Mason - ROHHAD

Hi Everyone! This is Haven's super friend Mason! He has a major update on his web site. He will begin a similar treatment for ROHHAD that Haven started doing in 2008 which by accident showed positive results with ROHHAD. Which lead us on the trail of treatments she has been doing the past 1 1/2 years.

I would love if everyone could please send some positive thoughts and extra love to Mason. He will begin next week. Please read about him at his site. I will update on him in the Friends Of Haven blog at the side of the page.


Mason's site is: www.caringbridge.com/visit/masonbyrom

We can't wait to see you at Disney Mason!

Updates

Miss Haven's IgG levels were great this week so she will not need to have IVIG this Friday and it has been postponed to next Friday. She is very happy about this because IVIG takes about 6 hours to administer!

As for her MRI - she will not have the head done on this round. It was too late to add it to the order. If they would've added it to the order it would've caused the hospital to have to cancel another child's MRI and require more anesthesia than was originally prescribed. Since ROHHAD children already have issues with anesthesia we will wait until the next scan to add the head. it is definitely good to have the head scanned for tumors once a year as it has been noted that some ROHHAD children have developed tumors in the brain as they have aged.

MRI remains set for next Thursday - hopefully it is early in the morning because she can't eat before she goes. Without the head scan she should be out within 4 hours.

Our Newest Edition

Well we would like to introduce the world to our new little girl. We're very excited to have her join our family. Haven is overwhelmed with excitement.


She is only 3 weeks old right now but Haven was specially invited to come and see her new puppy early. Haven asks us every day what she would be doing, where she would be sitting, what she will want to play...everything. Now she knows what she will look like!
There are 2 girls. The picture above and this one. Haven didn't pick which one she wanted yet - we're going to do that in about 3 weeks when they are a little bigger and have a little more personality. Right now they are barely able to hold their heads up or walk.

Here are all of the gorgeous puppies. You just look at them and want to love them all. There are the 2 girls and 3 boys. I love the stretched out legs.


This is Haven giving the mom, Bonnie, a treat. What type of dog did we get? A Miniature Schnauzer. For years I have wanted a black/silver and they are hard to find. We were going to get one for Haven at the beginning of last year in hopes of helping her with depression and all her medical issues but hospital plans changed that. Now that we have gone through some major hospital stays we felt Haven deserved to have a real life puppy to love.

This is the mom, Bonnie. She is absolutely the sweetest dog I have ever seen. She is so gentle and loving.




Above is a video of the babies eating. I have never seen this before so I was happy Haven was able to see it.


So what is her new puppy's name? Well.....ever seen the movie "The Secret of Nimh"?

Nickademus Anabelle --- or Nikkideez for short --- will be joining us on Thanksgiving weekend!

Thank you Karen for letting Haven come to see her new puppy early. She has been non-stop talking about her. Even practicing holding her on her stuffed animals.

Share Our Stories

HI Everyone.....

Over the past few years of writing Haven's blog we have made many new friends and Haven has a lot of fans out there. That means all of you know about ROHHAD and Neuroblastoma Cancer because you took the time to care for our child as if you really know her. I try to make her blog personal to you so you can connect to her and feel her happiness and sadness and pain and joy. She is precious to us and means the world to us.

As Haven is everything we have, there are more of us out there. More ROHHAD children have been diagnosed over the past year and more have come out to talk and share their stories with us.

I ask that you please check out the "Friends Of Haven" section and read about the children and share their stories. We can only gain recognition of this horrible disease with your help.

Thank you all for helping us take care of our baby and giving hope to all of the families.

Check Up

Miss Haven had her check up today since being released from the hospital. They are very happy with everything directly related to the treatment. She is still climbing in weight and is right now at 81 pounds. But her blood pressure and glucose are stable. She hasn't been sweating or having weird temperature issues - so we're happy with that. The sleep walking is starting to calm down - it usually takes a couple of weeks after these hi dose medications.

She will spend next Friday at the hospital for the day getting IVIG but she's excited because she is going to dress up for Halloween that day. All the doctors and nurses are dressing up.

Then on November 5th she will go in for her MRI of the abdomen to check on the Neuroblastoma tumor. There is still a small amount that remains but so far it has not grown or shrank. I have requested to also do an MRI of the brain to check for any possible tumors. Some ROHHAD children have had tumors develop in the brain as they get older.

Then on November 6th she will be back in for lab work and a review with her doctor.

I honestly think she likes to go to the hospital now. It gives her something to look forward to and some where to go where everyone wants to talk to her and play. I am asked every night before bed if tomorrow is a doctor day.

Saturday we are going to try to go to a pumpkin farm and pick out a pumpkin. Haven has not been to one since she got sick in 2006. I hear it's going to rain so I'm keeping the fingers crossed.

If you read over in my spot we will be sharing the family expansion news this weekend. Haven has been wanting to tell everyone.

From Haven

Haven and Hippo (little dude in her hand) wanted to tell everyone HI and thank you. She is super happy to be home and is ready to be a Princess Butterfly for Halloween.

PS: And she likes to say "Super Duper" all the time

:)

Home from the Hospital

Miss Haven is home from the hospital. She has been doing very well. Only minor things that we've been able to call the doctors about. Right now the only issues we've been having consistently is some major sleep walking issues. But our baby is home and happy.

Miss Lauren has gotten her flu shot and is set to come by to see Haven for the first time in about 5 months. They are going to do a little catch up visit.

This Friday she will go back to see her doctor and they will check her over completely. But right now she is doing very well and is happy to be home. Because she is the first to receive all this treatment for her condition we do not know when or if we will see results. We just have a lot of hope.

Melanoma

Too read more on my sister you will have to look at my blog. I am moving everything from this blog that doesn't pertain to Haven to my blog. Just to keep them separate. It's on the side titled "just a mom"

Hatel - Haven's Night Nurse

Well....Haven has a couple of nurses that are her ultimate favorite that she loves to hang out with when she is at the hospital. Nurse Katie is her favorite clinic nurse and she does the best port accessing. Then Nurse Claire is one of her night nurses on the inpatient 8th floor and then Nurse Hatel. This is the nurse that Haven kept calling in for hugs and talking.


Thank you Nurse Hatel for always taking such great care of our Haven.

Hanging out at the Hospital

Miss Haven working on her puzzles. She did very well with all her medications.

Some how she has become a gamer. She loves playing the PS2. What is super cool is that the rooms have the computers that come out over the bed so they can relax and still have some fun.

Sister

My sister is currently in surgery as I type. I will update everyone as soon as I speak with her husband.



Since I like to ramble a lot I'm going to start putting it in to my blog. This is where you can read up on my personal stuff or family stuff. My blog is HERE. I have felt a bit censored and confined and believe writing in my own blog will help.


I have lots of updates on Miss Haven as well. I will also be updating her friends section this weekend.

Mason Needs Good Karma

Sorry to not post for a day or two - I can't remember really. But our baby girl woke this morning with some severe chest pains and very high blood pressure readings that have remained all day. Yesterday she slept A LOT. So we've been watching her. I'll get a few posts up in the next day or two.


I've also been keeping tabs on our friend Mason. He has been very very sick and his O2 has been dropping and CO2 has been rising. He has been in and out of the hospital. So if you could please send a note to him and think of him I'm very sure his mom and dad would appreciate it!

His web site is: MASON BYROM and you can leave him a little note there so his mommy can read it to him!

Another day

Miss Haven playing PS2 today. She has probably slept about 6 hours in the past 2 1/2 days. This medication is keeping her wired but her spirits are up. Kris has been staying up every night with her massaging her feet. One of her favorite nurses has been with her every night - Hatel. Haven even pages her in the middle of the night for hugs. The nurses just love her. One issue is that she is freezing all the time but she is sweating and when the nurses come in at night she is completely undressed and doesn't remember why.

This is Haven right before her medication getting her night time snack. On Mom and Haven days we usually stop off at Starbucks and get a skim milk hot chocolate and a petite vanilla scone! So today I brought her a special treat for doing so well with her medication.

Here is my baby tonight at 10:30. She gets extremely cold after her medication. I think she had about 10 blankets on today when I got there. She has had extremely bad headaches the past few weeks and this medication has been amplifying them. Her little bald head freezes really fast so as you can see her robe is wrapped around her head.

I just want to bring my baby back home.

First Dose of Treatment

We received a few warnings from our doctor on Friday.

1. There will not be an Oncologist on duty this weekend that will know anything or understand ROHHAD - so if you have questions email him or wait for Dr. Chen on Monday

2. Haven will be grumpy and irritable

3. Haven will be extremely hungry!


THANKS DOCTOR!!!!


Well yesterday when we signed in to Haven's room it was pretty funny. She is in the same isolation room she was in this Summer. It almost felt like home. This was her earlier in the day. She was playing PS2 and having a blast.

This was right after her 1st dose. She received her antacid right before starting. She was extremely sick within 5 minutes of starting the treatment. The nurse gave her some anti-nausea medication. But it just wiped her out.

I received a text around midnight that Kris was asleep and Haven called the nurses station and asked them to send her nurse in because she needed a hug and she was feeling lonely. The nurse came in and when Kris woke up she was sitting on her bed hugging her. He didn't know what was going on. She hung out with her nurse - who is the same night nurse she had before - talking about Disney and the Make-A-Wish people coming to visit her.

Today at the hospital I snuggled in to Haven's bed with her and took a very nice nap while tickeling her littles (hair). It was so relaxing and quiet. But I can't wait to get her back home.

thank you to everyone for praying and thinking of our baby.

Gifts from Down Under!!!

Haven received some great gifts from her friends in Australia the night before she was admitted.

Niketa (Nikki) is noted in the Haven's friend's link. She was admitted to the hospital in September 2008 and then remained in isolation there until August 2009. She is one of our special friends who also has ROHHAD. Her mom and I have remained in contact throughout the year and we've kept tabs on Nikki.

We are so happy Nikki is back home and enjoying life with her family.

Thank you all - love you lots!

Photos never posted

I found some photos that we had taken but never posted.

Flushing the Hickman Line before the removal

Tubey - or the old Hickman Line - after being removed from Haven's chest

Building stuff with her dad. Haven loves to work with the tools and help dad build things

Haven's Prayer Blanket from Barbara in California

Haven's zodiac quilt from Jackie Bennett and Kim Lewis with Love Quilts to Make a Child Smile



Haven in clinic with Bongo her monkey

Princess Haven

She was very happy to be able to bring the gowns that "aunt" Emmy made
for her on this hospital trip. It's hard to find gowns that fit her.

We also brought our own cleaning supplies and food. To ensure we do not
have a C. Diff issue this go around. While Kris took Haven to the
playroom to pick out books and movies I scrubbed down the entire room.

She was allowed to bring her babies with her this time and she received
some new Kangaroos from her friends in Australia just in time! Thank
you Karen and the whole gang!

--misty

Clinic

Well we are at clinic to do labs and sign in to
Haven's room. She will start the first dose shortly.

--misty

UPDATE

I received an email this morning from Haven's doctor - She will be admitted this Friday at noon to begin treatment.

High Dose Treatment Schedule

Haven is scheduled to go back in to the hospital on the 8th Floor isolation area October 16th.

Friday Kris and I had a 2 1/2 hour meeting with her doctor and discussed previous treatments and the new suggested treatment. I learned more about molecular biology and cell division than I ever learned in school....and I actually understood it better when he described it.

The Hi CY only attacks cells that divide....leaving immune cells in the system that don't divide. This next treatment is to attack the cells the don't divide and see where that gets us. We have high hopes and considering we don't know what happens with ROHHAD and the chance of something being irreversible we signed without hesitation.

Our main concerns, which the doctor pretty much said Haven is guaranteed to have is:

High blood pressure - she will be monitored and most likely go back on medication due to the fact that she borders on hypertension now.

Diabetes - she will most likely become diabetic during this treatment and they will monitor her closely and she will most likely need insulin injections. This should only be temporary and go away after a while.

My concern is that 1. we've had High BP for 2 years and just got off the meds and 2. ROHHAD has a way of developing diabetes without the help of a chemical that makes you diabetic.

We'll keep everyone updated - as for now she has 2 weeks off from the doctors and I'm sure she is going to enjoy not driving to Baltimore!

Make-A-Wish visits Haven

Sandy (left) and Lori (right) came to visit Miss Haven on Saturday morning from the Make-A-Wish foundation.

Our social workers and doctors at the hospital submitted paperwork for Haven for her wish and we received a call that she had been accepted. It was a great call but weird as well. You know you have to be terminally ill or seriously life-threatening to get a wish granter to come to your house and that is the sad part. But they make you feel special even when you just talk to them on the phone.

Lori hung out with Haven while Kris and I talked with Sandy (the boring medical side of it). I think Haven talked Lori's ear off for over an hour. Every once in a while I would tune in from across the room to see if Haven was talking and she was having a blast. She was telling stories and talking about her babies and what they like to do. Talking about TV shows. One point Kris and I both heard her tell Lori "I've never even had ice cream before"..........I couldn't believe it! Of course she's had ice cream - it may be sugar free and low cal and not in a cone but it's ice cream. She then corrected herself and said "well I've never had it in a cone!"

Haven discussed her wish of going to Disney with them and actually meeting the princesses and that she would like to play dress up with the princesses for her wish, she also discussed what her babies have wished for.

Disney has helped Make-A-Wish for so many years and there are so many great things they do for the kids I believe Haven will have some amazing memories. They have a special bungalow hotel for them, they pay for everything, and get us to the airport and back with no worries. I really hope she gets her wish.

We had lots of fun though. Haven was more outgoing and talkative than Kris or I could've ever imagined. Thanks to all her nurses and doctors for quizzing her all week to prepare! :)

Steroids

So I've been on Prednisone for 3 days now for my foot and I would have
to say it is definitely in my system. If you've ever taken it you'll
know what I'm talking about. Now I'm just trying to imagine what Haven
has gone through.

I'm on 20mg a day for 7 days...Haven was on 54mg a day for almost a
year!

Every pill makes my face and neck red and it feels like I have an
intense sunburn. The rim of my bottom eyelids itches and burns. I'm
itchy everywhere. And I have an extreme nervous energy....not to
mention it makes me insanely hungry.

I remember taking it in college when I had bronchitis and I had crazy
hallucinations only to find out the hospital mixed it with Theodur and
they shouldn't have. This mix caused me my lungs to freeze when I would
inhale giving me Castrochondritis and lots of cortisone shots. All I
can say is I'm happy to only have a couple days left!

But on the happy side.....my foot hurts less!!!
--misty