ROHHAD / Neuroblastoma Treatment Plan

We have been waiting about 2 weeks to find out what Haven's treatment plan will be for 2009. We were certain it would be an elevated and more frequent dose of Rituximab but this is not the case. I spoke with Haven's doctor on Tuesday and we are starting her first dose of chemo tonight at 8pm. It took 24 hours to get the medicine made and ready for us.

Haven will be on this plan for probably a year but can be longer if necessary. During this time I will keep a journal of everything happening with Haven. This includes her eating pattern, her food requests, her pottying, number of diapers used in a 24 hour period, her temperment, her sleep/non-sleep patterns. Any little changes we notice will be documented.

Just a reminder THIS IS NOT A GUARANTEE that it will even do anything. We have no cure for ROHHAD so we're hoping to see some changes or we know it's just not working.

Rather than go in to all the side effects and details of the medicine I will just let you know it's generally the same as all other chemos: breathing problems, kidney issues, high blood pressure, etc etc. So we will also be keeping close eye on her.

Her schedule will consist of:

• 2 doses of chemo every day at exactly 12 hours apart - 8:00am and 8:00pm
• mix with shot glass of whole milk (I wasn't excited about the whole milk part) at room temperature
• 2 times a week Haven will go to JH for blood work by 8:00am. Her chemo will be brought with her to take immediately after the blood work.

Why are we doing blood work 2 x a week. This medication has the possibility of throwing her "levels" out of whack all over the place. So they need to keep track of it closely.

So going in to 2009 - we are thankful to still be bossed our by our little princess and we are trying to look at the positives as 2008 was filled with so many negatives. This is going to be a VERY hard year. Kris will be taking Haven to 95% of her doctor appointments as I have to work and we'll need to keep on each other to give her the chemo at exactly the same time every day at 12 hour intervals! We're buying an alarm clock tomorrow that will be the "Chemo Clock".

OH - We find out on Friday if she is making Cortisol! I SUPER DUPER hope so!

Merry Christmas and Happy New Year

We hope every had a nice Christmas and is safe for the New Year! We're working on our resolutions for 2009. Here are a few pictures of Haven from Christmas. This one is from Grandma and Grandpa's house on Christmas Eve. I had to run out and get her a Christmas sweater....she couldn't be out of fashion for the occassion. :)

I just love this picture!!!! She looks so sweet and innocent! :)

Dad and Haven opening her gifts! She's not "allowed" to have Bratz dolls but of course grandparents are an exception! She got a Brats doll hair coloring kit! She can color her own hair with it. Should be fun this weekend!!

This is Haven opening the gifts from all her friends around the world. It was awesome! We didn't let her open any of the packages until Christmas Eve.

All the rest are on her FLICKR site. There are a few cute videos of her on the Wii. She got a new game from her grandparents in Utah and just loves it. However, after 4 hours of straight playing she looked at me and said - "Mom, this seems more like exercise than a game!" Hhhhhmmm.....really? I wonder if that's why Mom and Dad bought the Wii!

Love to all

ROHHAD and NEUROBLASTOMA Update on Haven

Currently - I just wanted to update everyone on what we're doing and what we're waiting for.

Through the holiday break we have slowly been decreasing Haven's dose of steroids and will end on January 1st. On January 2nd at 8:00 am we will have blood taken at JH to check Haven's Cortisol levels. I am hoping she is producing Coritsol on her own and we won't need the steroids.

January 13th - Haven will go in for Chemo and meet with her doctor to discuss the future treatment plans. We are waiting to hear if we will go back on Rituximub (chemo) for another 6 months.

January 15th - Meet with Pulmonology at 8:30am to evaluate Haven's breathing - really I don't know what they do. This will be the first time we've seen Pulmonology since our initial 10 day hospital stay in October 2007.

Setting up an appointment with Audiology - WHY? Josh lost his hearing after being diagnosed with ROHHAD. So since we know very little about this syndrome we are getting an initial marker on Haven's hearing and will be able to watch if it starts to decline.

Still waiting from Haven's eye doctor - I've called 3 times and haven't heard back. I'll call again after the holidays. Now that she is going to be getting more chemo I'm not sure if it's the right time for surgery. Haven's doctors will have to tell me on Friday.

Christmas photos are coming! I have so many projects in the works right now I barely have time to do anything!

OH - had some CRAZY doctor dreams over the break. I remember one very clearly.
-- Haven was in a lab room (all white of course) with lots of doctors. They frantically tell me that Haven now has Hypoxia. I was upset (although when I woke up I didn't know why) and I kept asking them how do they know. They kept telling me "it's on the list". I was crazily searching for the list and they had it on the white board and were check marking Haven's symptoms - just going down the list. They kept telling me to look at the list over and over. --

I woke up and searched for my list. Hypoxia is NOT on the list. I was't even sure if it was a word or medical term. BUT it is!

HYPOXIA: is a pathological condition in which the body as a whole (generalized hypoxia) or region of the body (tissue hypoxia) is deprived of adequate oxygen supply.

Haven does NOT have Hypoxia! Whew! :)

Angels for Haven

I received an email from someone last week. She had read Haven's story and was touched by how brave and strong our little girl is. She asked if she could post Haven's story on her site and donate a portion of the sales to Haven.






These are beautiful handmade pieces and we're extremely thankful that someone would take proceeds from their labor and donate it to Haven. Please check out her site and thank her for all her help.

CLICK HERE TO SEE HER SITE ---- I also have a banner to the side of the blog that you can click on anytime.

Chemo Duck and the ASCEND Foundation

Haven received the cutest little duck from the ASCEND Foundation. His name is Gabe Chemo Duck.

About Chemo Duck

Chemo Duck is a multi-purpose stuffed animal. He is a 12” stuffed Duck who comes dressed in hospital pajamas and a bandana wrapped around his head. Safely secured on his chest is a bandage with either a central line or a port (the vehicle used to take chemotherapy directly in the blood stream). On his arm he wears an arm immobilizer sometimes called a “No-No”. The arm immobilizer protects peripheral IVs, and discourages children from bending the arm to pull at bandages etc.

I received this note this morning and wanted to share!

NOTE:

Dear friends,

We are so glad that Haven enjoys her Chemo Duck! Gabe and I hope he brings her much joy and comfort!Gabe's Chemo Duck program has now returned to Gabe's My Heart in Nashville TN, while we are still close to the ASCEND foundation and their endevours they are now developing an educational project of their very own. Thank you for your wonderful comments and support of Gabe's Chemo Duck.

Love,

Lu and Gabe Sipos

http://www.chemoduck.org/

Haven's FLICKR site

Well I used to use Shutterfly for all of Haven's photos but it's too hard to share. I have to send you a link to have you view it. I still use Shutterfly but more for personal stuff. So I have created a FLICKR account for Miss Haven. I have a lot of photos to transfer over but there are MANY in there.

If I put the photos up that I take this site would be overloaded. I taked hundreds of photos and videos all the time. There will be a "set" for Haven's videos on FLICKR. I will separate them as "Awake" and "Asleep". Some of the things she does during both times are HILARIOUS. I'm trying to get this little dance she does on video.

Anyway, Have a look. I will put a few Christmas photos up here and then all others will be in her photo site!

:)

CLICK FOR HAVEN'S PHOTOS

ROHHAD comparisons

I'm doing a little "thing" I'll tell everyone about soon. Well, once we're up and ready with it. But Julie sent a couple photos to me over the break of Mason. These are Mason before and after ROHHAD.

Soon you will see what I'm working on. My only hope is that it actually starts to help people, doctors, moms, dads, and children with ROHHAD.

Before ROHHAD

After ROHHAD

ROHHAD updates

First let me explain why I would call it ROHHAD updates instead of just updates. Yahoo and Google propogate the web site by the title you list in the blog post. Therefore having a generic title will not help the world learn about ROHHAD. You will also notice that ROHHAD is in almost every post label even if it is not about ROHHAD on that particular day! So with that said - here are a few updates on Miss Haven and all her friends.

Haven: She has had a cough that we've been watching for the past few days. She has not really been sleeping at night. Friday she was up until 1am and then had a horrible sleep walking experience around 3am and then was back up at 5am on Saturday morning.

Saturday was stressful for us as she slept. She was breathing very heavily and snoring a lot. I have a big humidifier in her room but it wasn't helping. We took shifts checking on her every hour in the night. At 2am I found her in the bathroom. She was sleep walking and had fallen. I got her back to her room and back in bed.

Sunday was even more stressful. She was breathing too quiet and very smooth. Why is this stressful? Because it's not normal and we're not used to it. We're used to loud breathing. So since I couldn't hear her breathing on the monitor we were checking on her even more!

Monday night she was very clingy and needy and her dad slept with her. She usually picks one of us to be the favorite for the day and Monday was dad's turn. So I am up writing!

Mason: Mason is doing well. We received some cute photos of him and his sister the other day! Mason will be traveling to Chicago to meet with Dr. Weese-Mayer on January 12th. We're all excited for his visit. I keep in close contact with his mom, Julie!

Josh: Josh is in Houston for a few tests and MRI's. We're hoping he's back home by Christmas. Please check out Josh's site for his updates. We'll be checking in with Vanessa while he's going through his testing.

Sophia: Sophia was scheduled to do a sleep study this past Sunday but the snow in the north has pushed her appointment out. She met with Pulmonology and concluded that Sophia does not have asthma. She will do her sleep study immediately after Christmas and will have a CT scan of her abdomen (due to severe pains in the abdomen and back) and then will go on to full MRI.

Karen: Karen is anxiously awaiting the arrival of her daughter Nikki. She will be home for Christmas lunch and then will head back to the hospital. We're hoping Nikki will be released from the hospital soon to be in her house with her family.

New Person: I found a new person yesterday who's daughter is 8 years old and was diagnosed with ROHHAD in January 2008. I have emailed and even had some help translating the Spanish and writing a note back in Spanish! Thank you to my friends in South America! I hope to hear from her soon and will let everyone else know about her.

WE WISH EVERYONE A MERRY CHRISTMAS!

We'll be around if you need us. Love to all!
M

NORD Invites You to be a Rare Disease Day Partner

Help by signing up and encouraging others!

The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. On that day—and in the weeks leading up to it—we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments.

We invite all patient organizations, companies, medical societies, government agencies, and others with an interest in rare diseases and orphan products to join us in this global effort. You can do this by writing to rarediseaseday@rarediseases.org and signing up as a Rare Disease Day Partner.

Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892–7518
Telephone: (301) 402–4336
Fax: (301) 480–9655

ord@od.nih.gov

Johns Hopkins Riverside Christmas Party

WELL!!!! Remember a few months ago when I mentioned that JH Riverside wanted to adopt Haven for Christmas. Well they worked and worked on her Christmas Party and they OVERDID themselves!

We showed up at 5:00pm for what we thought would be a small gathering of the nurses and doctors with a couple gifts for Haven. WE WERE SURPRISED!!!

We had made plans to take Haven to Disney World for the first time ever last Summer but then she got really sick and we found out she has Cancer and we had to cancel our trip. Instead Haven has endured a year of doctors and tests and chemo. My ultimate wish ever was to take her to Disney and meet all the princess that she loves so much!

Johns Hopkins Riverside made that dream come true!!! Haven is going to Disney at the end of January. They raised enough money and gave us a fully paid package to Disney with flights, hotel, food, and more!!!! She is beyond excited. We have been looking up all the parks and everything. We're making sure she sees Magic Kingdom, Epcot, and MGM. Her sister Kendall is also going to fly out from California to be with us making it a complete family package!!!
I can't thank everyone enough for the donations to Haven and for the Disney World package. We have a gift planned for the office when we come back. Here are a few photos from the party. Haven has lived out of her "toy" basket every day since. I find it in her bed every morning!

THANK YOU

Christmas: A Time Of Giving

I can't say THANK YOU enough to everyone in the world that has sent cards, letters, pictures, gifts and well wishes to Haven. This has really renewed my belief in people and in the holiday. So much can be forgotten during the normal day of a normal life. To think a few people would stop in there day to send a note to my daughter was awesome but I NEVER thought the response would be so huge! We are overwhelmed with the love she has received from so many we have never met and from those close to us. I want to thank everyone - but cards will take too long - cards are coming though!!!

Long and Foster of Aberdeen - for the donation to Haven

Comer Construction - for the donation to Haven

Harford County Contractors Association - for the donation to Haven

Mary Jederberg - Handmade a doll for Haven in which she named Snow White

Aleah Scheick - Miss Alaska 2005 - for an overabundance of gifts to our little girl

Grandma Sing and Grandpa Beard Off - for LAUREN!!! We couldn't do it without Lauren

LAUREN - for loving our daughter as much as you do!

Omma and Dad - For always being there and helping with Haven!

Mom and Simon - for coming out and cooking with Haven for a week! :)

Brad and Terry Jones for the beautiful Angel bear and Angel to hang on Haven's wall

Byrom Family for the donation to Haven

Mason Byrom for the beautiful note and pictures of him and his beautiful sister

Barber Family - for the Christmas gift (under the tree!)

Shirley Anderson - for an entire year of gifts and notes and for the glowing flower

Ely Family - for the donation to Haven

Jean Gauthier- for the donation to Haven

Evelyn Johnson - for the handmade story book!

Trish Fiebing at TCAPS (Traverse City Area Schools) in Michigan for the school workbooks!

St. Janes School - 200+ names signed a Prayer List for Haven

Aunt Emmy (Emily) for the beautiful tattoos and Christmas gift (under the tree!)

Andrea Seidel - from making the custom pants for Haven!!!!!

Dana Day and Family - for the gift and Christmas stocking to Haven

Gnesda Family - for the Christmas gift! :)

UNDER ARMOUR - for more than I could ever EVER imagine! All the gifts and donations!

McKenna Grossi - for the doggie (Charlie) and his house!

TO THE MANY MANY CARDS Haven has received in the past few weeks:

Dency Cilona

Vicki Kupec - we love all the postcards from different places

Shirley Murdock

Shirley Anderson
Matt's Helpers

Casey Cares Foundation

Anne Bonney

Joan Bonney

United Airlines Flight Attendants EVERYWHERE!

Shannon Clarke

Andrea Cilona

Delaney family

Aunt Dottie

Great Grandma Bateman

Aunt Candy

Aunt Jill and Uncle John

Great Grandma Bist

Johns Hopkins Riverside - all the gifts - MY Swedish Massage and Kris' Barnes and Noble Card

Paula Dean!!!!

Stephanie and Jason Johnson

Mason Byrom

The Brydges Family

Briggs Kirkland - for the card and Christmas Countdown!!!

Harford Health Services

Sandra Trader

TJ, Mac, and Maggie Haley

Margaret Wallace - ALL THE POSTCARDS ARE AWESOME

Amy Hearn/Jaime Griffon

Sean and Jill Trego

Lori Pometo

Kristen and Phil Barton

Grice Family

Pat Turiff

I know there are SO MANY more....

WIKIPEDIA: ROHHAD

Well if you type ROHHAD in to Google or Yahoo you most likely will not find much. There are a few articles and you will find information on Josh Wooten and possibly find Haven's blog site. Well, I work nightly and constantly on changing that and getting as much info out there as I can. So currently I'm working on a Wikipedia definition of ROHHAD. I'm learning as I go - since I've never done it before but it seems to be coming along great!

ROHHAD and NEUROBLASTOMA CANCER

So we spent pretty much all of yesterday at Johns Hopkins. We had a great visit with both of Haven's Oncologists. We had a lot of questions and we received a lot of answers. I will have to post an update probably next week sometime when we have a more clear picture of the immediate future for Haven. Here is what I do know:

1. She is very tricky and very complex - ROHHAD and Cancer mix
2. Chicago doesn't have a "treatment" or really a test as no one really knows about this syndrome
3. Her Oncologists have a plan of attack however, they will meet with the conference again next Tuesday to confirm this is the way they want to go and then will get our approval. Once we approve I will let everyone know what they are doing.
4. We are still waiting on the sleep study results!!!!!! It's now Day 10!

Something we are doing right now - which we hope will show us a good sign. Haven will be off the steroids by January 1st. We are weening her off starting yesterday. I will take her in to the hospital on the 2nd for an 8:00 am Cortisol test. If her body starts making Cortisol on it's own we will be HAPPY - if it doesn't then we will go back on steroids.

I want to say one thing that made me VERY happy. Yesterday we met with the social worker at the hospital as well to review anything that we need and to discuss assistance with Haven. As we all know - unless you live with a ROHHAD child you really don't understand what the heck we're talking about half the time! :) Not a bad thing it's just the way it is. The SW, Lisa, came in to the room AFTER reading about Haven and studying ROHHAD. She even read Haven's blog. I was very happy about that. It seems like most people come in and don't check on her before hand and ask questions that we really feel they should know already. THANK YOU LISA!!!

Oh - Thank you to the Ped. Oncology and Nurse Katie for Haven's Christmas present! Of course, anything about the Princesses is a favorite!

Making Cookies

So the last couple of weeks I have been talking with Julie (Mason's Mom) and comparing our children with what they like to do. It's amazing but we are finding out just how extremely similar Haven and Mason are. Both love the cooking channel, both love to cook, both love to do crafts and create things and both are very much like adults. We've been discussing school and when we feel is the best time for our children to progress in to that world. We've talked about medicines and treatments and Mason's trach. I'm terrified of all of this and Julie has really been a major help to me - mentally.

I wanted to share with you a picture of Mason making some cookies with his mom last weekend!

He just looks like he had the best time - the messier the better!!!! That's awesome Mason!!!!

THANK YOU!

We have so many to thank for all your love and support of Haven. Sometimes it takes us a bit of time to get cards sent out - as Haven likes to do them and she gets exhausted pretty easy. But we truly appreciate everyone.

Byrom Family - Mason's Mom - THANK YOU so much for the donation to Haven. We are so very appreciative and we can't wait to meet you some day!

Pamela Krausman - Thank you so much for the donation to Haven. It truly is amazing as you have never met my daughter either yet care so much to give to her. Again thank you.

Esther and Emma - We have never met either of them and they sent Haven a beautiful Christmas card of their family and Emma drew a beautiful picture for Haven.

Eva Chan - Wow. We missed you girl! This is Haven's pen pal from Utah. She wrote Haven a lot but then was gone. We received a letter that Miss Eva was in Japan for a while. She sent Haven a beautiful letter and postcard from Japan! Welcome back home.

Shirley Anderson - someday you will have to meet my baby. You send her something about every week. We truly appreciate your love for her.

My favorite nurses at JH - Dana, Dawn, and Peggy - can't wait to see you guys this week!!! Love you!

Aleah Sheick for the amazing care package for Haven!

EVERYONE that has sent her cards and notes over the past few weeks. It is amazing. We've received cards from people we've never met and people I have never talked to. I am overwhelmed at how much people care for a child they have never met.

Baltimore Ravens Tommy Z

Tom Zbikowski, or Tommy Z found out about our beautiful Haven from Emily Ries at Under Armour and he sent Haven a autographed photo of him and told her he hoped to see her at a game some day! She was so excited....not that she knows what football is but because Raven rhymes with Haven and Grandma B-Honey loves the Ravens more than anything.

Thank you so much - she can't wait to frame it and put it up on her wall!!!

Sports Marketing Dept at Under Armour

A huge thank you to the Sports Marketing Department at Under Armour. They worked on this pretty hard as you can see. It's a huge card with stories and pictures from everyone in the department. Haven was freaking out.

She also received a beautifully wrapped Christmas present from the group - however - we decided to put it under the tree and wait for Christmas.

Thank you - Ted Gladue, Tori Hanna, Jason Parker, Patty Rawlick, Emily Ries, Jeff Locklear, Emily Sammis, Anne Bonney (not the pirate), Casey Connor, Jamie Norwood, Elise Conway, Ryan McDermond, Jackie, Kevin Culley, Emily Hammer, Walker Jones, Shea Maddox, Shawn Flynn, Claudia Farace, Ed Tomlin, and Allie Kupec.

We are totally amazed at the work you put in to this card. The photos and stories are awesome.

Haven becomes Paula Dean with Grandma

Haven and Grandma looking up recipies on the computer to modify the cookies

Grandma Virginia came out to spend the week with Haven and bake for Christmas. All recipies are "Dad" approved - meaning they are mega low sodium and mega low in sugar. He has created his own recipie book for Haven over the past year. They modify a lot of what they see on the cooking channel. Haven's favorite cooking shows are Paula Dean and Rachel Ray. She watches the cooking channel all the time.

Here are a few photos of them cooking

Whipping up the cookie dough

Getting ready to scoop it out! Check it out - they have matching aprons. Grandma's says: Cookie Maker and Haven's says: Cookie Taster

Thank You Under Armour

Well about 2 weeks ago Under Armour came to me and asked me about Haven and if they could do a little write up for the internal company site to share Haven's story. I am so thankful for Under Armour and all the support they have given to our family. Since publishing the story about Miss Haven she has received quite a few cards and just loves it. The mailman is really working for her this year. Many of the people we don't know but the love they show to our daughter is amazing. Everyone asks about her all the time and constantly let me know they are thinking of her. Keep 'em coming! :)

I also want to thank the Moffatt family for their donation to Haven through the donation button her blog. It is truley appreciated.

THANK YOU ~ THANK YOU ~ THANK YOU ~ THANK YOU

Sleep Study

Starting the wiring process


All wired up and ready to sleep.

So we did the sleep study on Saturday. I drove them up there and stayed until about 11pm. I was a bit concerned about the snow, which just happened to start right before we left to go to the hospital. Then I received a few texts that Haven kept waking up when the tech would come in the room. She did finally fall asleep around 2am until 5:30am when I arrived to pick them up.

She did a few of her screams (but not major ones like at home) and there were quite a few choking instances and then she'd half wake up and go back to sleep. Kris said this happened quite a bit in the 3 1/2 hours she slept. One was so bad he was beside her bed before he even realized where he was. He said the tech was a bit shocked at how fast he was there.

We finally got home around 7am and everyone passed out until around 10:30am. Haven was really wired up that night (with wires not caffeine) and I'm not sure if one of them bothered her port or not but around 12pm Sunday she was complaining of "crunchies" in her chest at the port site. Crunchies usually mean she's going to be sick but she kept saying her chest was crunchy and hurting a lot. We did a few slow breathing exercises and I decided to stretch her out - as it usually helps me. The loudest pop came from her chest and all of the sudden her breathing was much better. She was still in pain but I had her lay on her back to open her chest and we did more slow breathing. She was asleep in 5 minutes. She slept for 4 hours. I was amazed. Woke up and no more pain.

We are waiting the results of this sleep study. I have a feeling this one will be more important and show more than the last.

Updates

Well....Haven has had some issues with her back and this morning at the crack of dawn was a panic wake up and jump in the car to Johns Hopkins. We got in and met with two doctors who throughly examined Haven's back and spine. The big concern was a possible fracture in the vertebrate due to all of her medication, steroids, lack of vitamins, and no milk for a year. Why no milk - we limit sodium due to steroids.

After multiple CT Scans and HOURS and HOURS at the hospital - seriously we didn't get home until dinner time - Haven's spine is fine. There is no sign of a fracture or displaced disc. So it seems as though we just need to watch her during activity and make sure she doesn't bounce a lot.

While at the hospital we received many calls from all different doctors.

Sleep study is now scheduled for tomorrow night. I have to have Haven at Mt. Washington by 8pm and then pick her up at 5:30am on Sunday morning. She wants her dad to stay with her so I will stay until she is completely hooked up to the machines. Probably get home around 11pm.

Haven's eye doctor called to schedule her eye surgery. We still need to discuss this. I told the doctors I didn't want any surgeries before the holidays and then with Haven's birthday only being a few weeks after Christmas I really don't want to do it then. But really when is there a good time.

A few appointments

We've got a busy month - not including Christmas and preparing for Haven's 5th birthday party. Which she has already been informing us of how we should decorate and what we should cook.

Dec.- Meeting to have her back examined and X-rays of the lower back (see post below)

Dec. - Flushing of port and lots o'lots of blood work - Meeting with Oncology doctors to review everything

Dec.- Meeting with Dr. Cooper to review everything and at closing JH Riverside is having a Christmas gathering for Haven. They have been working hard on a special Christmas for Haven. We saw the posters and Haven's pictures all over the doctor's office.

On Call for Sleep Study. They could call at anytime with a 1 hour notice for Haven to go in for her 24 hour testing.

Pulmonology - I just scheduled this to check for results of her Sleep Apnea, Hypoventilation testing, and examine for ROHHAD-NET.

Scary night

Well.....today was a Lauren day...so Haven was exhausted and sound asleep by the time I got home around 6pm. She slept until 7pm when I woke her up to have some dinner. All a normal night until she decided she was gonna have a spurt of energy. She never plays so when she does we feel like she's a newborn learning to walk. I had the video going of her wrestling around with dad and then she started jumping all excitedly. Not even 20 seconds of jumping and she just fell to the floor. She couldn't move and she was just grunting.

We were next to her in a milisecond but it felt like forever. We got her up after a few minutes and had her lay across the chair. Her back was hurting her. It had to hurt pretty bad as Haven doesn't really feel pain due to her condition. She really doesn't know pain like a normal person so I knew it was bad.

I rubbed her back for a long time and dad kept talking to her to make sure she was ok. She couldn't stand up for a few minutes so we kept her stretched over the chair. After a while of rubbing she was able to stand up and walk. I got her in to bed and made sure she had a lot of pillows around her. Dad stayed with her for a while.

I talked with Vanessa about it and she mentioned that her son Josh used to have the same issues. She used to use a lot of pedialyte. Which I have read that electrolytes and dehydration are a major issue with ROHHAD. So we will be stocking up and loading the baby girl up.

Thanks for the tip Vanessa - it is really awesome having someone to talk to about this and who is very well experienced in what should be done. :)

ROHHAD CHILDREN

Below is a cross reference post from Vanessa Wooten's blog site - I really hope you have had a chance to visit it and continue to check on Josh and their family. I am very thankful to have found her and hope to find more mom's out there!

Josh at the Special Olympics

I would like to introduce everyone that reads this blog to Joshua Wooten. He was diagnosed with ROHHAD in 2005. The Discovery Channel did a documentary on Josh and you can see it at Vanessa's blog site. Hopefully I will be able to visit Vanessa and her family some day and to meet Josh. Josh became the poster child for the disorder after the Discovery Channel - I would love for the Discovery Channel to replay this so more people can see it.

Josh takes 1st place - CONGRATULATIONS!

Josh's ventilation system that keeps him breathing

I have contacted his mother Vanessa Wooten and am able to talk with her. Where did I find her - FACEBOOK! I am finding that this site has connected me with more people than I could imagine. The Wooten family lives in Texas.

Other Children of ROHHAD - please see Vanessa's site for more info on these other children.

Leigh Ann W. of Kentucky. She was born April 1990. She began having symptoms at about age 2. Leigh Ann passed away of complications in February 1998 (at 7 years 10 months of age).

Jenna S. of Connecticut, who is now 6. Jenna seemed fine until she suffered a seizure at age 3. She was officially diagnosed at age 4. A major (2 and a half hour) seizure in June 2007 set her back by affecting her mobility and speech. (I did read about this is Dr. Weese-Mayer's report - but not name or location).

Scott C. of Illinois was diagnosed in 2002 at the age of 4. He is now 10 and currently still sees Dr. Debra Weese-Mayer. I am in contact with his mom.

Mason B. of St. Louis, Missouri - he was 3 years old when diagnosed. He was just diagnosed with ROHHAD and doctors decided to place a trach.

This is Mason B!

Nikki B. from Australia, was just diagnosed at age 7, but doctors there were keeping her in the hospital. In fact, at last report, Nikki is still in the hospital (for more than 12 weeks now).

This is Nikki B!

I am finding it comforting talking to these other mom's as they have already gone through what I will surely go through and what other mom's will go through. The more of us that talk about it will bring more attention to this rare disease. We should create our own organization as it seems there isn't anything out there on this.

This syndrome is scary because no one knows about it and usually by the time you know you have it then it could be too late. I have no idea what the doctors are planning but we have to decide if we're going to Chicago or not. I have sent Haven's detailed spreadsheet below to all of her doctors and the doctors in Chicago who have placed it with her records.

I also contacted NORD - National Organization for Rare Diseases as recommended by Haven's pediatrician. This disease is so RARE that they don't even know about it. They asked me to go back to my doctor and check the spelling. So I sent them all related articles, my blog site, and Haven's article from her Endocrinologist. Now I know they know about it.

Ok.....on to the next battle of the day and more doctors to drive crazy! Even if Dr. Badgett says I'm not driving him crazy I plan to! :)

Children's Memorial ROHHAD vs. HAVEN

Below is a chart I have made comparing Haven to the 15 patients with ROHHAD done by Dr. Weese-Mayer in Chicago. Note: There are a few areas of concern that I have that were not measured or noted by Dr. Weese-Mayer.

1. Sleep talking
2. Sleep walking
3. Hypertension
4. Voice Modulation
5. Gastroesophogeal Reflux
6. Massive muscle lump growth on the back






CLICK THE CHARTS TO SEE COMPARISONS

ROHHAD or ROHHADNET

Well this would depend on who or what side of the globe you are talking about. I have been doing hours and hours of research this weekend. I've had 2 lap tops in front of me almost all weekend! I have a lot of stuff to share and I have made comparison spreadsheets, charts and I have my very own dictionary of medical terms often used with discussing ROHHAD.

What is ROHHAD? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood

What is ROHHADNET? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Presenting in Childhood

It seems as though, from my readings, that Europe is proposing to add "NET" on the end for those cases who have Neural Tumors. If this were made official - this is the syndrome Haven would be officially documented as having. USA is rejecting the addition of "NET" as they believe the acronym is already long enough and the neural tumor is almost always assumed.

I will share a comparison of Haven vs. 15 ROHHAD patients from Chicago. It shows what symptoms they have vs what Haven has. It also compares the age of these 15 when symptoms occurred and as we know I have been trying to figure out what has been going on with Haven since age 2 years and 4 months.

PS: It's about to get techy!

From Miss Haven

This was Haven heading to Grandpa B-Honey's house last weekend. Grandma B-Honey finally came home from a 3 month vacation in Korea so I made a big breakfast for everyone!

FROM HAVEN:

Haven wants to thank everyone for all of her gifts and cards.

Great Grandma and Candy sent Haven a $25 card to WalMart - which she'll happily get Space Chimps today! :)

Great Grandma Bist sent Haven $50 which is going in to her bank account

Miss Dawn and the girls sent Haven these cool bead things that you create a design with and then iron them! She spents hours on this - absolutely loved it. I'll get photos for you. Thank you

Aunt Dottie's friend is making custom pants for Haven for the winter! We've already started protos. THANK YOU

Shirley Anderson sent Haven a cute puppy that barks. Her name is Rosie! thank you

Baby Stryder brought Haven some "baby" clothes for all her babies. It was a cute Tinkerbell outfit.

Of course, thank you to Dad and Jeannie for making sure Lauren is always here for Haven. She is definitely missing her this week but I guess we have to let Lauren go on holiday! :)

Love to all - look for Haven's very special holiday picture in the mail! She had lots of fun with this one.

FROM ME:




HAVE A GREAT THANKSGIVING HOLIDAY

Small update

Well I was a bit irritated last week and the previous week for obvious reasons and felt it best to probably not write on here. But last week we had the MRI on Monday and chemo on Tuesday. I had hoped to meet with Haven’s doctors on Tuesday after chemo but they were unable to meet with us so I was a bit upset.

I got her doctor’s email address on Wednesday and decided I would send an email of my extreme concerns. Kris was, of course, concerned with what I would write to the doctors and he is probably right in his worries. I can be a bit “not nice” sometimes and have an extreme opinion. :) To put it nicely. I wrote the email and it was about 5 pages of bullet point issues in everything that relates to Haven, hospitals, and doctors. I received a phone call the next morning and talked to her doctor for about 45 minutes.

Here are a few of the main things we discussed – as I am waiting for another call today.

MRI – results are good. No growth in the tumor. We had a few issues here.

Haven’s two Oncologists have been doing stuff…….just haven’t told me anything! Which he says he now knows that he needs to give me every detail as to what they are working on.
a. They meet every Tuesday in a conference with all doctors to discuss patients and Haven is discussed every Tuesday
b. Oncology has a plan but can’t go forward with it until they receive feedback from all doctors: Endocrine, Pulmonology, Neurology, and a sleep study. Once all reports are in they will discuss next treatment plan for Haven with us
c. Doctors have already been in contact with Chicago as for what they did for ROHHAD
d. Endocrine has put in his reports about ROHHAD – which goes with Oncology’s theory
e. Haven’s eye doctor is going on a sabbatical…….so we’re getting a new one.

I was assured that her Endocrinologist knows how to do his job and wasn’t just blowing us off. I have my own personal feelings – and I don’t have to like all of the doctors!

He also knows I'm not a fan of the Neurology center for children but was assured that it is very necessary and that I have to go.

We should find out about the sleep study this week as this is an important way we monitor her breathing.

Again I should have a phone call this evening. Anyway, congratulations to Haven's Oncologist - his wife had their 3rd daughter and he did very well putting up with me!

Ready for the week

Well - we are ready. Tomorrow we have to be at MRI no later than 7:00 am as Haven needs to be on the table by 8:00 am. She is not allowed to eat anything after 5:00 am. So this should be fun! We won't know anything about the MRI until Tuesday when we go to Chemo. So I will try to post on Tuesday night.

I just wanted to thank everyone for the cards that Haven has received over the past year and all the gifts. It's amazing at what a card can do for her. When she doesn't have one for a couple of days she will ask if I called any of her friends because no one wrote her. :) It's cute.

I wanted to also share something she said the other day. We received a card in the mail and it read:

Dear Princess Haven,

My mom told me you were sick. I am writing to tell you I hope you get better so we can play someday.

After reading the card, Haven looked a bit puzzled. I asked what she was thinking and she says:

"Why does everyone think I'm sick?"

I honestly didn't know how to answer that question. She thinks all kids go to the doctors like her because she sees a lot of kids there.

We had a few crazy nights here. Friday night was a bad sleep walking episode. She was on the couch and I slept on the floor next to her. She started screaming and I woke up and she was standing above me trying to take her clothes off. I thought for sure this was another "ugly bugs" nightmare. But she was yelling that she was scared of the dark. After about 10 minutes I got her on the floor with me and snuggled in. Saturday we had a bad dream about a dog biting her. She was kicking and screaming about this dog and wouldn't stop. I had to scream at the dog and tell her I got him away. She laid back down and went to sleep.

I hope to sleep peacefully tonight! :)

Hospital check

ok....so I'm getting a little perturbed but not beaten.....

I have contacted probably about 15 hospitals now and have been dismissed by most of them. Not because they don't want to help but because they don't know anything about ROHHAD and definitely don't know much about it with Neuroblastoma.

Some hospitals have called and just said sorry we can't help you. But a lot of them have come back with referrals to other hospitals that I should check. One hospital told me that I need to specifically look for a specialist in:

Pediatric Autonomic Medicine

So this is what I'm searching for.

So far I'm waiting to hear back from:

Children's Memorial in Chicago - received an email from general nurse who forwarded my info to Dr. Weese-Mayer and I hope to hear something next week

St. Jude in Memphis

Mattel Children's Hospital - a branch of UCLA

Mayo Clinic in Minnesota

Haven's Grandpa B-off is checking on a hospital in Salt Lake City and also reaching out to some friends in the medical field.

Did you know the Mayo Clinic in Scottsdale, AZ doesn't even have a Pediatric department in the hospital? Is that not weird? I figure it has to be because 90% of the population are retirees! :)

Anyway, we've just be b-laxing this weekend and hanging with Grandpa B-Honey. Haven and I worked on beads and necklaces all day Friday. My hands were so cramped after 7 hours of sorting beads. She received a gift card from Laura to Michaels and we went nuts! :)

Ebay

Some cute things I have up right now:

Christmas Stocking - actually have 5 of these!

Diaper bag/tote bag

lots of t-shirts

Well I have finally started the Ebay up. I'm excited about it but just 12 items has take about 5 hours to put up - not included taking a few hours for pictures. Ebay is definitely a lot of work and I have had motivation issues for over a year now with doing it. Finally I have a good reason to do it.

You can look up the Ebay items at bamboozle410

Pumpkin Oatmeal Cookies

Last week when Lauren came over to hang out with Haven she really wanted to cook something with Haven. Haven is addicted to cooking shows and has actually come up with some pretty crazy recipies. And all recipies are super healthy.

This is Haven making her Pumpkin Oatmeal Cookies.

Thank you to everyone

Haven would like to thank everyone for all her mail! She has received a lot of cards and little gifts and we just want to say how much we appreciate it all.

Grandma and Aunt Candy sent Haven a bunch of great winter clothes. They found some pants and shirts and jackets that actually fit her!!! We're very happy!

Grandma Sing had a garage sale and against all odds made $200 and sent it to Haven. We are happy to announce this is her first deposit in to her new bank account!!!

Aunt Dottie is working with one of her friends to custom make Haven some pants. We sent measurements over and I should receive our first fit proto next week!!!

Laura Mueller sent Haven a create a story book (which she already started), gift card to Michaels, and me a gift card to Starbucks!!

Friends and family have sent Haven lots of love with handmade dolls, a super cute doggy that has his own cage, beads to make necklaces and bracelets, window paints, LOTS of Halloween stuff. It's been awesome. Haven is so happy knowing everyone is thinking of her and loving her.

THANK YOU AGAIN TO EVERYONE!!!

The Button

I've received a couple emails about the button to the side ---------->

It is a donate button. It is mainly for anyone that wants to send money directly to Haven and it goes straight to her bank account. She has her own bank account now - that is not linked to ours. Therefore her money does not get mixed with ours and all of her money is used directly for her and only her.

So instead of sending her gift cards or checks you can use that button. If you still prefer to send a check - please make it out in Haven's name. Not our name. This will ensure it does not get mixed with anything we have and goes to her account only.

I used to do Ebay a lot and have a billion things that have been in storage that need sold. But I have had motivation issues until now. As of this weekend I will begin doing Ebay again and all money received from Ebayed items will be deposited directly to Haven's account. The Ebay account is only linked to her and not us.

So if you know anyone looking for a deal on stuff for Christmas they can check her ebay this weekend. I will post a link at that time. 99% of the items are brand new with tags or whatever. It's stuff I have held on to for a LONG LONG time.

Prolactin

My new word...I just learned about it a couple weeks ago.

We're waiting news on Haven's macroprolactin levels.

As described to me by Oncology: Haven started chemo at a prolactin level of 70 - during the strongest chemo medicine time she went down to a 20 - since stopping Cytoxin in September she is back up to about a 40. Normal level is 10 or below.

Oncology is at a stand still right now on where to go. They were not able to give me much information as this is an Endocrinology area. So we have been contacted by Endocrine and our appointment is Nov. 10th at 2pm.

We do not have any information on her Macroprolactin as of yet. This is a rare test that is usually never done so it takes a while. They should have results by the time we go to Endocrine.

What I know is Haven has:

GanglioNeuroblastoma Cancer
Hypothalamic Dysfunction
Paraneoplastic Syndrome
Low Opsoclonus/Myoclonus

and now possible issue with the Pituitary gland.

So you can see where the doctors could be baffled....heck - I can't even believe she has one of these let alone all of them. How can one person at age 4 have all of this. It's just .... I don't even know what it is.

I will update everyone after Nov. 10th.

Love to all

Halloween Photos

Here are a few pictures from Trick or Treat night. Haven and Stryder ran around the housing area on base for about 1 1/2 hours! It was so cute. When we got to the 2nd street Haven looked up at me and said: "Mom, I can't believe I'm trick or treating!" She was so excited.


The Renaissance Princess and the Pirate


Haven took very good care of Baby Stryder. She reminded him that she was his big sister and he had to listen to her. She doesn't quite understand the cousin vs. sister yet!


Stryder was not a fan of this house! Haven just wanted candy!

Haven did all the knocking on the doors. She said Stryder was too little to do it.

This was the last house after 4 blocks of candy!


Saturday was around 70 degrees so we all went out and played with lots of silly string. Of course, my dad likes to get my hair covered in it. I wasn't happy!


Stryder really didn't like the silly string at all.

My beautiful angel