ROHHAD - REAGANN NEEDS LOVE!!!!

HI FRIENDS...Reagann has just had surgery for her PICC line and is doing great. She has an address in isolation room at Hopkins now. This is the same place Haven was in 2009. PLEASE help Reagann keep her spirits up with a card. Please note DO NOT SEND STUFFED ANIMALS OR FLOWERS. They are not allowed on the floor and could make a child seriously sick.

Her address is:

Johns Hopkins children's center

1800 Orleans St.

Reagann Duenne

Bloomberg 11S, Room 7

Baltimore MD 21287

She will be losing her hair (just like Haven) and will need some lovely hats and scarves. One of Haven's favorite things to get in the hospital were puzzles.

Thank you to all my friends for keeping her in your thoughts and prayers.

Another day at doctors

Well I haven't had to say we've been at the doctors much lately.  But I seem to be spending some time in there lately.  Haven has some crazy infection in her toes - back in 2009 we had surgery for this.  We had her CMP checked and everything came back normal.  Oncology called over to the pediatrician with info on Haven.  I did the cliff notes version tonight with him about ROHHAD and Neuroblastoma Cancer.  The medicine he is thinking of putting her on is extremely hard on the liver and she would have to be monitored constantly.  So I'm not really into that.  Haven has done amazing since treatment and doesn't go in to the hospital really anymore.

Her IGG labs came back at 225 this time.  So she will be getting her IVIG on Tuesday.  She has been moved in to a 12 week schedule now instead of an 8 week schedule.  Which is amazing and one step closer to not doing this at all.  At least we can hope.  I talked with the doctors at her previous hospital and they said the reason she is having so many issues with gaining her immune system is due to the many doses of Rituxan not the Hi CY.  We really like the Rituxan when she was doing it.  :)

Anyway, we have a few more doctor appointments to figure out this infection.  I was very happy that her doctor is going to take a few days to research ROHHAD and the medicine he wants to put her on.  We should know more by Tuesday.

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 want to push her to a 12 week schedule instead of every 8 weeks.  We found out that she is still on IVIG due to Rituxan - we thought it was the Hi CY.  We are hopeful she does not have to do this for many more years.  She's tired of going.

We are also getting set up to meet with Endo on a growth hormone stimulation test.  They want to start her on growth hormone shots.  She will also be meeting with Pulmonary soon to schedule a sleep study that is long overdue.

As of now Haven is doing great.  She is finishing up 3rd grade and going to 4th next year.  She has definitely overcome many obstacles and we're so proud of her.  She continues monitoring her own foods and watching her sugar intake.  She keeps to under 20 carbs a day and carries a carb calculator with her everywhere  ---- which can drive you crazy!  :)  So far she is down about 25 pounds and doing amazing.

Catching up on Haven

I feel like I never have time to write in her blog anymore and it's always a catching up thing....with three kids it's a bit harder.  Now that the other two are becoming more independent I think I can start diving back in to this! :)


Here are some photos of our last couple of months:

 Miss Haven with her grandma in Virginia.  She practically moved in with Grandma and Grandpa for about 9 months and had an amazing time learning and growing.  She started a no sugar diet and has lost almost 25 lbs now.

 Haven at the hospital working on crafts while waiting to get her IVIG infusion.

 The hospital staff fell in love with her and decorated her face and took photos for their paper.

All decorated up

As usual Haven does her own blood withdrawals before starting IVIG

I honestly can't remember when Haven had an Easter egg hunt and was able to do anything on Easter.  Thank you to Grandma and Grandpa for taking her out!

 Hanging out in Maryland visiting Grandma and Grandpa there.  We had a great time watching movies and hanging out.

A beautiful smile while getting IVIG treatments in April 2013.  

You can see from this photo that Haven has lost a lot of weight.  She just looks amazing but more important is that she has more energy and is actually sleeping much better.

Miss Rohnin protecting and watching over her sister while the nurse takes her vitals

 And then there are the babies.......this was in April.  They are really growing up.  

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 blessed to have known her and had her in our life.  We will miss her but take comfort knowing she is watching over all of our babies from above.  All our love to her family.

Wild About Reagann

Reagann is the 4 year old daughter of Joe & BJ Duenne of Charleston. She has a very rare disease called ROHHAD Syndrome (Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation).

There are less than 100 children diagnosed in the world. There is no treatment (beyond experimental) or cure for ROHHAD and the source of the disease has not been identified. Symptoms of ROHHAD vary for each child and are usually misdiagnosed. They generally begin with rapid onset obesity in the first 2-4 years of life, followed by impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the use of a ventilator.

Reagann will begin an experimental treatment of high dose chemotherapy (cyclophosamide) on June 7th at Johns Hopkins in Baltimore, MD where her immune system will be destroyed. Her family will live in Baltimore, MD for approximately three months while her immune system is rebooted, hopefully resistant to ROHHAD. This treatment has been performed on two other children in the world, successfully treating several symptoms of ROHHAD

LIKE Reagann on Facebook.....she needs your support!!!

https://www.facebook.com/WildAboutReagann

Desert Dove Tea Room

Check out the Desert Dove Tea Room website in St. George, Utah.  Miss Haven was a featured story.  She had a great time there with her dad on her last trip out for Chemo.

DESERT DOVE TEA ROOM

HAPPY 9TH BIRTHDAY HAVEN!!!

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!!!!

Paria, Utah

 This is one of our favorite exploration areas in Utah.  The city is Paria.  It is a ghost town on the Paria River in Grand Staircase-Escalante National Monument.  It was settled in 1865 and abandoned by 1929.  After that Hollywood came in and made many movies - couple of them - Outlaw Josey Wales and Buffalo Bill.

 The landscape is just amazing to stand in the middle of.

 It's a deep canyon and you can see the many years wearing on the rock.

 My girls strolling through the movie set

Of course Deez had to chime in!

Amazing place if you are ever out there and need some great photos and memories.

REMINDER......

Must remind myself to update the main photo......missing a kid in those pics!!!

Busy.......now back to it

Well - I decided to give myself a break on this little diddy I started writing up over 5 years ago!  WOW......5 years since cancer diagnosis..............and 5 years since ROHHAD diagnosis.

Goodbye 2007 and hello 2013!!!

Miss Haven is doing AMAZING!!!

Little updates:

August she had a round of IVIG and had an IGG level of a little over 100 (normal again is around 1000)

October she had a round of IVIG and had an IGG level of a little over 270

November she had one more round of IVIG and had maintained a level of 590!!!!!!

GO HAVEN!!!

So she has been given a reprieve and does not need chemo again until the end of January!  Which is only about 2 weeks left but it's been a long time.  She will be getting some new doctors and hopefully schedule a sleep study since it's been a year.  Possibly get in to see an Endocrine doctor.  I never hold my breath but I will be getting in touch with some friends soon and collecting doctor names.

Not only is Haven doing amazing with her treatments but she has been doing this amazing diet since the end of October.  Her grandma got her on it.  Since starting she has lost 11 lbs (and to be truthful she hasn't weighed in for 2 weeks).  She is very strict on herself and she knows everything about what she can and can't eat.  I love it.  We are super proud of her.  She has gone down a few sizes in clothes and definitely has more energy.

She has been faithfully attending church over the past few months.  She absolutely loves it plus she enjoys getting dressed up each Sunday.  She reads her bible daily and is just really enjoying it.

Miss Haven will be turning 9 years old in a couple of weeks....I still can't believe I have a 9 year old baby girl!!!




On to the Rohnin

Rohnin is my crazy wild child.  She is always ready to go.  She is amazing to see everything through her eyes.  She is definitely following her sister with the electronics but Miss Rohnin is the active one.  She should be in gymnastics soon.  She has already tried to skateboard her wagon through the house many times.  Reminding her grandma of her uncle out in Hawaii.  She is always climbing or doing something nutty.  A few more months and she will be turning 2 years old.  Which is also crazy.

My baby boy Weston

Oh he's spoiled.  He's almost 7 months but he holds his own against his two sisters.  Especially Rohnin.  They are already best friends but ready to fight as well.  He is already crawling and he LOVES his food.  At 6 months he was 25 lbs.  He now has 6 teeth and he's a big big boy.