About our blogger: Haveyroo
My 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.
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. Please check out her page and keep yourself up to date on Miss Sophia.
I would like to tell you a little bit about my Sophia. She is the youngest of six and was born on October 19,2004, by C-Section. She was only a C-Section because i had one before her. She weighed in at 9 pounds 6 onces and was 21 inches long. Sophia was healthy but she was diagnosed with kidney reflux at 3 months old and antibiotics took care of it. She would out grow the kidney reflux by her second birthday. When Sophia was 18 months old she was tiny at 20 lbs but by the time she was 22 month she had gained almost 25lbs her pediatrition sent us to the OWL program at childrens hospital that’s when we met Dr. Rhodes. i explained Sophia’s symptoms – the throwing up, the thirst, the constipation. So after 2 long years of medical appointments and testing Sophia has been diagnosed with ROHHAD syndrome.
( Rapid onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation).
We have a long road ahead of us and not knowing when her body will stop working is very difficult. Just knowing that is a daily struggle. I will try and update Sophia’s progress daily in her journal and will soon add pictures and medical updates and appointments. I want to thank everyone for the support I have received since receiving Sophia’s diagnosis.
We are almost 2 years into our diagnosis and things have progressed with Sophia’s symptoms and she has gotten more symptoms and has lots of medications to take each day. I have meet some great ROHHAD families since her diagnosis and the internet has brought all of us closer together. I will continue to spread the word about ROHHAD in hopes that more families will be able spread the word. And to help other families who are looking for a diagnosis for their child.
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 want to push her to a 12 week schedule instead of every 8 weeks. We found out that she is still on IVIG
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 blessed to have known her and had her in our life. We will miss her but take comfort knowing she is
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!!!!
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 month break, and then we’re in ever two weeks for a month….then another month break. Every few months she will head to SLC Primary Children’s for a full run down of labs and check ups.
Her room was very nice at this hospital. It’s bigger than my labor and delivery room, and she had a private bathroom. I was very surprised and happy. She was very well taken care of. Read the rest of this entry »
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. Haven is so different than she ever was before treatments began.
So next Tuesday we will be spending our day in SLC. She will be meeting with an Oncologist there to review her current dosage of IVIG and see what they think. They are in contact with her other doctors and I know there are two other ROHHAD families that go there. We may even be meeting up with them while we are there.
I scheduled our appointment at 1:30 in the afternoon since it’s a 5 hour drive there and a 5 hour drive back. Rules are that siblings under 18 years old can’t be on the Oncology floor. So I’m not sure what they are expecting me to do with an 11 month old baby. We’ll deal with that when we get there I guess.
I’m not sure what to expect Read the rest of this entry »
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 for about 3 weeks (horrible one) and we’ve tried everything. He checked her over and it seems as though she has asthma. He also let me hear her breathing and at the end there was a wheeze and a pop sound. So she has been prescribed two different inhalers. One is for twice a day use and the other is for emergencies – especially at night. She will go back to see him in two weeks.
2. We will meet with a surgeon in SLC as Haven will need to undergo surgery to remove her old port and have a new one put in it’s place. They will ultimately have to keep her for a bit for this. Haven has an allergy to anesthesia and needs to be watched extremely close Read the rest of this entry »
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 bit of a party dance.
I was hoping Haven would be enjoying school as much as last year, but she says she is a little bored and it’s just not interesting. This is a bit concerning to me. She reads like a crazy woman, and I think it’s just not challenging enough for her – not to mention she really argues with us about having to do PE class. On with the rest of the year. Teacher conferences are coming up.
She will be home half of this week due to the flu mist at school. She is not allowed to attend because she has a weak immune system.
If you know me….then you know a child fighting cancer.