: 1. Haven has had a cough…

Back To School Night

We were very excited to go to Haven’s back to school night.  She was looking forward to it and wanted to see all her old friends and meet her new teacher.  So far, she is doing an excellent job.  She has had two tests and both of them were 100% …. so we’ve done a…