Vet, Pulmonary, Therapist, Oncology, Endocrine and Child Life

Well I definitely made great use of my day off work yesterday. Only one of the above in the title did not belong to Haven! :) Deezy had to be spayed yesterday. She is recovering well and Haven has been hand feeding her...SPOILED!

After taking Deezy to the vet at 7:30am we headed to the hospital. We started our day with Pulmonary and reviewing Haven's latest sleep study and setting up our follow-up appts.

PULMONARY: sleep study - my main concern is Haven's CO2 levels

• February 2009 - CO2 level at 49 - was told that jumping to 50 would take a lot and they didn't expect it.
• July - September 2009 - Hi CY treatments and Isolation
  
• August 2009 - CO2 level at 50 - doctor said he will start being concerned at 55 and she will be watched closely.
• October 2009 - HD Dex and IVIG
  
• March 2010 - CO2 level DROPS to 45 - doctor extremely happy and not expected. 35 - 45 is normal!

Pulmonary agrees and is doing more research on sleep instability linked to respiratory syndromes. Possible theory is that her sleep walking kicks in when she has a good length of pausing in her breathing. This could be keeping her levels at a normal level and may be why we are seeing an increase in sleep walking coinciding with a lower CO2. Who knows....but it's a good theory. I honestly don't mind sleep walking because I know she's breathing - I can hear her yelling!

THERAPIST: Honestly this may be good for some but I'm just not sure it fits in with us right now. Haven has no anxiety about doctors, needles, procedures. She's been doing this since age 2. Maybe it would've been better in the beginning but I'm not sure where it will help her now. The only issue Haven has is leaving the house but once she's out she's fine. I don't think trying to treat her like a "normal kid" at this point will be beneficial....the girl is already too adultlike.

ONCOLOGY: Received a call from them regarding Haven's MRI.

• Brain: clear and perfect --- as with all of her Brain MRIs - no tumors and anything out of place
• Abdomen: tumor still present but has not changed shape or size. Very stable and will be monitored as usual.
• Pelvis: perfect nothing out of the ordinary and nothing new showing up

IVIG is coming up and another round of immune testing. We are currently working on getting Haven in to school. There are a lot of factors here.

ENDOCRINE: This was our 6 month follow-up visit and through emails we had discussed other tests I wanted to run.

• May 2009 - Haven had no growth. She hadn't grown in 1 1/2 years. She was a negative on the growth scale and was about 38 inches tall.
• July - Sept 2009 - HI CY treatments
• September 2009 - Haven shows growth potential - grew to 39 1/2 inches tall - no growth hormone shots and testing again in December
• October 2009 - HD Dex and IVIG
• December 2009 - Growth hormone tested - show an increase
• March 2010 - Haven has GROWN now to a solid 43 inches tall!!!!

I had discussed doing Cushing's testing again - after talking with the doctor - Haven has shown tremendous growth and this isn't usually the case in a Cushing's child. She also didn't have the red striae noted on Cushing's patients. Doctor again said IF I really want to do the testing he will order the salivary cortisol testing and if I really wanted he would do the other tests but it requires a lot from Haven and there really isn't any evidence leaning towards Cushings. So I have decided not to test and will review again in 6 months.

Prolactin - seeing the brain MRI showing no tumor present at the Pituitary tells him it just confirms the mis-communication between hypothalamus and pituitary. He will be concerned on this hormone around age 9. Until then they will keep monitoring.

Leptin/Adiponectin - As we can guess - Haven will have a high Leptin level - she's obese. But even is she is Adiponectin deficient there is nothing that can be done at this time. To run the testing would just be for the books and nothing done with it. So we will let this go for a while.

Brain Stem - I wanted to discuss this but Endo doesn't work with the brain stem and was unable to answer my questions. He is consulting with a Neurologist for me and possibly will set up a meeting with Neuro at some point. But as he said - if there is nothing Neuro can do about it and can't fix it then it's probably not beneficial to have them on the appt list when they can just review her results in the system.

CARDIOLOGY: Happy to report!!!!

• Before all of our treatments Haven had been on BP medication for 2 years --- she was taken off in September 2009 --- BP has stayed around 109/65 and no medication!!!!!!!
• Before all of our treatments Haven's resting heart rate range was 140 - 165 ---- she is now consistently staying between 80 - 90!

CHILD LIFE: We're working on getting Haven in to school a few hours a day and with her currently home school teacher joining her. This will help her slowly get in to the rhythm of school and not overwhelm her. There is a lot going on here first before we finalize everything.


As you can see I am very happy! I'm very proud of Haven for kicking butt the last 4 years and I'm very thankful to our doctors for fighting to do these treatments for her and now we're actually seeing some results! I'm looking forward to our 1 year mark and hopefully a full immune system! :)

Love to all -----

IVIG and Immune testing

While I'm still waiting for results to come back from Haven's sleep study and MRI I did receive a phone call from her Oncology nurse that her IGG levels have dropped down to low and she will need to come in for a dose of IVIG. I can't get in to what an IGG is....way too complicated but it's the immune system. :)

The IVIG dose usually runs 6 - 7 hours - depending on how her body wants to react to it. Sometimes she's good and can take a faster drip and sometimes she needs to take it slow.

Haven also failed her immune test done in February. It takes at least 6 weeks to get this test back. This is, however, what the doctors expected as she is only at 9 months since Hi CY.

We will be at Hopkins all day Monday. We will first visit with her therapist at 11am and then at 1:30pm head to Endocrine for the 6 month follow up. I have a few questions for him and want to review some theories so it should be a good visit.

I figure if I don't get results from him on Monday for both tests then I'll start calling around again. Even if a test is good I think some one should call and say so.

Fighting for Life

This is my baby in her Moroccan dress she picked out at Disney!


I love to share my baby's story with the world in hopes of learning more about her cancer and ROHHAD and in hopes of helping other families going through similar situations with their children. But what I want to share with everyone tonight is a few other kids that are near and dear to my heart. They are constantly in my head - I feel the pain their families are going through and I can see the fight for life in these children.

Every day is a struggle and every day is another worry of what might happen to our children. These children have taught me so much and have become part of my family. There are so many children out there that just can't enjoy being a child. These children are very important to me and we have grown together over the years.

Many of these children have their own web sites but may not be known to most of Haven's fans. I like to take time sharing them with you and letting you learn about them.

ROHHAD children do not have a foundation to go to for support - we are our support system. You are our support system. Some of these children do not have ROHHAD but have cancer and other illnesses but they have a strong fight for life.

We aren't asking for money or charity events - we only ask that you learn about our kids and see life the way we see it and more importantly the way they see it. Some are able to go to school and some get to go when not sick. A small cold with sniffles should be easy but our kids end up in an intensive care unit and stay locked up for weeks at a time. Those in school miss weeks at a time - maybe attending only half a year total.

When you look at our children's sites it gives us strength to keep up the fight. It gives us hope and let's us know you care. Your comments are welcome and encouraged. You may think it doesn't mean much but it means a lot to us.


ROHHAD does have a support group on Facebook and I urge you to check it out and join! You don't have to have ROHHAD to join and you don't have to have ROHHAD to offer suggestions. Believe me - we're so consumed by this disease that we might be missing something. Please join in the conversation - give us some homework - make us think! We are missing steps here - we feel like there is a piece of the puzzle missing and maybe you know what it is! The moms look at the members and you can't imagine how much you joining our site reinforces our fight!

I will add the links soon to the children's pages with little updates - many you have seen before and some are new to our family! We love them all and couldn't do this without each other to cheer us on.


As my dear friend Scottie says keep "Living The Dream!"

Random Photos

I realize I need to stop using multiple cameras and multiple memory cards.....it's not working with photo organization!


Haven and her dad playing with their RC truck....pretty much driving the dog crazy...

Deezy.....she's not spoiled at all!

The 2nd blizzard - my mom shoveling the sidewalk!

My dad trekking back from the shed with the shovels....why keep the shovels in the shed when you have warning a blizzard is coming!

Mom coming back to life after falling in to the snow trying to clean the heating unit!

Little Deezy......


My baby girl this evening! Her hair is growing like crazy!

Unanswered

It's amazing that there are still parts that we have no clue or reason why they are that way in Haven. I ask and am told "we don't know" or "it's not our field" or "we're not sure with ROHHAD".

But we have constant sleep studies - and I guarantee her last one shows nothing! It was the best night sleep she's ever had.

I constantly ask - what can we do about her sleep walking - it's crazy. She is a crazy girl. So bad they caged her up at night in isolation - she even scared a few of the nurses with her screams and trying to jump out of her bed.

So I look and look - here's the best reason so far I can find or hear someone say:

WHAT CAUSES SLEEP INSTABILITY?

In chronic sleepwalkers, respiratory syndromes are the most frequently diagnosed accompanying disorders. As a result of the close relation between abnormal retention of carbon dioxide in the blood (a condition known as hypercapnia) and activation of neurons within the brain stem that control sleep and waking, an inability to breathe normally affects neural control of the progression through sleep. Specific respiratory syndromes, including upper airway resistance syndrome, mild obstructive sleep apnea, and sleep-disordered breathing, have been diagnosed as underlying causes of sleep instability. Through CAP analysis of chronic sleepwalkers, researchers have learned that the basic nREM instability accompanying the breathing disorder is present even on nights when no sleepwalking occurs. But the instability almost always completely vanishes when the respiratory problem is successfully treated, usually through the delivery of air to the upper respiratory tract through a specially designed mask (continuous positive airway pressure, or CPAP), or through surgery.

Kennedy Krieger Institute

Well, Oncology will be very happy. I have rescheduled Haven's visit to KKI.

Our Mission: We at the Kennedy Krieger Institute dedicate ourselves to helping children and adolescents with disorders of the brain, spinal cord and musculoskeletal system achieve their potential and participate as fully as possible in family, school and community life.

KKI is recognized for its range of services in areas including autism, cerebral palsy, spina bifida, neurorehabilitation and feeding disorders.

We went in 2008 at the request of Oncology to get an overall evaluation of Haven developmentally and to check her motor skills. One of our concerns with Haven initially was the possibility of Opsoclonus/Myoclonus. This was dismissed after all our testing and observations of Haven.

This time at the request of Oncology we will be getting Haven signed up with a Behavioral Therapist. 99% of Haven's disease is brain related and they will be able to start an initial marker on Haven which through appointments will let us know if there is any regression - which sometimes happens to ROHHAD children.

Another reason we are going is because Haven only knows hospitals and doctors. All of her memories are being in a hospital hooked up to chemo, prepping for surgeries, or long meeting with doctors that use big words. She has never had a childhood like a normal child. She doesn't even know how to play. She doesn't understand other kids. She doesn't understand why other kids don't have a port! Her therapist will be able to talk to her and us and help us with helping her mind grow at home. To give us help we need for her at home.

I scheduled our appointment on March 22nd. We'll go there at 11am and it will take about 2 hours. Then we will have our meeting with Endocrine after that. It will be a long and tiring day for Haven. I'll probably be holding her as best as I can while she nods off. She usually needs a nap by 2pm and takes about a 3 hour nap every day.

I'm interested in seeing what they say about her this time. I had a rough time there the first time but I was also in a different mindset and not a big fan of doctors. I have an open mind this time.

As for now, Haven is enjoying her homeschooling and not being at doctors.

Doctors....not all bad

About 75% of Haven's life has been in doctors offices and hospitals. Over the years we've been through a lot of doctors - some bad, some good, and some that are truly lifesavers. I get upset with doctors and when we first came to MD I was every doctors enemy. I didn't trust any of them even if I had just met them.

CA was horrible. We spent 2 years wasted on doctors and hospitals. Constant blaming of us for our daughter's issues and constant dismissal of symptoms. This made me hold a grudge against ALL doctors.

Moving to MD was probably the best decision I made to save my baby. We've lived at Hopkins for over 2 years now and we've made it through some rough patches with doctors and diagnosis. I've had many arguments and disagreements with our doctors in the beginning and it was hard to take what they were telling me.

But now I can't tell you how much I respect our doctors and how much gratitude I have for them. I can honestly say without these doctors I probably wouldn't have my baby with me. I probably would've lost her and never knew why.

There are major players in Haven's life who have kept her alive and fighting and have helped me along the way.

Dr. Cooke - Endo - he has been there from day 1 when Haven was rushed to Hopkins from Upper Chesapeake. He didn't give up and tested her for everything. He listened to what we had dealt with prior in CA and he broke it all down. He found her Ganglioneuroblastoma Tumor and ultimately diagnosed her ROHHAD by putting all the pieces together.

Dr. Paz-Priel - Oncology - he's been with us since December 2007 when we were first informed that Haven had cancer and a large tumor in her abdomen. He has been the best doctor I could ever hope for. He is always there when I need someone to listen to some wacked out theory I have or to listen to all the notes I take on Haven. He watches the videos I send him. If it weren't for his aggressive attack on her cancer and ROHHAD I wouldn't be here showing the world my baby and her improvements. He has never given up on Haven and has fought through many doubts on her treatments. Seriously I could never thank him enough.

Dr. Price - Surgeon - well....without him and his knowledge of these tumors and surgical skills I could've lost my baby in February 2008 when she underwent a 14 hour surgery. He has been there when I need him and for anything I have questions about. He is the only surgeon I would ever let dig deep in to my baby. He watches for Haven and when we see him at the hospital he always stops to say hi to her. Amazing!

Dr. Cooper - Pediatrician - she has been there for more than just Haven. She has been there to help us out as parents. She has collected articles written by other doctors for me that I can't get because I'm not a medical professional. She has helped us get Haven the appointments that are difficult with specialists. She's even helped me get in to doctors!

There are people that will never see Haven again that I'm thankful for their honesty - Upper Chesapeake. They stabilized Haven during her seizure and did a CT scan...ultimately came out and were honest and said "We can't help you - we're calling Hopkins". I am so happy they didn't just try to guess and openly admitted they didn't know.

It took me a long time to trust in a doctor with my baby and now I can't imagine not having them in her life and watching over her. I am very happy they put up with my cockamamie theories and my many emails.....most at that level wouldn't even pay attention. And believe me, I email them a lot!

MRI

Haven did great at MRI today!

We were very happy because Dr. Greenberg was her anesthesiologist - he's done a few of her surgeries and knows her very well. They were having a party in there telling jokes and even singing.....another great change to our baby!

Haven told the doctor that she takes a 1" needle in her port and that she would need the mask first but that she's wasn't little anymore so she didn't need to make it smell good. She took her jacket and shoes off and placed them at the foot of the bed. Informed the doctor that she had to be laying down before the meds were given - requested a blanket and off she went.

She came through without any breathing issues and was out of recovery in 30 minutes! Our quickest yet. Her throat was really sore from the tube being down it so as promised -she got to share a green milkshake from McD's with dad!

She did awesome!

Sleep Study

My baby girl waiting to go in to her sleep study room. She was already on the verge of cranky and it was past bedtime before they brought her in to wire her up.

Haven does not like change.....she gets upset if it's a different nurse in Oncology, she gets upset if blood isn't drawn the same way every time and she got very upset that a girl wasn't doing her sleep study. Then he made her get in the chair instead of letting her lay down while he put the wires on. She was not happy and I had to keep warning her to keep her comments to herself. She just really didn't want to do the study last night.


Here she is almost all wired up. They added a few new things to the study. The disc on her throat is for snoring - we've never had that before.



Here is my girl around 10:30pm. Took over an hour to wire her up and she was quick to get the dark circles around her eyes. When they start turning red I know we need to get to bed quick.


Here we are at 5:30am.....even after a sleep with wires she still tries to smile for the pictures.

I'm gonna guess this sleep study was worthless. The tech said it was very uneventful and dad said it was the best sleep she's had in months. So either I need to put wires on her every night or I have to continue to video tape her sleep to prove I'm not a crazy mom. Well I'm crazy but she's still sleeping walking and going crazy every night! The dog won't even go down the hall after she goes to bed because Haven freaks her out. Then the tech kept coming in every time she'd start to fall asleep or start snoring.

Anyway, even if she didn't do the sleep walking hopefully we know what her CO2 is at.

Tomorrow we will leave around 5:30am to head to Hopkins for her MRI. We let Haven have a desert tonight for doing TOO well at sleep study and because she can't eat tomorrow until around 2pm after MRI.

Any results we'll let every one know!

Hi CY Year - 2009 - Rebooting the Immune System

Well it took me a bit longer to do 2009 --- Age 5 - 6 but it is finally done! This was a long year and definitely the most intense year of treatments so far.

We love our baby and it has taken a lot to put these years together - it's hard to see what our life has become and what is now normal to us.

Enjoy

AGE 5 - 6 YEARS OLD

Sleep study and MRI

We are ready!

Spoke with Pat at Mt. Washington Sleep Lab and we're all set to go. They have Haven's room ready so we'll be there by 8pm Saturday evening. Pat said she'd missed us because it's been 6 months - I had to reschedule this appt a few times.

Confirmed with MRI today for Haven's appointment on Monday. We have to be there at 7am. They have promised that it IS in her files to use her PORT ONLY for the IV. I better not see a bunch of needle holes and cables wrapped around a leg or arm when she comes out. I already know they will intubate her during the procedure. This is going to be a 4 1/2 hour MRI which is too long for her to be under anesthesia without assistance. So I have promised them that I will not argue about it as long as they don't threaten to automatically keep her overnight!

And they have Haven listed as a "Frequent Flyer" in her records at MRI. So I'm wondering if after so many hours does she get a free MRI????

We also have an Endocrine appointment this month on March 22nd. I'm excited to get in there to talk with him. Oncology never talks to us about Haven's growth hormone or prolactin or anything like that because it's not their deal - it's Endo. Plus I want to discuss my many random theories. Plus my MRI request was for the head and particularly the pituitary area so he'll be able to discuss that with us.

After that it's another trip to Pulmonary and our normal Oncology visit! I have to set Pulmonary up after the sleep study.

Just a year ago....

While I have been going through photos and photos Haven for 2009 I was reminded of this post I did in January 2009! It's still very exciting to me and I'm so happy they listened to my email request and read the info I sent to them!

ROHHAD: Genetic and Rare Diseases (GARD) Information Center

I AM BEYOND EXCITED!!!!!!

I have emailed NORD, ORD, GARD, and ORPHA regarding the syndrome ROHHAD. As none of these had a listing for ROHHAD and all of these are organizations for rare diseases. I would like to share an exciting email I received back from GARD today!

Summarized version of the French study on ROHHAD vs. ROHHADNET

Dear Ms. Fowler,

You recently submitted an online e-mail to the Genetic and Rare Diseases (GARD) Information Center about ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation). You mentioned that your 4-year-old daughter has been diagnosed with ganglioneuroblastoma cancer and ROHHAD. After conducting research on your own and consulting with your daughter's physicians, you have come to find that there is very limited information available about this diagnosis. You wrote to us to request that we add ROHHAD to the ORD list of rare diseases.

We wish to thank you for bringing this condition to our attention and in response to your email, we have created an online question and answer page on this topic. If you'd like to view this information, we invite you to visit the links listed below.

Visit the link to view a Q&A about ROHHAD. CLICK HERE!!!

Visit the following link to view resources related to this condition. CLICK HERE!!!

THANK YOU FOR LISTENING!!!!

Hypothalamus, Pons, Medulla Oblongata - Oh My

Well last Friday I was a bit upset as I was feeling too much of a stall in trying to figure Haven out and with no where else to look. It drove me crazy all weekend. I just couldn't break the funk even by Monday I was still going crazy.

I had been looking at the brain and checking it out and remembering stuff from school. Most of the terms were familiar to me and I knew the location of each spot I just didn't really know how it functioned. So I took some pictures and drew on them and "dissected" them on paper. The brain is a ridiculously awesome organ and there are so many facets to the brain. But with ROHHAD I knew it was a big part of the Hypothalamus and the Brainstem (Pons and Medulla Oblongata) that were the focus. I started researching different symptoms of Haven's ROHHAD (as it is different onset for each child) and where each piece came from in these two sections of the brain.

After a while it hit me - make another spreadsheet and drive Oncology crazy! So I did and I wrote up a detailed email - well as detailed as a non-medical person can be. I emailed it over to him around 11pm last night. I didn't expect him to answer although he has many times before at that time at night. Even while I was in Honduras he was emailing back to me after 10pm. His response was that he was quite impressed and would need time to review my email and spreadsheet.

That was all I needed to hear. It's probably my fault as I have left Oncology alone for a while and let them do their thing. We've only discussed school and Kennedy Krieger Institute through emails but nothing particularly pertaining to Haven's ROHHAD. Well I ended up staying up until 1am emailing him and researching more and more info.

What I am sharing below is just ramblings from my mind about what I feel with Haven's ROHHAD and her treatments for the past two years. This is nothing relating or professionally done by a medical person. But it does help them because I know with 100's of kids they don't have dedicated time to always spend it researching my baby. I've sent graphs and spreadsheets throughout the years and many have come in good use. It can never hurt.

What is the Hypothalamus?

• a portion of the brain that contains a number of small nuclei with a variety of functions. One of the most important functions of the hypothalamus is to link the nervous system to the endocrine system via the pituitary gland

How big is the Hypothalamus? About the size of an almond!

Can you believe something so small in your body can take over so many functions of your body? Obviously it is not shaped like an almond but for my demonstration it is. It is also not positioned like an almond but in simple terms it's easier to discuss. I broke it down in to 6 categories - but it breaks down in to many more depending on how far you want to go but this is just the overall and how it relates to Haven.

1. Anterior Medial:

• Urine Output
• Heart rate
• Blood pressure
• Thermoregulation
• Panting
• Sweating
• TSH - Thyroid Stimulating Hormone
• Circadian Rhythm
• Vasopressin - water absorbtion, sodium levels, glucose

2. Anterior Lateral:

• Thirst
• Hunger

3. Tuberal Medial:

• GI Tract
• Satiety
• Neuroendocrine (including NE tumors)
• GHRH - Growth Hormone
  
• Dopamine (release of Prolactin)
  

4. Tuberal Lateral:

• Thirst
  
• Hunger
  

5. Posterior Medial:

• Memory
• Pupillary dilation
  
• Shivering
• Blood pressure
  

6. Posterior Lateral:

• Hunger (when stimulated causes extreme desire to eat)
  

Then you have the brain stem. The main two areas I'm focusing on are the Pons and the Medulla Oblongata.

7. Pons

• Pain sensors
• Tears
• Saliva
• Facial expressions
• Eye movement

8. Medulla Oblongata

• Breathing
• Heart
• Blood pressure

After putting this together I was able to see that Haven had damage in 1, 2, 3, 4, 6, and 7. Then we of course did what we feel we needed to do for our child to give her a chance to kick this disease in the butt and hopefully not progress any further. We experimented with the immune system and tried many different chemotherapy treatments. We did low dose chemo, at home chemo, steroids, and high dose chemo and high dose steroids.

Although at the time I was frustrated because I expected to see a miracle immediately and it has been slow going. I can now say that after almost a year since Hi CY - living in the isolation housing seems like it was a dream - I can now see everything that has changed in Haven.

Where do I see the change? Position 1 and 3 of the Hypothalamus. My baby is now back to being potty trained, her heart rate is at a normal rate, her blood pressure is stable and she hasn't been on medication for 6 months, the hot foot/cold foot has a much less difference in temp, she doesn't just sit and sweat anymore, sodium levels are NORMAL! :) She hasn't had normal sodium levels in at least 2 years.

GI Tract - she has minimal constipation and is not on medication anymore for this. Growth hormone was gone for 1 1/2 years - she just stopped growing - now she has grown almost 4 inches since July 2009. We are still fighting Prolactin - but I will keep trying to figure this one out.

With the brain stem - I now know the Pons was the first to go on Haven and the first I ever saw signs of ROHHAD at age 1 with no pain sensors and no tears.

I am hopeful that this is the end of Haven's deterioration. We continue to scan and monitor and run labs, as well as, me keeping records and journals of Haven's changes. But as her immune system starts to come back in to full gear I am excited to see what we will notice in another 6 months. But there is no guarantee anything will stay as is with this unknown disease.

Next appts

Haven went to Oncology on Friday. They were very excited to see her. I bought her a new outfit to wear and she was decked out in black and hot pink - even socks and shoes matched! She was very excited to go in and see everyone. I put her port lotion on before she left so that by the time they got there her chest would be numb. Not like it matters for pain but she can feel the pressure and I think it just gives her some comfort when seeing that needle come towards her chest. To relieve my stress and anxiety - I do not know Haven's numbers anymore. I am usually informed if something is out of the ordinary or I get a report from Haven's pediatrician.

Haven's immune system is holding pretty well - although I'm not exactly sure what that means. She will receive another dose of IVIG in a few weeks to help give her a boost. When talking with the doctors they are always amazed at Haven and how well she has handled all the toxic medications they have thrown at her. Her body just fights right back. She has a force field around her that is impenetrable. It's amazing because I've never even taken Haven in for a cold or flu and she hasn't had an immune system for 2 years.

We had originally thought that the chemo treatments were bringing back the sensation of pain but over time I have watched Haven and now know this is not the case. When she should be hurt, screaming, and crying she just gets mad and yells at me for being concerned. This weekend she bumped her head on the coffee table while trying to get the dog - left a little mark - but if I wouldn't have heard her hit the table I would've never known by her reaction. Then while playing the Wii she bashed her hand in to the corner of the table so hard that it made me jump off the couch. She kept on playing like nothing happened and when I asked to see her hand she just got mad at me. So I left it alone.

We have our 6 month sleep study this weekend at Mt. Washington. Haven has to be down there by 8pm and is usually finished being wired up by 10pm. Then I should arrive back home by midnight - Kris always stays with her because I can handle the 6 hours of driving better - Then I will get back up at 4am to be there by 5:30 to pick them up. Our Sunday is always a waste after sleep studies because everyone tries to catch up on sleep but I am happy they have always accommodated me with a Saturday test.

Sunday will be a recovery day and then Monday Haven has to be at MRI by 7am. This will be her MRI for the Brain, Abdomen, and Pelvis. The Brain was added at my request due to her high prolactin levels. Abdomen and pelvis will be her normal 4 month scans of the cancer and tumor areas. This ensures us that her tumor is still stable and nothing has moved around.

After this Haven will go on an every 6 month MRI scan and every 4 week Oncology visit. The goal is to still monitor everything she does and everything that changes but to get her out of the patient mentality. In hopes that her will and mind are more powerful than the disease and she can begin to grow and her body can accept the changes that the chemo has done to her ROHHAD symptoms.

Pulmonary and Endocrine are still seen every 6 months - so we'll set up an appt with Pulmonary after the sleep study. We have an Endocrine appointment but I just can't remember when. I'm sure it's this month some time! :) I'll have to call over to their office for a reminder!

That is about it for our updates. Love to all!