Thursday, December 17, 2009


Reflecting back on a horrible month! this is 3 days after surgery

This was 2 weeks after surgery. We removed the stitches and had to adjust the pin since I kicked it further in to my foot.

This is one month after surgery. We removed the pin about 1 minute after this photo. This is at the 4 week mark. Stitches area has healed up nicely. Foot looks like a zombie foot.

Finally - The pin is out and 24 hours later I was allowed to shower! It was the best shower I've taken in a very long time!
Walking is still a challenge and I am not supposed to do much on it yet. She wants me in sneakers full time by January 15th.
Thank you to my mom for taking me to my appointments and holding my hand while the doc pulled the pin out.

Tuesday, December 8, 2009

S.W.A.N - Syndromes Without A Name

I was doing a survey for NIH and at the end it had two links where you can go for help. One of them was for genetics testing - which so far this is not genetics. The other was for SWAN - Syndromes Without A Name. I went to their site and it's very cool. I immediately joined up and found them on Facebook so I could stay up to date.

Even though we have a diagnosis or whatever it is - I think this is a great place for us mom's to join and check out. After all - a syndrome is just a big group of symptoms.

Our doctors told us before - they don't care what everyone wants to call the syndrome - they can call it Haven's Syndrome if they want. The most important thing is to stop her from progressing and give her a long life.

Tuesday, December 1, 2009

Jacked up

Today was horrible. Well it actually started a couple days ago and then last night I was up almost all night with severe pains in my big toe. The nail has been burning cold and feels like a knife is stuck in it. Burning cold is a feeling like I have IcyHot on me. Then it's so numb on the top that I can't feel when I touch my toe. I was extremely worried that there was an infection.
So I got in to the doctor today and we were unwrapping to get the stitches out. I described my pain to her and when we got to the pin gauze it was covered in blood. Which it shouldn't be at this point. She looked at me with that doctor look and said I had pushed the pin in to my foot. I probably did it with one of my many falls - who knows. But this is why it was hurting my nail.
Before I could even think she grabbed the pin and started pulling and wriggling it. All I could do was hold my breath and cover my eyes. It hurt and hurt and hurt. Then she snipped the ends of the stitches and pulled it through from top to bottom....that burned! I've never had stitches before and everyone always said they didn't hurt - but these did!
So I took some massive pain pills and passed out for a long time. My toe is still in pain but she said it should calm down by morning.
Official pin removal date: December 15th!!!
I'm excited to get the pin out and at the same time I'm terrfied. I'm going to be awake and have to see it. Gives me the willies just thinking about it.

Wednesday, November 25, 2009


Hope everyone has a great Thanksgiving.

Everyone on Facebook has been doing their daily things they are thankful I made a list of some...but not all....

1. my sudden decision to move to CA at 21 with no family, meet some boy and get married - without this I wouldn't have my Haven.

2. Johns Hopkins - without their knowledge and skills I probably would've lost my baby.

3. Kris - taking care of Haven 24/7 for the past 2 years and if he wouldn't have been able to take over 100 days off this year and get Haven to the hospital I may not have my baby.

4. ROHHAD moms - without the strength of these mom's and the shared stories of their children I probably would've succumb to a mental breakdown.

5. Friends, Family, and Strangers who have taken the time to learn about my daughter, her illnesses and have stopped for a few minutes and sent me encouraging words or letters to my daughter.

6. The company I work for - without their understanding I would've missed the most precious moments with my daughter that I could never get back.

7. Child foundations - without many of these we may not have been able to get through the past 2 years - Casey Cares, Matt's Helpers Foundation, Make-A-Wish, Believe In Tomorrow, Make A Child Smile

8. Family for giving everything they could to Haven - paying for over a year of Lauren to be with Haven twice a week, working with home nurse to get a grant for Haven, custom made clothing, coming out to spend time with Haven and making her laugh, taking Haven when we need to get errands done....just everything

9. I'm very thankful I do not have to drive anywhere for the holidays - instead I only have to walk about 20 feet and get some yummy food.

10. Thankful my mom has made 2 turkeys and 1 ham this my dad won't whine that everyone takes all the leftovers and he doesn't get any.

There are a million more......

Monday, November 23, 2009


I'm done with the confinement of the couch and elevated foot! I have fallen at least one time every day since surgery. Yesterday was the worst. Trying to go to the bathroom is HORRIBLE! I took one hop in to the bathroom and BAM was on the floor. I was caught by my knee on my good leg --- today it has a huge black and blue bruise! Not to mention trying to pull your pants up while balancing on one leg and knowing a tub is on one side of you waiting for you to fall in!

This morning I woke up in a lot of pain but it wasn't the normal areas. Usually the pin is the most painful area and the area between the big toe and 2nd toe - that's where she cut away the "soft tissue". Today it's the side of the foot that had nothing done to it. I pulled the gauze up a little bit so Kris could take a peek and his face was enough. He said it's practically black from bruising.

I haven't had a pain pill since last Thursday but I took one today and am waiting for it to kick in. Kris requires that I do not open the computer for the first few hours of the pill. I wrote an email to Haven's doctors while loaded on meds and the doctor told Kris he didn't know how to respond. So I will sleep.......

Nikkideez comes this week - we will go to my mom and dad's on Turkey day. They are cleared to see Haven that day.

I got some get well cards from my aunt Candy and Grandma today --- that was very nice! I'm so used to Haven getting mail I gave them to her and she said they were for me.

I'm also selling some stuff on Ebay and am excited to do so. You can pick a charity that you want to donate a percent of your earnings to. I checked and one of our favorites was on there. Casey Cares Foundation. I was looking for Matt's Helpers Foundation but they were not on there. So right now 10% of my ebay goes to Casey Cares!

Casey Cares sends Haven tickets to parks and concerts, we've received restaurant gift cards, Halloween t-shirts, and an awesome Casey Cares t-shirt.

Matt's Helpers has been there from the beginning too. They have sent us money, gift cards, and gifts for Haven. Just recently they sent us $200 in gas cards. THESE ARE AWESOME! Kris is the only one that uses these. The only place he goes is Hopkins so one tank of gas lasts him 2 - 3 weeks. So these cards will last a few months.


Saturday, November 21, 2009


Post from NORD web site:

Official U.S. Rare Disease Day Website to Launch Soon

As the sponsor of Rare Disease Day in the U.S., NORD has created a website where activities and events for Rare Disease Day 2010 will be posted. Watch for the launch of this new site soon.

Friday, November 20, 2009

ROHHAD - Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation Neural Tumor

When my daughter was diagnosed with ROHHAD I was adamantly opposed to the diagnosis and I got pretty pissed off when I was told. Because only 30 children in the WORLD had this and how could my daughter have it. I called many hospitals asking for information (UCLA, Ceder Sinai, Mayo Clinic, St. Jude.....) and none of them had heard of this disease. I checked NORD and GARD and nothing. Finally I found another child, Josh Wooten, and contacted his mother for more info. Then I found a comment written on Vanessa's site from Julie, Mason's mom. She emailed me and we began to talk.

I really felt lost and alone with this new diagnosis. I couldn't find anything on the internet about ROHHAD and the top hospitals I called couldn't help me. There was only one group of doctors that had done any research. I read the research paper over and over and created a spreadsheet listing the exact symptoms and ages the doctors had noted. I wanted to compare for myself all of the symptoms that Haven had. I looked through Haven's books where I made my own notes. Once I filled this out I sat in disbelief that my daughter could have such a terrifying disease and no where to go.

Below is the spreadsheet.


ROHHAD Symptoms


I probably would've gone insane if I hadn't met these two moms. It was only a couple months later that another mom found me. This was Maureen, Sophia's mom.

At this point my daughter's Pediatrician also found many articles written about ROHHAD and another reasearch paper from some doctors in France. They noted 6 children with ROHHAD also had Ganglioneuroblastoma Cancer and that this tumor comes with ROHHAD. After I saw this I checked the spreadsheet and 1/3 of the patients in this compilation had the same tumor. But a rebuttal stated that the tumor should not be the ultimate decision in diagnosing ROHHAD as a child could be misdiagnosed and have fatal consequences. So instead of ROHHADNET it has remained ROHHAD.

Now I have been told that there is some disbelief that my daughter even has ROHHAD because she is not on a trach and has not stopped breathing. I call this BS and a big load of it. As noted to the doctors in France to not only look for a tumor to diagnose I don't believe you should only look for Hypoventilation to diagnose. Especially when it would seem that Hypoventilation doesn't usually occur until between ages 6-8 years old. That would mean I would've had to ignore my daughters symptoms for another year to two years. At that point it could and probably would have been too late and my daughter may not be with me.

IF we were to only be looking at children with Hypoventilation and on a trach why call the disease ROHHAD? Why not call it Hypoventilation Syndrome?

I do not believe you should say a child doesn't have a syndrome because they do not have one specific symptom when they exhibit a majority of the symptoms in the proper age range. So with the tumor - no a child shouldn't be discredited because they don't have a tumor or that would mean only 6 of these children REALLY have ROHHAD. And you shouldn't say only children on a trach have ROHHAD because that would be throwing out all of the other above symptoms. AND my daughter hasn't even reached the proposed age at when Hypoventilation should happen.....nor am I willing to wait for it to happen.


Now rather than discredit me, my child, or our doctors I say you give me a little credit for bringing this unknown disease to the public eye as best that I can!

Thursday, November 19, 2009

Visit to doctor

well I had my visit to the doctor. And YES my foot is that swollen! We've had ice on it round the clock and still it's swollen.

We took two xrays. I think Kris enjoyed looking at the before and after xrays - you could see where she cut the bone and moved it and then pinned it.

The pin sticking out the side goes from where you see it to the bottom of the upper knuckle of the big toe. Hence the reason I couldn't bend it. She put a lot more gauze around it this time because I was feeling it too much before.

There are about 15 stitches on the upper part of the foot that she will remove on December 1st.

The pin will be removed in about 4 weeks.

I have been ordered to not put any pressure on it at all until she looks at it again and lets me know. So guess what....I came home and took a nap then got up and fell on my butt! But I saved my foot!!!!


Foot surgery

Well this is all I have for now......

Surgery was Monday at 8:30am. I met with the anesthesiologist right before and she told me a few things I wasn't expecting and I wanted to cancel surgery right there!
First the anesthesia was going to be so light she said I might wake up during the surgery! WHAT??? I don't want to know anything about it.

Then the doctor came in to go over what she was going to do again. She cut two bones in my right foot and grinded down another bone. Then pinned them together. One of my pins is sticking out of my foot by 3/4 of an inch. It sticks out the side.

Well I did. The first time I woke up I could hear the doctor grinding on one of the bones in my foot. I started yelling that I could hear her and I didn't want to. So they knocked me back out then I woke up again and instantly was crying. I could feel her pulling the skin on my foot apart. I didn't want to feel that. I heard the nurse say "don't cry" and then I was out again. The third time I woke up I was over it. Instantly started asking if we were done yet because I was tired of laying there. Well they were, they were just wrapping me up.

There was essentially no recovery because I was in and out so much during the surgery. They went over a few things with me which I couldn't remember - at least Kris had talked to the doctor.

Monday I slept the rest of the day and cried most of it. The pain was so intense and the Darvocet was doing nothing. I practiced breathing and mind over pain instead. I think I finally passed out around 3am from pain.

Tuesday the pain was much better - still hurting a lot. I have been using Haven's wheelchair instead of the crutches. It's just too hard in the house.

Wednesday was all about pain where the main part of surgery was. The bone on the outside, the bone between my big toe and middle toe, and the pin sticking out the side of my foot. Didn't matter what position I was in it hurt. I didn't get to sleep lastnight until around 4:30am only to have Haven yelling to wake up at 6am.

Today is the same as yesterday. I can't get a good position. I woke up with a major allergy issue of my eye. I had this for a couple of weeks before surgery but it started to go away. I think surgery has taken my entire body to heal which has left my eye open for infection. I called my doctor this morning and she called in an antibiotic for me. Now I'm guzzling orange juice and vitamins. I have to be healed completely 100% by January 25th!

This afternoon I go back to the podiatrist and she is going to unwrap the foot to look at it, clean it off, and rewrap it. Look for some cool pics later!!!! I can't wait to see my foot. It makes you crazy not being able to see what's going on. Kris looked at my toes yesterday and they were extremely swollen and turning black/blue. I want to know what is burning at my heel.

Love to all.......

Sunday, November 15, 2009

Prepping for Surgery day is being spent prepping for surgery. Everyone seems a bit concerned about laundry, food, and house cleaning after my surgery. So I'm overdoing the laundry to make sure everyone has clothes, going grocery shopping, and cleaning.

Cleaning is not going so well since everything is cute to Haven and required that we must keep. So I'm probably going to leave the pink room as it is. Everytime I grab something she wants to know why that has to be thrown away. UUUGGG....

Tomorrow at 8:30 am I will have surgery. I'm quite a bit nervous. Not about the surgery but not being able to walk for a while. That scares me more than the surgery. I did get my new pain meds. The doctor originally prescribed Percocet - which I did realize was Oxycodone. I can't take that because it makes me feel like bugs are on me and very itchy. So it was changed to Darvocet.

It's a beautiful day today and Haven has homework that requires her to be outside. So we're going to do that while I'm still able to walk.

I asked Haven if she was going to help take care of me and she said sure as long as she wasn't busy with her crafts and school work. :) Yea, she loves me.

Tuesday, November 10, 2009


I can't handle the pain and suffering from families and having no where to turn because no one knows about us. We don't have an organization or a foundation to turn to. I feel I must try to find a way to begin a non-profit organization or a foundation to help our families. I know MANY ROHHAD families now and have talked to quite a few mom's. Desperate to save their child and not even understand what they are trying to save them from.


Many of us spend the first year being told by doctors that what ever it is it is the fault of the parents. We lose this time trying to diagnose our child and we lose key areas needed for our child to function.

Shelby lived in Arizona....she is 7 years old. She traveled to California in hopes of help and was diagnosed with ROHHAD but the doctors didn't know anything. Now they have moved to Illinois in hope of something with Dr. Weese-Mayer and her team. Shelby's insurance is almost out and they have no where left to turn.

Nikki spent almost an entire year in the hospital away from her family.

Sophia has had pneumonia 5 times this year and more and more symptoms are popping up and the family is left defensless against stopping her from slowly getting worse.

Mason is testing medication in hopes of helping him be able to breathe on his own again

Haven has spent two years trying different chemos in hopes of stopping the disease and offering hope for other families

Josh is living with a vent and pacer to help him breathe and lead a normal life

Denika is has been forced to leave her home to stay in a hospital away from her family in hopes of saving her

Noreen is constantly fighting infections and her condition worsens as time goes on

There are more families than even listed above. We only have 40 - 50 of us in the ENTIRE world. How do you get anyone to listen to a such a small group?

Are we supposed to sit here and let our children slip away because no one knows about our disease. Everytime I go to bed at night I stress that Haven may not wake up in the morning. I don't want her sleep walking to stop - if I can hear her screaming or talking or walking around I at least know she's breathing.

I'm asking for help from anyone who may know how to start an organization that can help our children. Should I have a web site created? Should I have a forum? Do I need an attorney that I can't afford because I just spent $2,300 on medical expenses from the past few months?

There are two more girls about to go on a trach/vent to breathe....age 5 and 7.........where do we go?

Wednesday, November 4, 2009

Revimmune or Rebooting the Immune System

Well this is what we did this summer with Haven. It's a fairly new process and is being used in aplastic anemia and MS patients. With the evidence that ROHHAD is an autoimmune disease Hopkins felt this would be one of the best options for Haven. Since then I have found articles written on Revimmune. I didn't know that word existed until I typed in to google "high dose cyclophosphomide". It is very interesting to read about. I have a few areas that were most impressive to me.

Revimmune therapy consists of an ultra-high intensity, short-course, intravenous formulation of cyclophosphamide. It is believed that Revimmune "reboots" a patient's immune system, thereby typically eliminating the autoimmunity. The "rebooting" process is achieved because Revimmune eliminates the cells causing the autoimmunity and spares the stem cells in the bone marrow. These surviving stem cells are then able to repopulate a restored, uncompromised immune system.

The HiCy 1-time regimen used in the current study has been shown to be safe and effective in autoimmune diseases, including lupus erythematosus, autoimmune aplastic anemia, and myasthenia gravis.

The regimen, which was developed about 15 years ago by Robert Brodsky, MD, and Richard Jones, MD, hematologists at Johns Hopkins, works by eliminating the "misbehaving" immune system while preserving hematopoietic stem cells, allowing the immune system to "recreate itself from scratch."

And then during my random searches I found this in a forum - from 2006:

I am, like you, very interested in high dose cytoxan. However, rather than pursuing the route of receiving one infusion per month over a five or six month period, I am interested in the "Revimmune", or "HiCY" protocol, now in clinical trial at Johns Hopkins. This protocol is basically the same dose of cytoxan that one would receive as conditioning for a bone marrow transplant. Over a four day period, you receive enough cyotxan to completely ablate, or wipe out, your peripheral immune system. Then, when your white blood cell counts bottom out to undetectable levels, you are given injections of Neupogen which cause your bone marrow to go into overdrive producing new white blood cells. They call it "re-booting" the immune system. The protocol has had spectacular results in a number of autoimmune diseases, like aplastic anemia, Lupus, multiple sclerosis, sarcoidosis and CIDP. The protocol has produced long-term remissions. You can Google Revimmune to research more. This treatment seeks to eradicate the autoimmunity, rather than "manage" or suppress it. For people with severe disease particularly those who are younger, and who are finding modest results with immunosuppresion or IVIG, it makes complete sense to me. Obviously, it has risks and it is not a "natural" treatment. You lose your hair, etc. But I, like you, am young. I'm 46, and am very disabled. I once was extremely fit, and was an expert snow skier.

The issue right now is that Hopkins has narrowed their focus to completing the next phase of a clinical trial for Revimmune to treat multiple sclerosis. Thus, I believe it will be difficult to obtain this treatment "off-trial" for a disease like CIDP for at least another year.

There are many articles out there about Revimmune.....I am actually excited that Hopkins approved Haven for this and we actually saw results.

And yes there is even a web site called:


So with my scan below I decided to try the chiropractor and MAYBE it would help with my migraines. I met with her and told her everything I didn't like and what I didn't want done. Which she was very understanding and followed my orders pretty well.

The first visit we did xrays and I found out that I'm only phase 1 - if you've been there for 4 phases. My issues are with the last vertebrate of the lower spine L5 I think - well it's squished where the sciatic nerve is. There is a very small curve of scoliosis in the middle but she said nothing of much concern. Then there is a bad area in my neck between the C3-C4. That the C4 is being pushed out by the C3 and it is squishing the nerve there which could be a cause of my headaches. At this visit she only did minor stuff to my neck to prepare me. They guess that I need at least 50 sessions to be at complete.

Then I went for the 2nd visit and she really cracked up my back that time. She's pretty tiny so at one point she was laying on me while I was twisted. It sounds really bad but it felt good to get that pop. Only thing is the cracking of my neck gave me a headache this time - OR it could've been the electricity they put through my body. I am not a fan of this. She also did some stretching and stuff with me that my body was not happy about.

Today I went again but this time it was a guy. They didn't tell me I'd see a guy. I really only went because I had talked to the girl. Now I'm not sure if I will go if he can do it whenever. I felt really awkward with the guy. He immediately did the electricity but he didn't put it on my shoulders instead he put it below my belt line and the center of my back. I was defiinitely more tense with him doing it than the girl.

When I go back on Friday I will probably tell her if she can't do it then I don't want to come in. The good thing is that in 3 visits I do feel better and my back is not hurting half as bad. I feel much looser and it's not bugging as much to turn my head. I just don't know if I can have the guy twisting me around.

Wednesday, October 28, 2009

Surface sEMG

Anyone ever had one of these done? We had a health fair at work today and they did this on me. The chiropractor on site said I had too much stress and muscle tension and that I needed to see a chiropractor. It was very interesting!

The one on the left is a normal person and the one on the right is mine.

Monday, October 26, 2009

Shape Ups

So I've really been wanting them but when you have a kid you don't find the money to spend on yourself when there are probably 50 things they need instead - but not really - you just think they need.

I keep talking about these shoes and that with my broken foot I wanted to try a different type of shoe. So I came home to a gift from Haven and Daddy! thank you

They are the new Shape Ups from Skechers. They come with a DVD and book and all this crazy stuff. But like a man I did not read the directions or watch the DVD. I immediately put them on and did every errand I could think of - groceries, house cleaning, walmart, get the idea. After about 4 hours my legs were dead! Last night I laid in bed in pain until finally falling asleep around 1:30am. I've had very bad insomniac issues lately.

I am wearing them again today but did take a minute to read the book. It says to start out at 30 minutes a day wearing them until you are used to them! No wonder my bad foot feels like it has a bruise on the outer bone. It also helps me realize I walk ridiculous....I always walk on the outside of my foot because my inside is broked! These shoes don't like that.

So all in all, I really really like them. They are extra squishy and I grow about 3 inches when I put them on! :)

Tuesday, October 20, 2009

Melanoma - Skin Cancer

Yes I know they are the same thing but some people don't.

My sister is home and recovering from surgery. Above picture is one of the incisions they did to remove the cancer. The other incision is under her arm where they removed the lymph node. She is doing pretty well and enjoying her meds. She will go back to the hospital on the 29th for more testing and radiation. Hopefully they have stopped it.

Glad you're home Weeliz!

Sleep walking.....

Well my plan was to get a lot done this weekend but that was foiled by an insane sleepwalker. The last time we were locked up on a high dose treatment Haven spent a total of 5 weeks sleep walking. We even had to zip her in to a bed while at the hospital. Well this time is no different.

My shift is the weekends because I work all week. Haven drained me this weekend. Friday I took some video of her talking crazy. I missed the good stuff but got her yelling at me. That's always funny. But when I climbed in bed it was only the beginning.

Friday I was up until 2:30 am with her screaming and constantly sitting up in the bed throwing her arms and legs around.

Saturday I was up until 4:30am (never a small sleeping break) and she was crazy. She was screaming and yelling at everyone. A few times she yelled for her sister Kendall. She just kept yelling "KENDALL" but never said anything with it. Then she was talking about Disney and what she's going to do there. She talked about her friend Mason and why he wants to go to a farm instead of Disney and that she is not going to a farm. (I'll have to share that story). She was mad a me because I wasn't looking where she wanted me to look.

Then at 3:00 am I heard a noise that sounded funny. I waited and then I heard stomping feet and jumping. Miss Haven was running all over the place. I grabbed her and calmed her down. Then had her sit on the floor while I fixed her bed and changed her. Got her back in bed only to have more yelling. Then at 4:00 am she was up and running again!

Needless to say I spent Sunday with a migraine and slept half the day away. Kris did the night shift and she had him up at 3:00 with the same craziness. I hope these next few weeks go by fast so we can start sleepin again!

Sunday, October 18, 2009

Foot surgery

Well earlier this week I went to the doctor and scheduled my surgery. I didn't realize I would have multiple doctor appointments just to have surgery.

November 3 - size pre-op papers and review pain medications!
November 3 - crutch training at physical therapy - did you know they have an obstacle course that you have to pass on the crutches before you can have the surgery!

November 5 - physical to confirm I am ok for surgery and more blood work....yea so excited!

November 16 - surgery. They will cut the bone in 2 places, re-align it, and then re-pin it back together - I watched a video of the procedure so I now know what happens. It's not really "breaking" the foot.

I'm not allowed to put any pressure on the foot for the first week and then once I go back in to see her to remove the stitches she will show me how to start working on light pressure.

So sounds like a great Thanksgiving this year!!!!!

Home from surgery

Well my sister is home. I've talked to her a couple of times. She had a pretty good size incision on the top of her shoulder. They were able to remove everything that was found. Then with the radiation and testing over the past couple of weeks they found a lymph node that the cancer had spread to.

They did a large incision under her arm (in the pit area) and took out the lymph node and part of the muscle at the ribs where it was connected. She will go back to the doctor on the 29th to be retested to see if there is any more cancer in the body and to remove her stitches.

She is doing pretty well considering and has enough medication to keep her looped for a few weeks.

Friday, October 16, 2009

Sister's Surgery

I received a text from my sister around 11am today that she was at the hospital. They did a bit more radiation, shot her up with dye and waited. About 30 minutes later they got the results back and one of her lymph nodes had lit up showing that the cancer had spread. She would need an incision at that point that would be about 3 inches long to get the lymph node out. They would also cut out all the surface cancer which reached about 1/4 inch down in to her skin.

Around 6:45 pm I received a text that she was now in recovery. At 7:30 pm I would guess that she woke back up because I got another text that she was feeling good and loaded up with Morphine and Percocet. Her husband Mike is with her. I'm not sure yet if she will be going home tonight or not. I get a text about every 40 I'm guessing she is passing in and out.

Sister's Surgery

thank you everyone for writing to me about my sister. This is her with her daughter Selena.
Over the past couple of weeks she has had scans and had a small bout with radiation to prepare. She is headed in to surgery today and hopefully I will be able to talk to her tonight.

PS: yes I did ask her if she was the nightlight for the kids after her radiation! :) Hey you gotta laugh when you can.

Love ya weeliz!

Finally find a doctor

This isn't about Haven - really - but in a way it is. I have had insane migraines for the past few years - after having surgery in 2001 to get rid of them.

Well I had given up on doctors after going through 5 different ones. I talked with Haven's pediatrician Dr. Cooper and she urged me to go and see her husband who is an Internist. Well....I had my doubts but I scheduled the appointment and met with this nurse practitioner. I went in with a list of items needing fix but two items were the high priority...migraine and my right foot.

All the other doctors had given me Percocet, Oxycotin, and Morphine....all I ever wanted was Midrin. Well NP Kathy found the generic form of Midrin and was able to get it prescribed to me!

FINALLY!!! She also put me on Nortryptilin - which is a pill I take each night to help in keeping the migraines away. She also felt I would be good on this since my blood pressure has gone up a bit from the usual. It was listed in Prehypertension.....which is extremely odd for me since I'm usually below low. We did a lower dose so my BP wouldn't drop too much. We also did a bunch of blood work to check my liver, kidneys, sugar, thyroid, and anemia. I'll get those back by next Friday.

How does this help Haven???? Well I've had a constant migraine for the past 2 weeks and as soon as I'd get home from work I'd go straight to sleep. Well this entire weekend I have been able to hang out and play with Haven. So nice.....

Thank you to both doctor Cooper's and NP Kathy....I finally found a doctor!

My Sister Wendy

I just want to share my sister and her family. Wendy and Mike were stationed in Hawaii for the past four years and this past May they moved to San Diego. She has a great California look.... My sister and Mike have been married for at least 100 years it seems like and he's been stationed in Iraq four times since having their first child, Mike.

My sister recently enjoyed turning 31 years old. I haven't seen my sister in 5 years. Last I saw her Haven was about 2 months old.

They now have 3 beautiful children: Mike (10), Selena (8), and Kristana (5).
My sister just found out today that she has cancer and will be seeing her Oncologist on September 14th. I would just like to ask that all those who pray and think about Haven throw my sister in there. Her family needs her and so do we!
EDIT: My sister has been diagnosed with Melanoma - I honestly didn't really know what that was or how bad it was. I think I hear it all the time on commercials. But if you click on the word Melanoma above you will get a full definition of this cancer. It is the most dangerous of skin cancers. She did have a hard lump removed from her shoulder - it was sent to 2 different labs and both came back with the same diagnosis. She is now going in to have her lymphnodes tested and an MIBG to check to see if it has spread to other organs.
Love you lots Wendy!!!!


So what gives me a 4 day migraine!!! Seeing the medical bills this weekend does it! This is the stack of medical bills this past 4 months. Thanks to Kris for the wonderful pic.
We were able to use the money from an earlier fundraiser to pay the first quarter and will use the money raised from Haven's benefit ride for these. Its amazing how fast they can pile up. But being away from home for so long just overloaded the mailman! Maybe they should save a few trees and stop sending them!!!

thanks Dad and Jeannie

Just a huge thank you for your help over the past year with giving us Lauren and now helping with the BMT housing. I honestly can say we'd never be able to pay for the BMT housing and everything else. I was informed yesterday that you paid them on Monday and that is huge.
thank you so much!

Wednesday, April 1, 2009

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 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.

Wednesday, February 11, 2009

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.