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.
First, we want to thank EVERYONE that sent Haven box tops for school! She was able to take in 129 box tops - which put her class in first place, WINNING the Box Tops trophy for the month of April. Her teacher was named Box Top Princess and given a tiara to wear. Total for her class was around 720, and the next class was in the 500’s! Haven’s really pushed them ahead.
BUT we have one more month - well I guess 1/2 month at this point - to get MORE Box Tops!
The box tops for Haven’s school are going to build them a new playground - which they desperately need. Right now, the kids have to play on the blacktop or back parking lot as the current playground has peeling paint and is in really poor condition.
You can send box tops to:
939-I Beards Hill Road #104
Aberdeen, MD 21001
A few weeks ago (April 24), Miss Haven had to go in to Oncology just for lab work. We are back to doing her IVIG every 8 weeks and labs every 4 weeks. We’re trying to see if we can push it out again and see if her immune system has kicked in. She heads back in to Oncology on May 23rd for IVIG.
On May 11th, Haven also began physical therapy. Read the rest of this entry »
We have been busy trying out different recipes and many of them work out but there are many that don’t! Some reason we can make lasagna…..but we can’t make muffins!
These muffins were found in a magazine for the Royal Wedding as Prince William’s favorite breakfast muffins. We have attempted to make these two times now….the dough does not cook….but they look beautiful!
Read the rest of this entry »
Well as many of you know we have been OVERLOADED and busy……I’m so happy it’s spring finally. Other than all the ticks - which I can’t understand why it’s so bad this year - we’re enjoying the outdoors. My only issue is the ticks - we live in critter country!
We found a new park to play in over in Elk Neck forest. Deez had a blast running through the woods and playing. She loves to just run. She is great at staying close to us though, and when we call her, she is right back at our heels.
Read the rest of this entry »
WE NEED BOX TOPS!!!! Haven’s school desperately needs a new playground!!!! Please help….
You can check this web site - HERE - for a list of products you will find the above logo on for the Box Tops….cut them out and send them our way! Please help…..she only has until April 25th to get them turned in!!!
Thank you to all of our friends out there that donated to Johns Hopkins during the fundraiser. Haven won 4 passes to Six Flags and we couldn’t have done it without you. We’re looking forward to taking her during her spring break!
A note from Hopkins to all of those that joined their own mission to raise money:
Thank you for participating as an ambassador in this year’s Johns Hopkins Children’s Center Caring for Kids Campaign.
You reached out to your family, friends, coworkers, classmates, local corporations, and community organizations for donations—and on behalf of our young patients, families, and staff, we sincerely appreciate your efforts! We have raised over $5,300, and counting!
The Caring for Kids website will still continue to accept registrations and donations until we begin our 2012 campaign. Please continue to reach for your fundraising goal!
Each year we strive to raise funds that will allow us to sustain and develop programs and services for our patients and families when the need arises. Here, families in dire straits know they can count on us to care for their child no matter what. Thanks to the support of individuals like you, our wonderful doctors and medical staff are still able to keep the doors open to every child and family who walks through them, regardless of their ability to pay, while providing the world-class pediatric care for which we are renowned.
Your generosity is what makes Hopkins Children’s unique and a very special place for children to heal.
A clear sign that spring is here!!! Big wolf spiders invading! This was at my front door tonight. I haven’t seen one this big in about 2 1/2 years…..the last time I saw one it was in Haven’s bed at the foot. Yes — horrible! She slept in our room for about 6 months after that.
We’ve also had some crazy weather around here - which I know other parts of the country are getting hit with the same thing! The past few days have been so cold (50’s or so) and very windy and then today hit 80 degrees and tomorrow is supposed to be back down to 60 degrees. Should bring around a good bout of storms! So I’m very excited about that. We had to break down tonight and turn the air on….not ready for the 100 degree days coming soon.
Haven has been doing great. She was supposed to go in to Endo today but we had something come up that she couldn’t get in. I have rescheduled her appointment. I really want to get the bone age x-ray done to check her growth. She has a big test tomorrow in math so she went to bed early tonight and wants to have double the blueberries tomorrow - as she read that blueberries make you the smartest kid in class. She requires them every morning for breakfast. Read the rest of this entry »
Well we’ve been laying low for a while now….sorry. I’ve just been tired and working and Haven has been doing awesome. She is amazingly reading chapter books now and we bought her a Diary of a Wimpy Kid book….so far she is doing great reading it and loves it. So she is looking at other chapter books and picked up Silverlicious at the school book fair. I never knew I’d have a kid that loves to read so much….considering I’ll wait for the Silverlicious movie before reading the book. She gets that from her dad!
She got a cute package from her friend Shirley - which had a cute little kitten in it. As you can see above. Read the rest of this entry »
WOW!!! We got our card from Hopkins thanking us for being part of the 2011 Radiothon. We’re so happy to be able to do this. We’ve met so many families being part of the Johns Hopkins family for almost 4 years.
You can check out all the 2011 kids - HERE.
Thank you to every one that donated, especially our Haven readers. Total Radiothon dollars raised this year was $850,000. WAY COOL!!!!!
Just in case you don’t have time to click the link above and read about the Radiothon and how much it made, I thought I’d share a snipit from Hopkins web site:
With support from the Children’s Miracle Network (CMN), the MIX 106.5 Radiothon has raised more than $13.1 million since 1989 for Hopkins Children’s, with a record $1.1 million raised in 2008. Hopkins Children’s is a member of CMN, an organization dedicated to helping raise funds and awareness for 170 children’s hospitals throughout North America.
Your donations are much appreciated!!!
While the world keeps turning out there in ROHHAD developments we have stayed on the quieter side lately. We know approximately 38 families now with a child with ROHHAD - ranging from early 20’s to 3 years old. All very similar yet different symptoms. It’s interesting to learn about each child because we are all hit with varying symptoms at different ages and stages.
We are heading back in to Oncology next week for another round of IVIG and then we are back in with Endocrine after that. I’m not sure where Haven’s counts are at this point - I know we tried to extend her IVIG visits from every 6 weeks to every 12 weeks and that didn’t work out very well. So we are still on the every 6 weeks schedule. There are two other important topics we are bringing to discuss - Haven’s height/growth issues and finally breaking down to go in to meet with Kennedy Krieger Institute. They are internationally known and well respected in the medical community. We just never had the mental capacity to add more to our schedule when we were first asked to start going over 2 years ago. It’s a lot of work to get an appointment and we should definitely take advantage of our doctors being able to get Haven in there.
Other than that Haven is doing well. She has excellent grades at school and is a good little helper. Her only issue is that she likes to be the boss…..we are working on that! She is still doing her adaptive PE class to help with balance, core, and strength. She is learning to go up the stairs with both legs instead of just the right leg. We still have lots of issues with that, as well as, fear of getting in to a car. I know……..it gives me a headache every time we have to get in a vehicle. Read the rest of this entry »