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!
Friday, October 16, 2009
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!!!!
Migraines
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!!!
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
Saturday, April 25, 2009
Where I've Been in 34 Years
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 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.
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.
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.
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.
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