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