Where I've Been in 34 Years

1. Hong Kong, China


2. Innsbruck, Austria


3. Schweinfurt, Germany


4. Cabo San Lucas, Mexico


5. Flagstaff, AZ, USA


6. Aliso Viejo, CA, USA


7. Joshua Tree National Park, CA, USA


8. Colorado Springs, CO, USA


9. Moab, UT, USA


10. St. George, UT, USA

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• Travel Info at TripAdvisor

What's wrong here.........

I am very frustrated and angry and all in one totally helplessly reliant on research articles which really tell me nothing except that this whatever it is just straight out sucks. I have been looking at places for assitance - my daughter is listed with a seriously life threatening disease that could easily KILL her. But since I make more than $21,000 a year and she's not really dead yet I do not qualify. So if I make $22,000 a year with a family of 3 and only one parent work at that salary we should be good to go!

How life threatening does your child have to be to get help? Does my child need to be on a vent to get help? NOPE....because that doesn't really matter. Mason is on a vent 15 hours a day and was turned down for home nurse help because HE'S NOT ON VENT 24 HOURS A DAY! His mom works and dad is required to be with him during the day...so dad can't even work. I'm going to assume they make more than $21,000 a year so a double wammy - because honestly you can't have a family of 4 on that salary. Well, I guess we could if we all went on wellfare. I work and dad stays with Haven. So maybe we should all just quit our jobs once we find out our children are sick and could possibly live because then someone will give us assistance.

But then really what is living? Does living mean spending 75% of your childhood in a hospital, having no friends, not going to school, be stared at constantly by very rude adults who should know better. I remember riding my hot wheels and playing in the dirt and going swimming in the ocean. My daughter can't "play" --- because her breathing goes crazy and heart rate increases so high that she is worn out within 2 minutes and has to sit and sleep for a while.

We sold the Wii because she couldn't play it anymore - it made her too tired. Last night I asked her how she slept the night before. She gets mad when we ask because she says we know better than she does. So I rephrased it: How did you feel when you woke up? She sits for a minute and says: Mom, how come when I wake up in the morning I'm really tired?

A life threatening disease is more than just the disease. It's the no sleep, constant 24 hour worry, the possible infections a common cold could bring, the multiple doctor visits, the multiple doctor visits with no answers, the mulitple doctor visits that produce more questions....the fact that we have a disease no one knows anything about.

So I decided to stop researching ROHHAD and go on with the breakdown of each thing Haven has been diagnosed with to see where that gets me:
Neuroblastoma Cancer
Paraneoplastic Syndrome
Hypothalamic Dysfunction
Nocturnal Myoclonus
Autonomic Dysregulation
Rapid Onset Obesity

I will also keep checking in to the other areas where we originally thought Haven was headed: Pheocromocytoma
Cushing's Syndrome

Because maybe this is where other people have started and found out something new. I am also researching under LO-CHS/HD -- because there is a lot more info there than ROHHAD in google and other listings.

Vicki - Leigh Ann's mom - has been a crucial part of my research. She has over 15 years of experience with this horrible disease. Even though Leigh Ann passed away in 1998 she has still cared for all our children and has been constantly researching as to what took her daughter from her.

My lone mom in Europe -- awesome information -- sometimes way over my head and it takes me a couple of weeks to research everything she's talking about. But she has given me things I need to question from our doctors as well.

Julie - Mason's mom - she is my backbone....she is my constant support. She even admits she lets me do the research but I get something more important - a super duper friend and someone that makes me laugh even though we're fighting this endless battle.

I just can't believe our system works the way it does and for me to get help I must quit my job or my child must be about ready to die.

What Can We Do???

Well - I figured I better use my lunch break to update or get some thoughts out because I know by 7pm tonight I will want to be asleep. We're exhausted....this is tiring and draining. I can't even explain it - only someone who is or has gone through all this can understand. We go insane with worry and we can't think about anything else. I can't believe how many doctors we talk to constantly. We meet every evening to compare notes after Haven is asleep and review any happenings or changes we've noticed.

Honestly, I don't need a doctor to tell me Haven isn't doing well. We can see it. She is not getting better and we can't see any changes for the good. We can absolutely see where they are getting worse. I talked to Haven's doctor yesterday and I couldn't even be upset. I just told him "this is wrong and this is worse and i don't know what to do anymore".

I know there is no cure for ROHHAD and currently there isn't even a treatment to start with. So we're just shooting in the dark. The chemo she has been on has not made a difference for the good. She still has 2 weeks left before they will discuss changing chemo treatments. To me - if it hasn't happened in 6 weeks it won't happen in 8 weeks.

We feel like "this is it - we can't do anymore" but then we look at Haven and this can't be it. This can't be all we can do. Haven is at the hospital a minimum of 3 to 4 days a week - EVERY WEEK. We administer chemo two times a day. Her blood pressure has slowly been creeping up but we keep giving her the blood meds. We're selling as much as we can to help pay for things - even collectibles I got when I was Haven's age! I have no need for them now - she needs it more than I need a doll or something.

She has gained almost 10 pounds in a month. I'm tired of people looking and staring at her. She doesn't want to go anywhere because she sees kids looking at her. She looked at herself in a floor length mirror for the first time and was asking about her scars because she hasn't seen them before. Her chest is constantly bruised because her port is accessed so much. She is taking 4 naps a day and we consider sleeping at night a nap now. She's up every 2 or 3 hours - so it's not really sleeping.

We have :

Orthopedic Surgeon tomorrow for her spine
Ultrasound for her legs Feb. 24
Eye surgery March 26
Blood gas check on March 26
Every other day visits for blood levels

Waiting on sleep clinic call back
Surgeon for the tumor in her back should be calling for an appointment

And in all of this I haven't reminded the Oncology team that we need the next MRI to check the Neuroblastoma tumor in her abdomen. I think we could sleep for a week.

I am thankful for all our friends that send us encouraging notes and to the world who send Haven cards and letters every day.

Meeting with Dr. Cooper

Well we had a GREAT meeting with Haven's Pediatrician, Dr. Cooper on Wednesday before the holiday. We spent about 2 hours with her - amazing how fast time flies when you have so much to talk about. Really I didn't know what we were going to do at this meeting and I didn't know where to start. But once we started talking it was easy.

We received A LOT of information and copies of recent articles written by other doctors about Haven's syndrome.

We received official copies of Haven's medical records with our latest meetings of doctors. We also received her last sleep study report. I found out things I didn't know just last Wednesday. No one had told us some of this stuff. So I'm a bit shocked.

The next few posts are very much like going to med school...or at least I feel like I'm back in undergrad classes! Read it if you would like - it helps me to put things down and do a cross comparison. It's like making a list and checking it twice.

I can't believe what we didn't know or were in denial of. Thank you Dr. Cooper for all your help and thank you to Nurse Peggy for hanging out with Haven for 2 hours and playing with her!

A Diagnosis.....we were not ready

I just found this on the Internet today and it seems to have been written in the early Spring of 2008. It is all about Haven. The doctor on the front is Haven's Endocrinologist - Dr. Cooke. Dr. Ido Paz-Priel is Haven's Oncologist.

If you would like a copy of the article please email me and I can send you a PDF. It seems as though they actually had her condition figured out last Spring but we were not aware yet.

A link to the article on the web: CLICK HERE
Haven's article is on page 4

Taking Charge....

So - there are two ways we can do this.



1. We can sit back and go down with the ship

or

2. We can get off our butts and fight



This past summer I went down fast with the ship and ended up with an almost severe mental breakdown and was in the hospital for a possible heart attack. After Monday's meeting and being depressed for almost two days I decided I do not have time or energy for that and Haven needs everything I can put in to this.



There are only about 27 cases of this disease known. That's not thousands or even hundreds - just 27!



Yesterday I did a lot of research on this syndrome they are saying Haven has. I won't say it yet because I personally don't believe she has it. What I know about it:



1. Weight increases rapidly around age 2 (Haven gained 25 lbs at age 2.4 and another 12 lbs at age 2.8)

2. Hypothalamic Dysfunction around age 3 (Haven lost a lot of natural functions around age 3 - had her 2nd MRI after her 3rd birthday)

3. Immune issues around age 3.5 (Haven's immune system started attacking her brain around age 3.5)

4. Hypoventilation problems around age 6 (Haven has had sleep studies and they were not too off but were off a little)

5. Fatigue

6. Decreased sensitivity to pain - this is weird and we've always told doctors about this - she does not feel pain and can withstand multiple needs put in her veins all over her body.



What Haven doesn't have

1. Growth issues - although she has not grown any since Nov. 2007 - we believe this is due to the high level of steroids she is taking

2. Adrenal failure - Haven's kidneys are fine

3. Hair and skin changes - we believe due to chemo and steroids

4. Cold extremeties - Haven was actually was fine before surgery. She now has one really hot foot and one really cold foot.

I have finally found another mom that has a child with the same "diagnosis" as Haven. I emailed her and heard back from her this morning. I'm excited to talk to her. She sent me her phone number and I hope to connect with her this week to compare notes.

Doctor visit

HI

I have decided not to do an update from yesterday's meeting with the doctor. We did not receive very good news at all and until it sinks in and we understand a little more I will not throw it out for everyone. The doctor is going to call me sometime this week to make sure we are ok and if I have any questions.

Currently I am not sure if we need to search for a new hospital or just take what they give us.

Hospitals I am looking to contact are:
UCLA
Ceders-Sinai
St. Jude

As I am not about to take responsibility for my emotions at this time I will stop. Someone has to know something about all this and how to handle it.

I hope everyone has a great week. I will try to have an update by the end of the week.

Thank you all for your love and support of our little girl.
:)
M