Tuesday, December 28, 2010

ROHHAD sucks

As with most mothers of a child with Cancer I should be stressed and worried about this and it coming back. If you sit and think of one of the worst things that could happen to your baby it would be that they would be diagnosed with Cancer that randomly selects who it wants to attack. However, then you throw in ROHHAD and I don't even have time to think about weather or not Haven will have Leukemia before she is in her mid 20's or if all the chemo she has taken will cause another type of Cancer we have yet to hear about.

Haven has done a couple years of experimental chemo that has completely regressed some symptoms and helped her in so many ways. She is a completely different child now than she was when we first entrusted Hopkins to save her life.

In 2008 (at age 4) we were told - Haven is on the progressive road to stop breathing on her own by age 7.

I have been terrified of this number since then....almost 3 years. As it is Haven is set to turn 7 on January 26th.

In early November I scheduled a meeting with her Pulmonary doctor and told him that I had noticed Haven was snoring a lot and very loud. I also noted to him that her chest was caving in a bit while sleeping like it was hard for her to breathe. Her sleep walking episodes are also from 4am - 7am. Sleep walking should start around 3 hours after falling asleep in general.....not when you are about to wake up. So she was evaluated by two doctors and quite frankly when I request a test they usually don't argue if I bring some facts.

So Haven was scheduled for sleep study immediately and we did her test on November 26th. During that time we changed phone numbers a few times and my numbers weren't in the Hopkins system so they couldn't get me. Finally Haven's pediatrician got the info and sent an email to me to urgently call her and come in.

So on Dec. 22nd I rushed over to the Peds office and reviewed Haven's sleep study results in detail with her for about 45 minutes. She gave her suggestions and listened to what I wanted. Then we conference called her Pulmonary doctor to review the tests and figure out where to go from here.

Comparison (normal CO2 being between 35 - 45) :


Feb-09 Aug-09 March-10 November-10
Oxygen 98% 97% 98% 93%
CO2 49 50 45 51
Resting HR 160 145 90 85














So you can see in the above before and after chemo - those are just some basic stats of Haven. It's hard enough for family and friends to understand and comprehend anything about this disease so we'll keep this easy! :)

So in 2009 I was told it is VERY difficult to jump up from 50 to 51. That it is a big jump to go up one point and they didn't think Haven would do it any time soon. Then after he chemo she actually dropped 5 points. Which was amazing and Haven has never been diagnosed with an apnea in any of her million sleep studies.

November 2010 report:
  • CO2 jumps up 6 pointsO2 drops
  • Approximately 5 episodes every hour
  • Sleep efficiency rated at an 81%
  • Abnormal gas exchange
  • Prolonged period of wakefulness from 3:30am until 4:30am (not related to seizure but is parasomnia)
  • Snoring is a level 3 out of 4
  • No significant central apneas
  • Paradoxical inward rib cage motion (her chest is caving in when trying to breathe)
Haven is now diagnosed with Moderate Sleep Apnea from zero apneas.

Obstructive apneas occurred during REM sleep
Desaturation episodes occurred during non-REM sleep


So what is next???

Chemo and meet with Oncology on January 3rd (due to Haven's drop in IgG levels she will have chemo for her next few visits no matter what her labs are)

ENT - we have been referred to one of the top specialists at Hopkins for Pediatric ENT. I will schedule this today to have her Adenoids and Tonsils checked. You know tonsils but adenoids are hidden here:



Pulmonary - fitting Haven for a C-pap machine, however, discussing my growing concerns with this as well. If you haven't seen one it looks like this and she'd wear it every night at bed time.

If ENT concludes that Haven's adenoids and tonsils are too large and wants to do surgery as of now we have decided to decline this. It has to be an extremely good reason that a C-pap wouldn't work. This would be Haven's 8th surgery and who knows how many times she's had anesthesia for MRI's. Each time Haven has anesthesia she is in the hospital longer and on Oxygen longer. Yes I know this is a basic surgery and whoop de doo......but Haven's last surgery was only 30 minutes long but left her on oxygen for 2 days.

Fitting for C-pap will happen after the first of the year - which will then include multiple sleep studies to make sure it is at the right pressure. And yes I know a C-pap is a whoop de doo thing too....but not for a 6 year old. So if you are age 45 don't say "oh I have one of those, it's nothing".....did you have one when you were 6? We haven't even decided if this is what we want to do either.

Anyway.....this was our latest sleep study. Usually I forget we even had them and am reminded by a doctor when they say it was uneventful. But this time I had her doctors hunting me down.

Yeah.....on to 2011





















Monday, December 27, 2010

Christmas time

We had a very nice Christmas. It was smaller this year because Mr. Stryder wasn't able to visit but it was nice and cozy. I love not having to rush out in to the traffic with everyone else and stress about getting somewhere. It's just too hard. We had gone to Virginia right before and that was enough travel time for us! :)

We spent Christmas Eve with Grandma and Grandpa B-Honey next door. Haven got some perfume making equipment, stuff to make some crazy bracelets for her friends and a kit to make some flavored lip balm. My sister and her son Mike came over for dinner and presents.

Miss Haven also got a very nice handmade blanket from her Aunt Wendy in CA. Immediately she had to put it on her bed.

Haven also received a care package from Angel Hugs and Matt's Helpers Foundation. Project Angel Hugs sent her a bag of reindeer food so she could sprinkle it all over the yard. She hit every corner of the back yard with Deez putting the food down for the reindeer.

With our tree ready she was ready for bed so Santa could come. My family tradition is to open the presents from family on Christmas Eve....Haven isn't a fan and doesn't like to open presents early. So after much begging from me and her dad she allowed all of us to open one or maybe two presents.

One of the presents Haven picked was from her Grandpa B-Off and Grandma Sing (Fowler grandparents in Utah). It was a beautiful scarf made by Grandma. She immediately wrapped it around her neck and stayed in it the rest of the night.

Christmas morning!!! Haven got every one up at the crack of dawn and headed down the hall screaming!!! First up was the stockings and then she played Santa and handed out all the presents!

Looks like Miss Haven and Deez were good girls. Finally I get to open my presents from family too!!! We also received some beautiful cards from our friends. One of them we received was from our newest friends in South Africa. Thank you Tarren and Jessie! We loved the angel ornament!


On Sunday we had a little bit of snow which Deez absolutely loved. We dressed her up in her new Christmas sweater and she headed out to play with Dad's RC car. They weren't out too long since it was so cold but she definitely had a great time!!!

We hope everyone had a nice Christmas. We're looking forward to another long weekend for New Years!

Thursday, December 16, 2010

Christmas Visit to Grandma and Grandpa in Virginia

Last weekend we headed down to Virginia (Christiansburg to be exact). Which is near Roanoke and around way too many Hokies for me! ;)

We started our trip by thinking we'd hit the 70 and that it would be faster....a little over an hour in to our drive the freeway was shut down due to snow and we flipped it around to hit the 270 down to the 495. Luckily that was open and once we actually got in to VA it was clear to drive.

As you can see in the above picture Deez does not have a problem traveling in the car! :)


We got to Grandma and Grandpa's before dinner and Haven got to help them put up their Christmas tree. They were waiting for her visit to put it up.


We took some beautiful pictures in front of the tree and loaded it up with all the presents. After breakfast on Saturday we would have our Christmas.

One of my favorite pictures....While Haven was sitting waiting for me to get the camera ready the dogs rushed up and gave her lots of kisses.

Here is Haven with Grandma and Grandpa.

Can't forget Baby Deez....she learned to get up on the ottoman from her uncles - Hector and Hercules. Deez had the best time ever playing with the boys. It was hilarious just to watch them run around. Deez was definitely the one with the most energy.


Here is Miss Haven during our Christmas present opening helping Deez with her presents. Deez got a beautiful basket to hold her toys with a new toy, treats, and doggie accessories.

Miss Haven is a huge fan of Fancy Nancy and the Pinkalicious gang. This Fancy Nancy came from her Great Grandma Bist in Michigan and she also got a Pinkalicious keepsake box with books, another Pinkalicious book, and a journal to write down all her thoughts. Very cute.

Saturday afternoon Grandma and Haven set out to bake Christmas cookies and a birthday cake.

Here they are finishing up the cake before dad sees it.

Mmmmmm...yummy pumpkin muffins!

Lots of Christmas cookies. Haven was excited to take these back to school with her and she shared a special package with her teacher.

We had a great two days visiting Grandma and Grandpa. Deez had a blast. We'll have to get down there again. Here is Deez saying good bye in her sweater and we hope everyone has a great Christmas!

You can see lots more pictures on Haven's FLICKR site HERE

Wednesday, December 15, 2010

Dropside Cribs Banned



(CNN) - In a unanimous vote Wednesday, product safety regulators agreed to ban the production and sale of drop side cribs in the United States.

The Consumer Product Safety Commission voted 5 to 0 to implement a new federal crib safety standard that does away with the traditional drop side crib design.

The ban goes into effect in about six months, or by June, said CPSC spokeswoman Patty Davis.

Davis said the new regulation also enforces stronger crib mattress and sturdier hardware and more rigorous safety testing of cribs.

Dozens of infant deaths over the past decade have resulted in recalls of millions of drop side cribs in the United States.

The agency said between November 2007 and April of this year, there were 36 deaths associated with crib structural problems after babies became entrapped and suffocated.

Retailers and manufacturers have already been phasing out the traditional drop side cribs, Davis said.

When the new rules go into effect, they will no longer be allowed to make or sell this style of cribs, she said.

Tuesday, December 7, 2010

Going to Grandma's House



Well it has been a long time.....I believe over two years....but we are taking Miss Haven to Grandma and Grandpa's house in Virginia this weekend. Haven is so excited and has talked non-stop about it.

She and Grandma will be putting the Christmas tree up together and enjoying some tea time. Then they are planning some baking and crafts! We are also doing Christmas and Haven's dad's birthday while we are there. I am looking forward to a nice relaxing visit. Miss Deezy is going with us so this will be her first road trip. She should make it very very interesting!!! Plus she will get to see her relatives Hector and Hercules (Grandma's Bichon's) for the first time. It could be a party with the three of them!


We're also hoping to see some snow while we're there. I hear the 95 should be a mess by Sunday so hopefully it will hit AFTER we get home!!! This was a picture Grandma sent to Haven a few days ago.

Monday, December 6, 2010

Christmas Gifts for Haven

If you've seen Pinkalicious.....she MUST HAVE it.....is pretty much all I hear. There are a million of them and she even has her own gang of Goldilicious and Purplicious.

It's much easier this way - since I can reach all family members instead of separate emails and texts! :)

I have an odd 6 year old - she doesn't want any toys. There really isn't a single toy on her wish list except for the toys for Deezy!

Haven's top list is her Barnes and Noble wish list. She LOVES to read....we call her Matilda if you've ever seen that movie! So here are some books straight from her BN wish list:











There are science kits that she loves and wants:












She does want lots of clothes but I feel this is a task best left to mom as no one would ever figure out her size and needs. :)

Hopefully this helps!

Friday, December 3, 2010

Rare Disease Day 2011





Let's make sure we're heard this year!!!!! I will add photos of Haven to their site soon!

To read about Rare Disease Day click HERE

Thursday, December 2, 2010

IVIG needed


Miss Haven was in Oncology on November 15th and did her labs and had a full check up with her doctor and we were told that they wanted to see what her body was doing and that they would like for her to go until January 3rd before receiving her next treatment. Which sounded great to us.

Then the next day Haven started with a horrible cough which I had no idea what to do. She has never been sick and this was her first cough. Believe it or not - everything we have all been through with tumors, cancer, chemo, ROHHAD - I had no idea what to do now. We made her tea every night with honey, I would wake her up around 2am and give her another spoon of honey, and then more tea in the morning. We don't really like to give her medication when we don't have to.

That seemed to help for about 3 days then it started getting worse. So I bought every child's cough medicine they make and 4 different types of cough drops....nothing helped!

Then I got a call from Oncology that Haven's IgG level was too low and she needed to come in for IVIG. Which seemed to make sense to me - she's never been sick and no cough - 14 weeks without IVIG and now she's coughing - so she went in yesterday for her treatment.


I believe she read for about 3 hours - every book she could find. Then the hospital has bingo on the TV every Wednesday. So she played and WON! She decided she wanted the drawing desk and she had to leave before it was delivered so the nurses are holding it for her to pick up.

She still has the blisters on her face from the tape - we use Benadryl lotion every evening for that. Tomorrow will be a week since she had the study - can't believe how long these are staying this time. They usually go away after a couple of days.

Haven was asleep by 6pm last night and off to school this morning. Hopefully without falling asleep in class!

Wednesday, December 1, 2010

Haven at 6 months


PICT0127
Originally uploaded by bamboozleroo
Happened to find this video of her with Grandpa in Vegas. So cute.

Tuesday, November 30, 2010

Make A Child Smile - SOPHIA

This is our beautiful friend Sophia. We met Sophia shortly after Haven was diagnosed with ROHHAD and Ganglioneuroblastoma Cancer.

Sophia also has ROHHAD. She is supported by numerous medications each day and can barely make it in to school 2 - 3 days a week with all the doctor appointments she has.

Her mother, Maureen, has helped us out so much with Haven and my sanity that I want to help her daughter experience the joy Haven has had from Make A Child Smile. It's an awesome organization.

PLEASE SEND SOPHIA A NOTE TO LET HER KNOW YOU HEAR HER STORY AND YOU ARE THINKING AND PRAYING FOR HER.

She is truly an angel.

To get Sophia's story and address you can click her picture, click the Make A Child Smile link, or CLICK HERE!





We love you Sophia!!!

Monday, November 29, 2010

Tape allergies

Texting Grandpa Beard-off in Utah.


TAPE TAPE TAPE! We've learned over the years of chemo treatments and taping tubes to Haven that she is allergic to tape. We always have the special tape at sleep study and have never had this issue.....but she is swollen and covered in itchy bumps.

With ROHHAD she shouldn't have Benadryl before bed....so we got Benadryl lotion to put on that won't make her sleepy.

Comparing where the leads were and the tape we know this was the issue.

Hopefully with the lotion it will go away soon.

Sleep Study 11-26-10

The day after Thanksgiving Miss Haven was scheduled to go in to sleep study....which means a lot of driving for mom while dad stays up all night watching her. It's a 2 hour round trip drive and I do it twice each study - they have to be there at 8:30pm and have to be picked up at 5:30am.

To get ready for the study - if you've never had one - is about a 1 hour and 20 minute prep.

First they pretty much scrub her head, face, chest, and legs with this gritty stuff (see photo). It smells kind of like toothpaste but is very sandy. Then the chest and stomach straps are placed around her with the monitors hooked to that. Then she has both toes wired up for heart rate and oxygen levels. Once those are all in place and working they can start with the wires.

Here you can see Haven's chest strap and face wires. The wires are stuck to her with a glue and then taped on. Only problem - Haven is allergic to tape! Doesn't matter what tape it is...she is allergic to it.

After they wire up her face they wire up the head. The glue is horrible and I'm sure not at all comfortable to sleep with. I can't imagine if my child was not cooperative......say like some of my nieces and nephews!!! I can't imagine them sitting still for 1 1/2 hours while getting wires glued to them and then having to sleep with them on. Luckily my daughter is better than I would be at this.

As the night wears on you can see the happy child! This shows both straps and all the wires so far hooked up behind her. Haven did have extra wires this time due to the monitoring for seizure activity.

Finally the gluing has stopped and she is wrapped up and ready to lay down.

This is a sensor they put on her throat to monitor the snoring. Haven has had some pretty extreme snoring the past couple of months and even causing us to miss some sleep lately.

All of her colorful wires. They always let Haven pick which colors she wants to put on first.

And it's night night time


We are hoping for some good results from this study. This was the most Haven has ever slept at a study - she usually only sleeps 1 - 2 hours....this time she slept the entire time. She was also snoring with in 2 minutes of falling asleep and that stayed constant all night. Luckily they also video tape her during the sleep study as she was a crazy sleep walker (glad they have bars on the beds to keep her in). She was screaming so much and so loud the technician kept coming in asking if Haven was ok. Kris kept telling her yes that this is exactly what we've been waiting to show the doctors.

Saturday after we got home I gave Haven a long soaking shower to remove all the glue and tape residue but it didn't help. Still two days later she is blistered from the tape and has a bad rash on her face.

We won't have results for at least 2 weeks but am hopeful they can get to us sooner - we just have to wait for Neurology to look over her results first. Over this weekend she had us very concerned as each breath while sleeping also caused her chest to sink in pretty deep. We checked on her about every hour.