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.
April 21st, 2012
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 can help me with something. For the first time ever, Haven does not want to go to school anymore. We (dad and I) really like this school for it’s educational values, but Haven is having a really rough time with the kids suddenly. Many of the girls are picking on her or making fun of her, kids are blaming her for “stealing” from them, saying she called another girl “fat,” and now all the kids call her rude and mean. I really don’t know what to do. Haven has always loved school and would rather be at school, but now she doesn’t want to go at all. She says she is told to handle it on her own, and she is trying to do that but doesn’t know how when all the kids believe the other kids. She told me after school yesterday that she can’t believe she has to go for another 6 weeks…that she’s counting down the days when she doesn’t have to go back. This makes me seriously sad. I’d rather home school her then have her not like learning and going to school.
So please, if anyone has any help or advice for me here, send it my way. I’m not sure how to help her except to tell her to ignore them and focus on her studies. But reading about horrible teenagers in the news lately, I don’t want her to grow up - end up in high school with no friends - being made fun of - and then going berserk.
April 12th, 2012
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 »
April 3rd, 2012
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 »
March 28th, 2012
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 »
October 8th, 2011
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.
September 13th, 2011
If you know me….then you know a child fighting cancer.
August 31st, 2011
Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal, and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.
We met with Haven’s Endocrine doctor on June 20th and discussed Haven’s need for growth hormone. She has stayed in the 5th percentile since Hi CY. We decided we would check the levels and see where she is. We received an email that Haven is at a level 71. A normal IGF-1 level would be around 250 or so - with a very low at an 88. Normally, a child grows about 2 inches per year. A child with growth hormone deficiency usually has a growth pattern of less than 2 inches per year. In many cases, the child grows normally until he or she is about 2 or 3 years old; then, signs of growth delay begin to show. We were told that Haven will need to grow 2 inches by December in order to not be put on the GH treatment.
Haven may have to do a stimulation test before treatment. What is this?
- GH stimulation tests help to diagnose GH deficiency and hypopituitarism. For a stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then, under close medical supervision, a person is given an intravenous solution of insulin or arginine. Blood samples are then drawn at timed intervals, and GH levels are tested in each to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH. Other GH stimulants include clonidine and glucagon.
Treatment? Read the rest of this entry »
June 24th, 2011
On June 2nd, we spent the day with a NeuroPsychologist at Kennedy Krieger Institute. KKI is an internationally recognized institution which helps children with developmental disabilities. They have a high focus on brain, spinal cord, and musculoskeletal related disorders. We have been there a couple times before but have not met with this department. This time, we were sent over to have Haven evaluated for Asperger’s Syndrome - an autism spectrum syndrome. When we first started to try to diagnose Haven in 2006, we started with this syndrome (along with Prader-Willi Syndrome), but we were told this was not her problem - it was a problem with the parents.
Asperger’s Syndrome is an autism spectrum disorder. Asperger’s Syndrome is known for significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. Although not required for diagnosis, physical clumsiness and atypical use of language are usually part of the disorder.
Haven worked with the doctor for over 6 hours. Read the rest of this entry »
June 22nd, 2011
On June 20th, we took Haven in to meet with her Endocrine doctor - he was the doctor that saved her life by finding her cancer and diagnosing her with ROHHAD Syndrome. My main concerns have been Haven’s weight to height ratio and the fact that I knew she hadn’t grown much over the past year. I had a few emails back and forth with him over the six months we hadn’t seen him.
Haven has maintained her 80 lbs since January 2009. Her Hi CY treatment for ROHHAD stopped her weight gain and her stealing of food. Immediately following Hi CY, Haven jumped up about 3 inches in height - this was a make up from the year on steroids (which stop growth) - but since that initial jump, Haven hasn’t done much.
So our main discussion with him was regarding her growth and if she is deficient. Growth Hormone Deficiency is a disorder that involves the pituitary gland, which produces growth hormone and other hormones. Growth hormone is necessary for normal growth and development in children. Haven’s last IGF-1 test was done in May while in Oncology. This came back low. Read the rest of this entry »
June 21st, 2011
Haven has done an AMAZING job at her physical therapy. She goes every Monday and Wednesday for one hour. Her therapist is great with her, and Haven has grown really attached to her. Every visit, they decide what color they are going to wear next so they can match. Read the rest of this entry »
