Friday, January 28, 2011

Johns Hopkins and Mix 106.5


This is Johns Hopkins....the ONLY hospital that would listen to us and actually helped us save our daughter.

In October 2007, Haven was rushed to Hopkins after suffering a 45 minute seizure. She saw at least 15 different specialists and went through numerous tests within a 10 day stay at the hospital. We had one doctor that said he would help and he's been with us since - Dr. David Cooke.

In December 2007, we were informed that our daughter had Neuroblastoma Cancer and there was a large tumor in her abdomen squeezing the two main arteries to the heart. She would have to undergo surgery. In February 2008, after weeks of MRIs, MIBG tests, and CT scans Haven was ready for surgery. Little did we know it was going to be a 14 hour surgery!

In the following weeks Haven had to regain strength in her lungs and prove to the doctors that she could get off the oxygen.

After a couple of weeks Haven returned home with us. A large scar from one side of her stomach to the other, two large holes in her lower back to withdrawal bone marrow, and a bandaid over the section in her spine where they withdrew spinal fluid. Still my baby had a smile on her face!

Little did we know what the next few years would have in store for us. We have practically lived at Hopkins (4 days a week) and she has gone through numerous trials of chemotherapy and to date 7 different surgeries.

Haven heading in to one of her surgeries. There have been so many I don't know which photo is for which surgery anymore.

Hopkins staff has always been great to Haven.....from the beginning she was allowed to give herself her own anesthesia. :)

Then we started all the chemotherapy. These can last up to 7 hours for each dose.

Haven after having another surgery. She really wanted a this was as good as it could get for a while.

After having eye surgery to correct her strabismus she remained in the hospital for about a week.

Haven heading in to another surgery to get a second port line added.

In June 2009, Haven began an intense therapy of High Dose Cyclophosphomide. This was to remove the bad immune system and give her a new one. As Hopkins calls it - Rebooting the Immune System.

Still my baby fought her way through it and continued on.

Her last surgery so far was in September 2009 - she had her 2n d port line removed. She is still continuing with treatments of IVIG every 6 weeks. I can guarantee we wouldn't have our daughter if it weren't for the care at Johns Hopkins and the doctors involved. I thank them all the time for giving me back my girl.

Then we filmed Mystery Diagnosis and I met a wonderful lady at Hopkins who also does their PR. She emailed a few weeks ago asking if we would do an interview at a local radio station for the Johns Hopkins annual radiothon. It is the same event I signed up to raise money for. Of course we said YES.

This is Haven at the CBS Radio studios in Baltimore.

We sat down with JoJo and Reagan from the Mix Morning Show and did our interview. We had a lot of fun and it was great to meet these two guys and to see what it looks like in the radio station. THANK YOU MIX 106.5 FOR SHARING OUR STORY AND LETTING US BE A PART OF THE RADIOTHON! of today......we are at 89% of our goal....what's going on everyone! I really thought 500 people at $1.00 a piece was an easy contribution to a hospital that helps so many kids. Not even kids that go to the hospital but from around the world!

I'm just going to point out that the first donation below came from a mom whose daughter also has ROHHAD and they live in SOUTH AFRICA!!! Will probably never go to Hopkins but still donated!!!

So I ask again - especially our FAMILY! We need your donations! This is the hospital that saved our little girl's's a tax write off and who doesn't need that!

Below are the very appreciated donations Johns Hopkins has received on behalf of Haven. PLEASE DONATE! If you never donated this is the time to do it.....if you want to donate but don't know how it's easy! CLICK THE GOAL COUNTER ABOVE! It's a direct link. Or click the DONATE NOW button at the top of the page!

Thank you to everyone above....we truly appreciate it!

Early Birthday

With all the snow we've had this week our plans were ruined for a birthday for Miss Haven. She wanted to go to the movies and dinner and had this whole big plan. Her backup plan was to go to Bob Evan's (one of her favorite places) and get a free birthday meal. Which is funny because I believe all her meals are free - she's never paid for them!

So we had about a 1 hour break in the major snow and took her there with her present. She wanted to open it at Bob Evans....why? We don't know - we just go along with what she wants.

Since it was a special day I told her she could pick out a desert and we would actually let her eat some of it! :) I thought she'd pick the apple pie or chocolate cake but no she really wanted the cherry bread loaf. So the ladies brought it to her with a candle in the center - she also got cherry hot chocolate.

We got home in time for more snow to hit and for Haven to have a lazy day on the couch with Deezy and her birthday gift. Now we don't have to argue over computers in the house....she has her own. Of course she had to immediately tell her Grandparents in Utah and within a couple of hours they were skyping. She loves it.

Thursday, January 27, 2011

Beautiful Snow

We had a beautiful snow day yesterday and this is the final product from the back deck. I love when it falls on the trees. So beautiful.

I believe final totals were 13 inches. Poor puppy can't get out to potty.

This is our neighbors back yard but I love the trees

And hoping to get out of the driveway soon.....It's 8:40 and they still haven't touched our streets.

Monday, January 24, 2011

18 Years/no diagnosis - until Haven's Mystery Diagnosis aired

A few days after Haven's episode aired I started receiving emails from people saying the watched the show and were happy to learn about Haven. One email hit me with a mystery diagnosis of her own that was finally solved with the show. Below is the email from the girl's mother:

Wow! Haven's mystery diagnosis story aired here in Florida about 2 hours ago, and I am just nicely able to stop crying and compose myself!

My daughter heather was born along with her twin brother on March 5, 1990. She was born happy and healthy and I have footage of her 2 years before all of this ROHHAD stuff took over our life, that I cannot even view, not even 18 years later!

She was this sweet and full of spirit young girl, and she and her twin brother were so fun to watch together! In September of 1992 we began to notice her appetite just went crazy!

Soon after she began to gain 15lbs-20lbs a month, and her stomach was very protruded. We lived in a small town where people couldn't wait to have something to talk about. People even wondered if she was somehow pregnant! That was the end of the line for me!
I too took her in to see a Dr., we did not have health insurance and the doctor wanted to run some ridiculously extensive and expensive tests! We took her home scared to death, that something was seriously wrong and we didn't have enough coverage to pay for the testing!

January came and she was still gaining weight, and she had this terrible snore/breathing pattern which really freaked us out. January 9th, 1993, we could not wake her from her night of sleep and her lips were blue! We took her into our Dr. and he sent us to Albany Medical Center via ambulance. Heather was fine while she was awake, but the moment she fell asleep, she de satted! They intubated her and we were in for 8 weeks of hell with all kinds of testing and temporary diagnosis. She actually had a reaction to all of the drugs she was being given which was mistaken for brain damage! They removed all of her tonsils, adenoids, and even her uvula. Then she was given a permanent trach! Diagnosis CCHS.

We knew she wasn't born with it, and the weight gain, none of the other children spoke of with this disease had the weight gain! Heather has been operated on several times for strabismus, and it comes back every time!

Finally all these years and a show watched due to the very fact that we somehow knew someone would be on there someday with Heather's actual symptoms!

God bless you all! We have yet to find a physician in the 2 years that we have lived here in Florida! I am hoping it will be someone who is at least familiar with the term!

I would love to hear from you! and thank you so much for having the courage to be able to do that!

Sincerely, angela

Thank you for contacting me Angela! I am truly honored to meet you and Heather and to be able to share her story. I can't believe you have looked for a diagnosis for 18 years.....but ROHHAD is a hard one to figure out!

Here are photos of Heather for our fans:

Heather with her twin brother --- cutie pies!!!

Heather with her brother right before the weight and changes began

As she got older the weight began to pile on.

Heather today (with her twin brother) at 21 years of age.

Saturday, January 22, 2011

Blog Updates

So I'm working on the new stuff for Haven's site that Blogger is offering. Just to mix it up a bit and give quicker links to find stuff. I've added a navigation bar under her main photo that will allow everyone to quick links of info rather than having to dig through. The main part of the blog will stay the same with constant updates - as the navigation bar may not have many updates because it will be facts and stories.

Also - just so everyone knows - I have moved the "Friends of Haven" section up as I have added updates and new friends to that section. I ask everyone to read about each of these children as they mean so much to us.

I've also received quite a few emails from people since the Mystery Diagnosis show aired.....I am excited to have all these emails and thankful for the uplifting messages. I also want to thank the long lost ROHHAD mom (who didn't even know she had a ROHHAD child until watching it and talking with her doctors). There will be more info on her and her 21 year old daughter. Yes - that's right....18 years of trying to get a diagnosis and now they have one!!!!!

Surprise Visit!

On Wednesday Miss Lauren came to visit Haven. We haven't seen Lauren since she moved to Hawaii last August. So it was a very nice surprise for Haven. She didn't know Lauren was coming over until after school (when Lauren was on her way). She was nervously excited. She saved all her homework to do with Lauren and they read three books together.

Then tonight (Saturday) Lauren came back to see Haven - after helping her mom's goat give birth to three babies. They got to read another book together and hang out. Haven was very sad when Lauren had to leave. But we're happy to hear that Lauren will be back this summer to hang out!

Wednesday, January 19, 2011

Cpap Class!

Luckily I had Monday as a holiday because the Peds at Home crew showed up to demonstrate how to use Haven's Cpap machine.

Since Haven's treatments with chemo she has done so remarkable that we are starting to have a "normal" life...whatever that means! :) But she is only regularly scheduled for hospital visits for IVIG every 6 weeks and then has her Endo and Pulm appts scattered throughout. Much better than 2009-2010 when she was at the hospital 4 days a week.

Meeting with her Pulmonary doctor last week was definitely good news. Talking with him - if Haven didn't have ROHHAD he would probably not put her on a cpap machine at all. Her numbers were within normal levels for him but with ROHHAD he just feels it's better to be preventative than reactive.

In 2006 we started going crazy wondering what was going on and then in 2007 ROHHAD and Cancer took over our life....everything we did was reactive. A symptom would pop up and we'd have to attack it with no time to think about what we were fighting and where to go after. Now that Haven is at a point where she is stable and we aren't chasing symptoms we're able to jump ahead of ROHHAD and kick it's butt where possible.

Tackling the Cpap machine:

In an effort to be preventative we have begun to work with Haven on a cpap machine. It is more like a testing phase for her than a necessity. Since she isn't having any major breathing issues and is showing no signs of central apnea at this point we all feel it's good to be precautionary.

A Cpap machine has a setting of 4 - 20. With that, 4 is the lowest it can go. Haven's machine is set at a 5. So just one point above the lowest setting. I am much happier knowing this!

  • For the first week Haven has been instructed to wear the mask (without oxygen) while watching TV for 15 minutes each night. Just to help her get used to feeling it on her face.
  • For the second week Haven has been instructed to wear it for 30 minutes with oxygen while watching TV. Again just to get her used to it.
  • The third week she is to wear the mask for 30 minutes while sleeping with oxygen.
  • The fourth week and so forth she is to wear the mask for 1 hour while sleeping with oxygen.

At most Haven will stay at 1 hour each night until her next sleep study. At that point they will monitor her to see if it is at all affecting her sleep. She definitely will not go on a full night sleeping with the cpap until all tests are done and we know it's not harming her. I've mentioned before that I am not a fan of the cpap and that I do believe it can cause harm with the ROHHAD kids if not watched very very close. Just my beliefs after speaking with a few other parents and her doctors.

Although Haven's breathing has definitely gotten better since the inhalers we are still moving forward with this. However, her dad and I are slowly having doubts that she even needs the cpap at all yet. But it's always better safe than sorry.

Once we start actually testing the machine at night I will update everyone on how she is handling it.

Flovent inhaler working! :)

Well....after having a couple of weeks since my initial meetings with Haven's doctors and getting in to fit her on the cpap we are feeling much more comfortable with Haven's recent sleep study and the results.

Since Haven's treatments (which you can read about to the right of the screen) she has changed drastically. Many of her symptoms regressed or went away entirely. Again telling us what we already felt and that we are happy with the decisions we made to go further with her chemo. But then we had a bad sleep study....right?

When I spoke with her doctors over the Christmas holidays I was definitely concerned that her sleep study had changed so drastically from only 8 months previously....but then I was reminded of a few areas:

1. This was the first sleep study EVER that we agreed she slept like she did at home. None of her other sleep studies really made sense to us since she barely slept.

2. January 3rd Haven had a chest xray showing a bronchial infection of some sort. She'd had a cough since November. Her pediatrician gave her an antibiotic to take for 5 days. It did help a little.

So maybe Haven has been the same throughout all the years but never really had a good sleep study. Plus she's never had a cold or cough in her life so this was new to us.

Haven did the PFT (Pulmonary Function Test) - first without an inhaler and the second try with the inhaler. This gives the Pulmonary doctor info as to whether or not her bronchial tubes are narrowed in due to inflammation or something - possibly like Asthma. Although we have been told she does not have Asthma.

Haven did test better AFTER the inhaler of Albuterol. So it was confirmed that she would take two different inhalers -

Flovent - which is a steroid to open the tubes and she will use this twice a day for one month. Then we will check to see if she is doing better.

Albuterol - just for emergencies - like if she is having a coughing fit at night or something.

So I'm fine with these - nothing major. My brother lived on an inhaler for years due to asthma so I understand them.

The doctor said it could take 3 weeks of Flovent to notice a difference.....

Medically I can't say there is a difference because I don't have her hooked up to a test each day but after one week Haven has minimal coughing during the night and is definitely feeling much better. We haven't had to use the Albuterol yet - which she is happy with because she says it tastes funny.

Now if we can just have a full night sleep - sleep walking is amazingly draining!!!

Thursday, January 13, 2011

Visit with Pulmonary

In November 2010, Miss Haven had her 1 millionth sleep study (well not millionth but it feels like it). This was the first time she's ever shown signs of anything. It was minor but enough changes to warrant the need to have her on a Cpap machine - at least to see if it even helps.

She met with the nurse and respiratory therapist to fit a few masks and to figure out which one she liked best. Her mask will only cover her nose - which is nice. The one in this picture is not the one she chose. She didn't like the way it touched the top of her lip and she didn't want to see the blue. We let her make the decision of which one was best for her.

Ultimately she chose this one. It is completely clear and fit perfectly on her nose. I told her it looked like she was heading in to space. She will need to wear this each night once she has built up a tolerance for it. Which I'll explain that in a few.

After being fitted for her cpap she had to have a Pulmonary Function Test. This is a great test to check many things - some are:

Air volume going in and out of the lungs
How fast the air can be moved in and out
How stiff the lungs and chest wall are

The first part of the test was just Haven doing it on her own without stimulation to the bronchial tubes. We were also looking for signs of asthma with her recent chest xray results.

Once she finished the first part of the testing she was given two puffs of Albuterol. Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness caused by lung diseases such as asthma and chronic obstructive pulmonary disease (COPD; a group of diseases that affect the lungs and airways).

Then she had to redo the tests again to see if there was any difference in her lungs.

Here is a video of Haven doing the second part of the testing. She did awesome.

Looks like a 2 year old scribbled on the computer but this was Haven's breathing results.

Ultimately it showed us that she is in the almost normal range...she was still low on her testing but not too bad. Then it showed us the difference the Albuterol made in her test - which was quite significant.

We ended up getting an inhaler - Flovent - which she will use twice a day. This is a steroid to open the lungs. We will use this for one month and see if there is any change.

Then we got another inhaler - Albuterol - which is only used as an emergency type inhaler. This is for the coughing attacks that she might have in the night - they can last for 2 hours at a time and she will sleep through it all but I can't!!! It will help with the wheezing as well.

The Cpap machine will be delivered tomorrow. We will start her off slow - as I'm not even sure I want to do this. Too many variables that no one knows about with ROHHAD and the breathing machines.

Initially she will use it while watching TV but without the machine hooked up. About 20 minutes a day - just to get the feel of the mask. Then we will move to hooking the machine up for about 20 minutes while awake and supervised. Then she will move in to sleeping with it for 20 minutes while we are awake and can check her. Pulse Ox machine is required to be used during this time as well. Slowly we will graduate to 1 hour. She will remain at 1 hour until her next sleep study is concluded and the tests have been read.

I am happy with this decision. I like taking it slow and if I see anything I don't like we can quit and call the doctor. Haven is happy with it too.

Next up is her ENT appointment to check her adenoids and tonsils - but with the statistics of it only helping 60 - 80% of the patients we're not really in to adding another surgery right now.

ROHHAD on Mystery Diagnosis

If you missed the show last night you can watch it on the internet by clicking the picture above!!!!

EDIT: ok - so they are only giving you 4 minutes.....I'm sure it will be on again

Wednesday, January 12, 2011

Mystery Diagnosis and Hopkins Children's Caring for Kids Fundraising

Tonight is the night!!!! Haven's episode of Mystery Diagnosis will air at 8pm find out what channel it's on in your area please look at the OWN web site and type in your zip code!

Well we're inching up to our goal!!!! Help us help Hopkins reach their goal of $20,000!!! Click the above picture to donate!!!!

Monday, January 10, 2011

Hopkins Children’s Caring for Kids

Well....Haven came to me the other night and asked me how we could help other kids that are sick like her at the hospital. I've tried to do the Foundation stuff and raise money that way but lawyers are needed and they like to be paid.

Suddenly this came across my email - Johns Hopkins Caring for Kids Fundraising. You create a page with Johns Hopkins and all donations go to helping the Children's Center at Hopkins. AMAZING!!! Then Haven asks me "What can $1.00 buy me?" Well my natural response was "nothing".....but wait a minute

So we signed up and our goal is to raise $500......really that's nothing! Haven has thousands of fans out there....all we need is for at least 500 of you to donate $1.00!!! I'm not asking for hundreds of dollars....just $1!

So what can $1.00 buy you - probably nothing.....but what can $1.00 from each of you do to help a child suffering from a life threatening illness's MAGIC!!

The donations to Hopkins Children Center are donations so YES you can write them off your taxes. A receipt will be emailed that will include your confirmation of donation and donation amount.

Below is what our donation page looks like. If you click on the picture it will take you to the donation link. All you need to do is click "SUPPORT ME" and it will take you to the form to donate.

We really hope all of you will join us in our fundraising goal for Johns Hopkins Children's Center.

A few updates

Finally got some appointments finalized for Haven.

January 13th she will go in to Pulmonary and be fitted for a cpap machine. I am still very leary about this and not sure this is what we want to do but it is definitely better than the alternative. We will then meet with the people from Kennedy Krieger Institute to make sure she is comfortable with the mask and equipment. After that we will set up our sleep study to ensure the proper fit and pressure. Her doctor says we may have to do multiple studies at first to make sure everything is working properly.

February 1st Haven will go in to see ENT to measure her adenoids and tonsils and discuss surgery to remove them. We did talk with Oncology about it and our concerns of surgery - he seemed to be ok with the decision of ENT says it needs to be done. However, we will make the final decision.

Another update on the attorney trying to sue us under Haven's name for $3,100......all of Haven's medical equipment. Well he has been put on hold for one month thanks to our case manager. I tell you, if you have a child with a serious illness you need a case manager!!! I know I wouldnt' have gotten the answers she has. So I'm waiting to hear back that this is all cleared up. We have enough medical bills that we don't need this. I also wanted it cleared up before we had to get more equipment!!!

More to come...........................

Tuesday, January 4, 2011

ROHHAD on Mystery Diagnosis and OWN (Oprah Winfrey Network)

Mystery Diagnosis
Trapped Inside Their Bodies
January 12th - 8pm EST

Will the bizarre growths on 17-year-old Matt's body eventually leave him trapped in a second skeleton? When two-year-old Haven starts to gain weight at a shocking rate, her parents have no idea it will spiral into a battle for her life.


At the end of September 2010 we had the privilege of having the producers and film crew of Mystery Diagnosis come out to film us and our daughter. Her episode is finally set to air on January 12th.

What will this be about? It is all about Haven and the pain and heartache it took us to get a diagnosis for her symptoms.

One day we filmed at Johns Hopkins Hospital with one of Haven's very involved doctors, Dr. David Cooke, Pediatric Endocrine doctor. Another day was at a studio and then we did a day of filming at our house.

Once the show airs I will describe the work and hours that went in to making a 30 minute segment for TV. Let's just say we aren't signing up to act anytime soon!

We really hope everyone watches it. If you don't know - Oprah Winfrey has her OWN network and Mystery Diagnosis is now on there. To find out what channel it is on in your area click on the picture of the channel finder above. It is a direct link to the section to plug in your zip code.

Haven specific segment is on January 12th at 8pm. You will learn about us and what we went through, Haven and what she has gone through up until her diagnosis, and even more important you will learn about ROHHAD.

We have a lot of ROHHAD friends now - well considering when you start you have none we now have 28 families around the world. I would've loved to have been allowed to mention all my ROHHAD families out there on TV - we want to let our voices be heard and let others know we are here. We hope this helps and we hope it helps another family on the tough road to diagnose their child. we're super excited.....I'll keep everyone updated! And my dear ROHHAD friends in Australia and South Africa ---- we'll make sure you get to see it!

Monday, January 3, 2011

Welcome 2011 and IVIG

Yes it is a brand new year and I'm telling myself to be positive that it will be a GREAT year. We definitely have a lot of exciting stuff happening this year.

We definitely rang in the new year with a bang.....I was asleep by 10! :) Doesn't mean miss Haven let me sleep for too long but I did try.

We did finish the year with two great movies - Gulliver's Travels and TRON. Haven really enjoyed them but liked Gulliver's Travels more. We had a wonderful Korean New Years dinner at Grandma and Grandpa's house.

Haven was scheduled to go in for her chemo boost on January 3rd. She's had a pretty good cough since the beginning of November that seemed to taper with her last dose of IVIG. But it came back right at the holidays. So we were anxious to get in to Oncology - especially after talking with Pulmonary and her pediatrician during the holidays.

This is a photo of Haven's port while it is being accessed for chemo. She has had this cath-o-port since her first surgery in Feb. 2008. She had two ports at one time and thankfully the Hickman line was removed (which was the other side of her chest). She was a bit sad to miss the first day back to school - she couldn't wait to get in and see Mrs. Petz and her friends. Plus the constant reminder to get her birthday invitations ready this coming weekend.

These are the "tubies" that connect in to her port to give her the medicine.

As you can see to the right of the photo - Haven won a prize yesterday from one of the nurses. She used a thermometer under her tongue for the first time EVER! So this was a major deal. She usually has it put under her arm. Why she can go through multiple surgeries, tests, scans, chemo and not be able to put it under her tongue is the Haven mystery, as she would say.

Haven also had a chest x-ray which we are waiting to hear if anything comes of it. At this point it's been almost 24 hours so I doubt anything is wrong. We have a prescription for her from her doctor but we are waiting a few days to see if the IVIG helps. Her Oncologist says this isn't how IVIG works but as parents we noticed a difference on the last dose. She did sleep ALL night last night - first time in 3 weeks. So if it is IVIG then I like IVIG because I get to sleep!

We also have an appointment set up with the ENT on February 1st. I'm still waiting for the call back from Pulmonary to have Haven fitted for a cpap. At least as a temporary check. We want to do 2 weeks to see if there is any improvement - if not then we will discuss discontinuing this with her doctors.

We hope everyone had a safe and happy new year! Bring on 2011