6 Week Oncology Visit

Miss Haven had her 6 week visit to Oncology today. She did as awesome as she always has.

So far Miss Haven is holding steady. It's been 15 months since our last huge chemo treatment and 11 months since we were in isolation and my baby girl is doing AMAZING! Everything that reversed after the chemo is still holding steady....we've seen nothing revert back. She isn't even wandering the house in her sleep anymore...she still screams and yells but hasn't walked the house in 4 months.

She also didn't need her IVIG boost today --- so they will recheck her on November 13th!

Next up Endocrine appointment!

Sleep Study

With ROHHAD Syndrome you are required to do a sleep study to monitor the gas exchange when breathing which gives the doctors a starting point when noting if the breathing is getting worse. Some of Haven's friends, Josh and Mason, are already on ventilators to assist them with breathing. Haven's friend Sophia has had her tonsils and adenoids removed to help her with breathing.

This was Haven's 3rd sleep study in a year. She was last diagnosed with Mild Obstructive Sleep Apnea, however, her sleeping has gotten crazier. We are extremely proud of Haven on this sleep study. She did extremely well and we couldn't have asked for anything more!

By 9:30pm Haven was wired up and ready to try to sleep. Usually it is very difficult for her to fall asleep and we always tell them the results are not true to her sleep pattern....this test was exactly what we have been waiting for. Haven handles getting wired up pretty well but she really doesn't like the stickers on her face and the tubes up her nose.

Only one parent can stay the night with the child so Kris usually stays because I'm better at doing the driving. It's about 1 1/2 hours away at Mt. Washington Pediatric Hospital. So I got home around 11pm and tried to sleep. I finally fell asleep around 3:15am only to have to get up at 4am to go back to the hospital and pick them up.

When I arrived Haven was waking up and the tech was telling me all about their crazy night! He said he has NEVER had a child like Haven. All the techs were watching her on video and just amazed at Haven. Kris was extremely excited about this study. She did exactly what she does at home. She was screaming and sitting up and arms and hands were flailing. The tech told me he has never heard a child reprimand anyone like she did in her sleep. Kris said there was quite a bit of snorning and a few areas of small choking and going back to normal.

We are very proud of Haven as this is the best sleep study she can give. We were starting to feel like everyone was thinking we're just crazy. She never sleeps the way she does at home and we keep telling them that she's crazy in her sleep. We used to have to leash her to the bed so she wouldn't run through the house.

We won't know any results until next week most likely. As soon as I have anything I will update you all with the info. Thank you to everyone wishing Haven a good night sleep....she got an A+ and got to do a little shopping for being so great.

This was at 5:30am after a wild night partying in her sleep!

Thursday visit to Arnold Palmer Hospital

Haven's levels needed checked - even on vacation. So we headed to Arnold Palmer Children's Hospital Pediatric Clinic. Haven was very good and she helped the nurse out a lot.

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I received a phone call that evening. Haven's levels are too high again. So we have adjusted her chemo to a lower dose until we can get back home and back to Johns Hopkins!

Thank you everyone at Arnold Palmer for helping my baby! :) ooohhhh....I mean big girl! We were all corrected many times that she is no longer a baby - she's 5!

Haven's Updated Schedule

Well while we are preparing for Haven's 5th birthday tomorrow I thought I'd stop and share a few schedule updates. I am probably overly stressed....but I feel like a crazy woman! I have a million things to share with everyone but very little energy to type it out! I'm so happy my friends are able to come to Haven's birthday tomorrow - as she does not have any friends her age around here.

Here are the updates:

Levels have been great the last 3 visits to Oncology. So for right now we will stay on the same dose two times a day.

We leave for Disney next Tuesday, January 27, evening so Haven will have another level check on Tuesday morning

Audiology testing on Tuesday morning

Friday, January 30, we will go to a hospital in FL to have Haven's levels checked (chemo doesn't take a vacation)

Back at Johns Hopkins on February 4th for another level check

February 12th we will meet the Orthopedic Surgeon that will perform the surgery on Haven's back. He will exam the tumor on her shoulder blade and discuss with us how they will go about removing it.

March we will have another sleep study

March 26 we will have surgery on both eyes

March we will test Haven's blood gas levels and meet with Pulmonology again. This seems easy but when we found out today how they do it we decided she needed to be put to sleep.

I will get more info to everyone as soon as I can. Right now I am again covered in hives - I love it! Every 3 doctor phone calls I break out in to hives. It's amazing. Well I must get back to work on the house.

Love to all
m

Update on Haven

Quote from Haven's Oncologist that sticks with you: "I feel a lot of pressure. Chemo is a slow methodical process that you have to tweak to make right and it takes time. ROHHAD is a scary syndrome and can become a life threatening emergency overnight. Time is against us with Haven".

Haven had a full day of chemo on Friday. Dad and Haven got in to the hospital around 7:45 am to get ready for Haven's 8:00am blood test for her chemo levels. Then immediately after that started the other chemo for the day. I heard that after they gave her the Benedryl she passed out for a while. Let me tell you, when we do all day chemo treatments at the hospital and Haven is just laying in the bed waiting for the bottle to empty (6 hours later) it can be a LONG day! So sleep is always welcomed......I always request it to be taken through the port instead of orally! It hits her faster and helps her sleep quicker. Plus throw a hot blanket on her (they have these heated like from the dryer at home) and she is OUT!

Kris met with Haven's Oncologist for quite a while in the morning. Then I got a call around 11am to let me know what they had discussed and if there was anything I needed to add or if I had questions. I had to work so I couldn't be there. I know Kris gets nervous going in by himself because I'm the one the keeps track of dates, surgeries, doctor appointments, and research of ROHHAD. So I sent him a text of a few key items that he needed to discuss.

Haven will be having another surgery planned. We're waiting to hear from her surgeon as to when he feels it should be. Her eye surgery is March 26. This other surgery will be for the massive lump on her back. No one knows what the lump is but it is bothering her a lot lately. So once I hear more about that I'll update everyone. We will also be meeting with an Orthopedic doctors for her back and starting physical therapy as she is having too many back pain issues.

I received a printout from the doctor of Haven's weight and height since last January. I wanted the comparison for my records from the past year. It also shows her blood pressure each week and temp. So this was very exciting to me! I'm easily excitable!

We are now required to do a daily log of any changes and anything we notice. So we can look back on the records in one month and decide if she should be off this chemo and put on something else.

Haven's chemo dose was increased on Friday and Haven and I will be at the ER at Johns Hopkins on Monday morning at 7:45am! Whew.....luckily I have the day off and don't really like sleeping in! :)

Love to all!
M

ROHHAD Updates

Well I haven't updated everyone in a while on all the angels with ROHHAD. There are quite a few things happening. I'll start with my baby first!

Haven with a Paula Deen autographed picture

HAVEN: She is at the hospital right now getting her levels checked and has a full day of chemo. They will be meeting with her doctor to discuss how everything is going. They will also be discussing possible back surgery for Haven, upcoming eye surgery, upcoming pulomonology appointment and anything we've noticed while on this daily chemo. Haven is currently sleeping about 4 hours a night with constant wake ups and major pottying problems. She has gained 4 lbs since the beginning of December and 2 lbs in just the past 12 days. I have been keeping Haven's FLICKR site updated with photos from years ago to now. We're also excited to have Haven featured on MAKE A CHILD SMILE for January. We're working on her birthday party for next weekend and then we're off to Disney for a week!

Mason and his dad on New Years Eve

MASON: I talk with his mom daily! He is doing pretty well. He was scheduled to see Dr. Weese-Mayer on January 12th but that fell through with insurance not accepting. ROHHAD is a rough syndrome - no one knows about it and insurances don't want to pay for something that isn't known about. Mason has been slightly congested and since he is on the ventilator whenever he sleeps there house can get crazy! I love the stories. Every time he coughs or sneezes his ventilator alarm goes off and everyone is immediately in his room. They are on the same schedule as we are...wake up about 4 to 5 times a night. Funny story: Mason was sleep walking about a week or so ago and they woke up with alarms going off and all this craziness. Mason remained connected to the ventilator and dragged it down the hallway with him. I could not stop laughing.....I know what we go through at night and I could imagine waking up to all that! We also found out that Mason is a huge fan of Minnie Mouse! :) His baby sister, Cameron, is always stealing his Minnie. PS: I'm pushing Julie to get a site up for Mason!!!

Sophia and her big sister

SOPHIA: Miss Sophia has had a REALLY bad time through the holidays and beginning of the new year. I keep in touch with her mom as her schedule allows. On Dec. 27 Sophia had her sleep study and slept the same as at home. Waking about every hour, talking and crying out in her sleep and as she normally does everyday, woke up at 5:30am and threw up. On Dec. 30th Sophia had her MRI for the full body - to locate any masses. This trip ended up lasting 6 days in the hospital for Sophia. The conclusion of severe sleep apnea led them to rush Sophia into surgery to remove her tonsils and adnoids. Due to her low oxygen level Sophia remained on oxygen most of the time. During the MRI they noticed that Sophia's lung was full of fluid and was essentially getting squished. They suctioned it out and then again during surgery they had to suction it out again. Today Sophia is doing a bit better. She has another sleep study at the end of February, meeting with behavioural medicine. Her Cortisol levels and Prolactin levels have been pretty high so they are waiting on word regarding those. You can check out Sophia's web site HERE or on the side bar of Haven's.

Josh and his two cousins

JOSHUA: As you know - just at the holidays Josh was headed to the hospital for some major testing and meeting with his Cardiologist. It seems as though Josh has developed a pretty major sinus infection that alerted the doctors to start a test for Cystic Fibrosis. They don't believe he has CF but it's definitely best to rule it out - who knows what this syndrome brings with it. His Pulmonary tests showed more evidence of airway obstruction and he will now also use a steroid inhalent. Josh is on the ventilator 24 hours a day. He is allowed to take small breaks from the ventilator but he is watched closely. He has had a few high temperatures over the past week. We're constantly checking in on Vanessa's blog to make sure Josh is doing well and the entire family. They have some great photos up that are awesome. I love to see everyone.

NIKKI: I have not heard from Nikki's mom in Australia since right before the holidays. We hope to hear from her soon! Hope all is well down there and Nikki is home or on her way home.

Make A Child Smile

My baby is one of the featured children on Make A Child Smile. MACS features kids that have a life threatening illness and encourage people to send cards to them to make them smile.

If you click the link above or HERE you will see Miss Haven. She is absolutely adorable!

Thanks Randi

End of 2005

So my friend from a billion years ago sent me some amazing photos of Haven and her friends Ashley, Lexy, and Annika. I can't believe it....there are many photos in my house that Randi took of Haven during the time she was watching her during the day. Check them out on her flickr site. I put them in the Haven's friends folder.

Haven's Schedule

Kris took Haven in to the doctor on Friday to have her levels checked again. I honestly didn't know what high levels meant or what we were even looking at. After having her levels checked Kris met with Dr. Paz-Priel to review everything.

Haven is now scheduled to be in the hospital to have her levels checked three times a week - Monday, Wednesday, and Friday. She still takes the chemo two times a day (8am and 8pm) with her other medication. We just lowered the dose temporarily. Once she is stable they will again increase the dose.

Normal levels on this chemo (which I just found out on Friday) are at 150. Haven was at 300. So double the normal. I haven't listed the name of her chemo because it's too confusing when you read on it. Usually this chemo is given to bone marrow cancer patients or Leukemia patients. So it doesn't make sense to the normal person when they check Wikipedia or something. But we understand why she is on it and how they came to decide to use this one.

This week:

Bloodwork - Monday
Full day chemo - Tuesday
Bloodwork - Wednesday
Pulmonology - Thursday
Blood work/Dr. Paz-Priel - Friday

Kris will take Haven every day and I will meet with him on Thursday at the hospital. I have never met the Pulmonology doctor and have a list of questions for him.

The New Year: 2009

We hope everyone had a wonderful holiday break. We definitely had a nice enjoyable much needed break. We're trying to get back in the swing of it now and get back to "real life" as much as possible.

We have so many people to thank for everything they have done for Haven this year. We want to thank everyone that has donated to her - everything is much appreciated. To everyone that sent her gifts and cards - THANK YOU. To Johns Hopkins Riverside - THANK YOU! Our Disney trip is right after Haven's birthday!

Over the break I RARELY looked at the computer (can you believe it) but here are a few donations that came in that we want to say THANKS!

Aunt Dottie and family - thank you for the donation
Rick Family - thank you for the donation
Stilwell Family - thank you for the donation
Shockey Family - thank you for the donation

Now back to your regularly scheduled program!
Love to all

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.

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

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

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!

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