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