ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child's life. There is no cure. Most doctors, if they take some time to learn about it, pass you around until some specialist says yes, they'll take you. Our daughter, Haven, is now 19 and has been living with this for almost 17 years. She was also diagnosed with Neuroblastoma Cancer, which is how we even found out about her ROHHAD. She's done experimental treatments to stop the progression. We believe it has helped tremendously but ultimately there is no stopping this disease. 

Please take a moment and learn about Caoimhin Adams, an 8 year old boy from a small place in Ireland. 

ROHHAD IN IRELAND

My condolences to the family. 

Pulmonary November 4 visit

Last Thursday was my turn to take Haven in to her doctor appt. These things always run about 2 - 2 1/2 hours....plus drive makes it a full day! We left at 9:30am and got back around 2pm!

We met with the student doctor first - they always do this at Hopkins. I understand the need to teach but I hate repeating every aspect of this horrible syndrome! However, this time was different - may be it's because I've walked out of doctor's offices before because they didn't even take a minute to look at her file...but this student knew about 75% of ROHHAD and all of Haven's symptoms. I was very impressed!

After getting a thorough check up we met with her regular Pulmonary doctor and discussed her sleep walking habits and a few new issues that have popped up. Well not that sleep walking for her is new (she's been doing it for almost 4 years) but it is no longer at 11pm start. It starts between 1 - 4 am now and sometimes last for over an hour at a time. Even as I write this - last night (november 8th) she was going ALL NIGHT! There was a break here and there but it was pretty much non-stop. Even when I left for work at 6:15 this morning she was still going.

This is where the doctor is concerned on the sleep walking. Normal sleep walking should happen around 3 or so hours after falling asleep. With Haven's starting 5 hours after or not even starting until 5 or 6 am it raises some concerns. His main concern is seizure activity. He is concerned that it is possible that there is some seizure activity happening in her sleep causing the sleep walking to occur at these times. He made sure we have her emergency seizure medicines and what we need to do. But Haven hasn't had a seizure since 2007.

Then there is a new development in her breathing while sleeping......the past 3 months she has begin to snore. It started off small...random snores. I tried making the house colder, hotter, sleeping sitting up and changing her pillow. Now she is snoring every night and practically all night long. Even when taking naps on the couch she is snoring.

So with both of these issues happening around the same time the doctor is pushing her sleep study up to get us in quicker. There is usually a 3 month waiting period. He will be involving Neurology on this sleep study and adding an extended EEG to the test. So it will take a bit longer to get the results back as Neurology will need to read their section. If she is showing seizure activity she will start seeing a Neurologist regularly....but let's just hope that's not the case.

Haven's last sleep study showed tremendous improvement in her CO2 and sleep habits. She had dropped from a CO2 level of 50 to a 45 and wasn't really going crazy in her sleep. So once this is scheduled and done I will feel much better.

Next up in regards to doctors for Haven is Oncology on November 15th - she is due for another round of IVIG and then hopefully a quiet holiday!

6 Week Oncology Visit

Miss Haven had her 6 week visit to Oncology today. She did as awesome as she always has.

So far Miss Haven is holding steady. It's been 15 months since our last huge chemo treatment and 11 months since we were in isolation and my baby girl is doing AMAZING! Everything that reversed after the chemo is still holding steady....we've seen nothing revert back. She isn't even wandering the house in her sleep anymore...she still screams and yells but hasn't walked the house in 4 months.

She also didn't need her IVIG boost today --- so they will recheck her on November 13th!

Next up Endocrine appointment!

Matt's Helpers Foundation

A huge thank you again to Matt's Helpers Foundation ---- they always seem to know when we need it most!

General

First off I'd like to thank all of our family, friends and strangers we have met over the years for supporting our family and learning about our daughter. This disease affects so few but for those that it does affect it hits hard and without care.

Many over the past few years have written to me and to Haven (especially Haven) and have remained loyal to her blog and commented to her and to me through her blog. I do read all of them (even the spam stuff) but not everything is published to Haven's blog as some are personal questions that may come to me. I just want it said that ROHHAD and CANCER are very tough diseases....to have one is enough to destroy your world as you know it.

There was a comment sent to me by an anonymous person stating that one child - out of the 70 somewhat known cases has the worst case in the ENTIRE world. Now this is a blanket statement that I feel had no pertinent reason to be in the "story". Considering you do not know all of the cases in the entire world I'm not sure how you can say this to be a fact. Considering some children have 30 out of 35 of the symptoms and no doctors to help them I can't not understand how you can factualize this. And to be straight out honest......the children with the WORST CASE OF ROHHAD IN THE ENTIRE WORLD.......are the children who have died from this horrible disease.

I am grateful that our doctors for the past 3 1/2 years stopped and listened to us...many families don't have that luxury. We didn't for the first 2 years we asked for help. I am grateful that my husband and I were brave enough to try our treatments with no guarantee...some families aren't offered an option of anything except sit and wait.

Who knows if in 1 month my daughter's ROHHAD will reverse all that we worked for and she suddenly drops....or if in 5 years the chemo that we used comes back to bite us because she now has Leukemia......or if in 20 years she is still stable and having no more issues than she did at age 3. WHO KNOWS.....I would never claim my daughter has the worst case of any disease...I do not need this to exist. I would love to say my daughter is cured...and no longer has a disease. I can say my daughter has the best case of cancer possible...as for ROHHAD no one knows what tomorrow will bring....because no one knows exactly what this disease is or what it can do.

In my heart I cry every day for every child that has passed away from ROHHAD. You are the true heroes and you are our angels. Your parents are our strength because I don't know if I could be that strong.

TWO YEARS

IMPORTANT DATE: JUNE 6, 2010 --- NATIONAL CANCER SURVIVORS DAY


Haven's stage of cancer is noted to have a 70 - 90% five year survival rate.

There are less than 5 children out of 1,000,000 children born who have Ganglioneuroblastoma Cancer.

Well it's been exactly 2 years today since Haven received her first dose of chemotherapy - RITUXIMAB. She began with about 2 months of chemo 4 days a week that tapered over the next year.

Exactly 1 year ago Haven began her 5 years to become cancer free!!!! So in April 2014 we will have a huge party at the house as Haven marks her 5 years!!!!

Friends Of Haven

I posted earlier that I was working on a friends of Haven section! I have many of them but of course not all of them! You can check them out at the right side of the screen or click the links below to go to their specific section.

Sophia Adamo

Jessica Magnus

Denika

Mason Byrom

Charlize Joliat

Jessica Haight

Alexis

Niketa Brown

Noreen

Jenna

Josh Wooten



Message from Haven: We love you all! Thank you for your pictures and stories!

Hi CY - ready to go

Yesterday Kris picked up Haven's wheel chair. Thank you to everyone that donated to her - we have been able to load up on her supplies and get her the wheel chair. So very much appreciated. This will be extremely helpful at the hospital with wheeling her back and forth. That hospital is a city and it's huge.

Haven wasn't happy that it wasn't pink and cool - so she and Kris are going out this weekend to get fabric and pink things to make it cool.

Today we spent the day at Johns Hopkins. We arrived at Oncology at 7am to ensure we were there in time to get the medicine and take her blood tests. We didn't know how much blood they were taking and Haven wasn't allowed to eat until after her CT Scan. This was the first of 3 rounds of blood withdrawl. LOTS and LOTS of tubes. She had to have her blood taken every 30 minutes.

This is Haven finishing up the 3rd round in the play room. By 9:15 we headed down to CT and sat until 11:30 before we got in. Keep in mind Haven had a lot of blood taken in the early morning and couldn't eat or drink anything. She was beginning to look very bad, pale and weak. Then they loaded her up with 6 syringes of contrast for the CT Scan of the head, neck, and abdomen.

We finished CT about 11:50 and headed straight for lunch. Haven ate and drank like crazy. Then it was immediately back to Oncology to talk with Haven's doctor and Child Life.

We reviewed everything about the procedure which I will put up here once I again review all the paperwork and books we received.

Child Life is extremely helpful and it's great to have them there. Not only do the play with the kids in the playroom and their rooms but Kris and I have had a really hard time trying to figure out how to talk to Haven about this. Kim from Child Life sat down with Haven and us to discuss the surgery and putting in the Hickman line. It was so cute. She had a book on the Hickman line that is written for kids. She went through everything with Haven so she would understand and Haven was very happy to know all of it.

I received a book on Bone Marrow Transplants in Children.

Now it was 2:30 and Haven was looking horrible. She had huge dark circles around her eyes, her speach was slurring, and she was wobbly while walking. We were pretty worried and even had her eat some candy - which she never has. Hoping that would put some sugar back in to her system. We got her in the wheel chair and headed to the car. Not even 30 seconds in the car and she was asleep. She was very worn out at home and laid on the couch for a few hours drinking fluids and eating. She is back to normal now and partying.

This is our last weekend home for a very long time so tonight we are partying and watching Haven TV. Tomorrow she will fix up her wheel chair and possibly see a movie. Then Sunday is Father's Day so she and Kris will spend the day together (not like they won't have many of those days coming up).

Thank you to everyone that keeps up on Haven. Thank you to everyone sending her gifts. Workbooks and coloring books are her favorite and she has a few to take to the hospital with her.

Surgery/Chemo update

Deledo at the Surgeon's waiting room

Yesterday was a hospital packed day. We got down to the surgeon's office around 9am and luckily I like him a lot because we didn't get in to see him until almost 11:30. Child Life came in to discuss with Haven what will be happening during her surgery and why we are doing this surgery. Child Life come to talk to children about their diagnosis and what is going to happen to them in a way that children can understand. Haven knows almost all of the Child Life people now.

After talking with the surgeon we understand a bit more what will be happening. Haven will keep her current port (under her skin) - which is good because she loves that thing. The Hickman line will be placed in her chest on the opposite side. So she will in fact have two ports.

The best route is to get the Hickman line to go up the jugular vein in her neck - as this is the most direct route and safest. The surgeon seemed a bit concerned as to whether or not he will be able to fit it there. If it is unable to go in this way they will have to put it up under her clavical. This runs a higher risk of puncturing the lung - which he said if that happens they will put a tube in her side to release the pressure until the lung heals.

Surgery is scheduled at 7am on June 26th - we are required to be there by 6am. Once surgery is finished she will go in to recovery and then will be admitted in to the Inpatient Pedatric Oncology building. She will then begin her chemotherapy (Hi Cy) that day - beginning her isolation and rebuilding of her body.

Tracker at the surgeon's waiting room

After meeting with the surgeon Kris took Haven over to Cardiology to have their workup done. She had an Echo and an EKG. Then over to Oncology for lab work. He said he was concerned with how much blood they took that he got Haven a wheelchair. She told me it was 10 tubes. She does so well with all of this it's amazing.

After that they met me at TGI Fridays (Haven's favorite place) to have dinner. Haven was allowed to have anything she wanted (within reason of course). She picked Macaroni and Cheese and Broccoli. She never has Mac-n-Cheese so she was super excited.

Tomorrow we will be in Oncology by 7:30am to do more labs and a Cortisol check from Endocrine. At 9am we have a CT scan of the head, chest, and abdomen. After the CT scan we will head back to Oncology to meet with her doctors and sign all the consent forms and review again what the procedure is and all of the risks involved.

Then this is Haven's last weekend at home. My mom flew back in from Korea 2 weeks early last Friday as a surprise. She is going to make Haven a huge Korean dinner this weekend - Bulgogi.....I can't wait!!!! My plan is to do absolutely nothing except maybe take her to a movie of her choice.

Thank you to everyone for constantly inquiring about our baby. She is doing well right now. I know she doesn't fully understand everything and we haven't told her that she's not coming home yet. That will be next week. Right now we are just enjoying every minute we can with her.

Love to all

ROHHADNET Syndrome

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

Whew....say that 1 time fast!!! Everytime I go to a new doctor I have to! Then I have to explain it and start at my pregnancy all the way through her first 5 years.

This is what Haven would be diagnosed with IF doctors agreed. There are articles on both and rebuttals on both. It really all depends on the "type" of doctors I think you meet with.

Our doctors believe in the ROHHADNET diagnosis over just ROHHAD. They believe all children with ROHHAD have had or have neural tumors. Some may be just so small you can't detect them - even with an MRI. Or maybe you've read that Neuroblastoma is one of the rare human malignancies known to demonstrate spontaneous regression. In this case you have a tumor, never know it, and by the time something else shows up the tumor is gone. If that's the case, you will never find a tumor.

So when we go in to a doctor I realized last week that I can't just say "Neuroblastoma" as a general diagnosis of her cancer. There are 3 types and it's important to know which type because "Ganglio" is the one known to be associated with ROHHAD. Pulmonary explained to me that this is a very important note and I shouldn't use Neuroblastoma in conjunction with ROHHAD.

So I felt this was an important part to share....as I dive deeper and deeper in to our medical world.

Cancer is not the same for everyone

This is in response to many people who look at me like I'm lying that my daughter has cancer or that she is on or ever had chemotherapy. Or they look at my daughter and say - she doesn't look like she has cancer or say she doesn't look like she's on chemo.

I would like to explain that there is a "stereotype" of what you "should" look like when you have cancer or are on chemo. I too was unaware and believed that cancer means you look a certain way or that chemo meant you looked a certain way. Because that's what we see.

I'd like to explain that having "cancer" does not mean you are skinny and frail. Some and maybe most do....but this is not a rule. Being on chemotherapy does not mean you throw up or you lose your hair or you become emaciated.

Haven has Ganglioneuroblastoma Cancer and ROHHAD Syndrome. This is an odd group of issues. What is more important is that she does actually have BOTH. ROHHAD Syndrome is known to have Ganglioneuroblastoma....but it's EXTREMELY rare to find a child with both. Her cancer is a known cancer but it didn't affect her the way many of the other children are affected. She has a Paraneoplastic Syndrome or ROHHAD Syndrome. The ROHHAD causes extreme weight gain (not usual with a cancer patient). Again she falls under the condition called ROHHADNET.

Her chemo - which I didn't know until January of this year - is a chemo that actually GROWS hair. She will not lose her hair on this chemo because a side effect is hair growth. Kris was actually wondering if it would work for him because her hair has gotten so thick.

There are many forms of chemo and many cancers they are used for. Sometimes one is used or many are used. Haven has been on 3 different chemos in the past year. The only chemo that made her sick was Cytoxan and we had medication to counteract the vomiting. Sometimes she would get sick but 99% of the time it just made her tired for about a day.

Some chemos aren't even used for cancer. A low dose of Cyclosporin is sometimes used for Psoriasis. Which seems crazy to me....but hey it worked on someone and now they use it.

Anyway, learning about cancers and chemos has confirmed my belief that you don't judge a book by it's cover and you don't assume everyone reacts to a disease or treatment the same way.

Grandparent's Week

Haven had a busy week last week as her grandparents came in and out throughout the week. After April 1st we will be keeping the house locked down pretty tight as we get deeper in to Haven's chemo so everyone had to come see the Princess.

We were missing a couple of the grandmas though - Grandma Sing was hanging in Utah and Grandma B-Honey is in Korea. We have a few Great Grandma's out there that we want to say HI too...we don't see them much at all but we wish we could.

We had a blast the entire week and Haven kept everyone busy.

Grandma and Grandpa Virginia came out early. Grandma stayed with Haven for the entire week and they were constantly working on crafts when Haven wasn't at the hospital. Although they only had 2 full days the entire week together they stayed really busy. As you can see in the background they worked on the tree. Now I haven't had time to take it down and we joked about having a tree for every holiday. Haven is now working on a new tradition - we have the first Easter Tree. As you can see they made egg ornaments, bunny ornaments, and a big easter egg bow is on the top of the tree. It's absolutely adorable.

They also made a St. Patrick's Day set up with a leprechaun on the side table. He is still there and she has been reading her books with us each day. I'm sure all of this will stay where it is until Grandma comes to change the holiday look. :)



Later in the week, Grandpa Beard Off came to visit us from Utah. He brought with him a most amazing quilt made by Grandma Sing. There are sections on the quilt for all of her family members. There are also hidden messages sewn in to the quilt that say "kisses" "hugs" "Haven" and flowers and butterflies. The quilt is absolutely amazing. There are also little charms sewn on to match different family photos. Haven has been asking to sleep with it but mom has put it away in a zipped back to keep it safe. Haven will absolutely cherish this quilt as she grows older. THANK YOU SO MUCH GRANDMA SING (and grandpa for your computer skills)....WE LOVE IT. We hope you can visit next time.

Haven randomly likes to try out new smiles. She practices them in her floor length mirror and this is one of her new ones. She says she doesn't do big smiles anymore because she's a little bit bigger now. I know, I have no idea what that means but I don't really argue with her much. But Grandpa certainly doesn't have a problem with big smiles! :)

Haven and Grandpa stayed in this position for two days. Haven asked me on Saturday night if she could stay up and "party". Of course I rarely say no to her and her Grandpa hasn't seen her in over a year so she partied. She and Grandpa worked on this sticker book that was sent to her from a MACS friend. They started the book right after chemo at 8pm and we had to beg Haven to go to bed at midnight.

On Sunday, She and Grandpa started early. We couldn't tear these two apart. I thought we were going to have to pay Haven to let Grandpa take a break. Haven's friend Mason sent her a 1st grade workbook that is about 500 pages.......They worked on this book from 8am until 11:30pm that evening. I think Grandpa took two 15 minute breaks to help Kris with the trash (sorry to put you to work Gpa). I'm not even sure Grandpa ate the day.

PS: They almost finished the entire book!

Before Grandpa Simon left with Grandma on Sunday we had to have a Grandpa photo. These are Haven's Grandpa's and some of the men that love her like no other in this world. You have Grandpa B-Honey, Grandpa Simon, and Grandpa Beard Off.

Wow, doesn't my girl look older! She has no make up on but she looks like she does. She has changed so much over the past year. She is our world and our princess.

Thank you to everyone for visiting our girl. Everytime we see her smiling and laughing and having a great time we just take it all in. We stop whatever we are doing just to hear her laugh. She has never giggled and laughed as much as she did this week.

All our love to our families for the support and care you have shown Miss Haven.

PS: we have lots more photos on Haven's flickr site at the right side bar. Just click the box and you'll see them or click a photo above.

Pre-Op appt

Haven and I met with her Pediatrician today. It was a great meeting - we talked with her doctor for about an hour about everything that has been going on and how I feel and how Kris is doing.

Haven's Pre-Op exam was good. Mainly it's to review all of her medications, anesthesia she is not allowed to have, any past issues we've had with surgeries or anesthesia.

I received some info from Haven's medical files. Which is always nice to have them in our files.

It's weird......the doctors tell us that Haven has a serious disease and all that. But it's not until I read it in her files from last week where her doctors states "serious illness which is life-threatening" that it actually hits you. ROHHAD is a disease my daughter could easily die from --- not her Cancer.

All of our children with ROHHAD are in a life-threatening position that we have no control of. Our children may look fine today and be in the hospital for months at a time tomorrow.


Miss Haven is in Chemo all day today. This will be her 2nd dose of the Rituxan. We have been closely monitoring the toes for Tuesday's appointment.

Hope everyone has a happy Friday the 13th!

Chemo and Infections

Haven started her first dose of this other chemo last Friday. By Saturday, there is an infection in her big toe on the left foot. By Sunday morning, there are three more toes on the right foot that are infected.

By infected - I mean green, gooey, swollen.

By Sunday afternoon her big toe on her right foot is cracked open and bleeding. The bleeding has continued and during chemo yesterday at the hospital it was bleeding again.

She had 3 doctors look at her feet yesterday and the decision was made that she needs surgery on the toes.

Haven has less than a month to do this surgery because at that point her immune system will be gone and the risk increases significantly.

Considering that we already have surgery scheduled for her eyes on March 26th this only leaves me with next week available. Haven has an appointment with the surgeon on Tuesday, March 17th and hopefully we can get the surgery done next week.

Making it two surgeries in two weeks. If we're hard to reach over the next few weeks you will know why.

Neuroblastoma Tumor

MRI results came back today - Kris reviewed them with Haven's doctor and EVERYTHING IS GREAT!

The tumor that still remains has not grown since last May so we will continue to focus on ROHHAD and monitor the cancer.

Thank you to everyone thinking about Haven! She is currently in chemo at the hospital. They have been there since 8am and she should be coming home today around 5pm - as long as it all goes well.

Love to all

Cardiology

Spoke with Haven's Oncologist this morning - Cardiology report came back great. Miss Haven has a good heart and the chest looks perfect!

We're very happy for this news.


Haven will be in MRI tomorrow for the Ganglioneuroblastoma Tumor in her abdomen. This is our followup. Her last MRI was in November 2008.

The hospital called yesterday wanting to reserve a room for her for overnight recovery and to be monitored. I was able to convince them not to make her stay overnight even though they were really urging me to have her monitored. The more her file grows with ROHHAD and the breathing issues involved with ROHHAD the harder it will be to fight this request. I'm sure by our next MRI they will keep her.

Haven has had issues with 3 other MRIs and had to be intubated during and after the test - but it was not due to her ROHHAD syndrome.

Mostly likely Haven will be in recovery for about 1 1/2 hours on oxygen. Her oxygen is usually very low after an MRI so once it is up to at least 97% they will send her home. I'm guessing, from past MRIs, she will be at the hospital for about 5 to 6 hours.

Rituximab Update - High Dose Chemo Immediate

Haven spent half of today at the hospital having her chemo levels taken - she was at a toxic level earlier this week and today was in good shape. They met with her Oncologist for about 40 minutes and went over any questions we had. I had a few sleepless nights this week and sent a few emails to the doctors.

As I was driving home this evening her doctor called (he actually called 3 times today but I didn't answer). Remember April 1st! ...... well things change fast around here

During the 15 minute conversation her doctor informed me that he is very concerned and extremely anxious about Haven. He has reviewed all of her tests she has undergone the past couple of months and all the blood work. As noted by him (as best I can remember):

I have been working closely with Haven for 2 months and reviewing everything from the past 1 1/2 years of treatment. Haven is regressing too fast. There are new areas of concern and some of the recent damage can not be repaired. We have lost too much time and ROHHAD is progressing. We need to move to the next step. Cyclosporin is too slow for ROHHAD. I need to stop everything now before it gets worse. I need to see results and I need to see them now. Haven will begin Rituximab next Friday at 9am. We will discuss next week when you come in for her Cyclosporin levels.

Haven will begin heavy Rituximab starting March 6 and will continue on Cyclosporin at the same time. She will be on for a longer period of time now. This is one month sooner than originally scheduled. We will start her back on the Zofran - as this will help to keep her from being too nauseous.

Haven will also have an MRI on the Ganglioneuroblastoma tumor next Thursday at 9am.


As this is now our last weekend before this immediate increase in chemo, we will be taking the weekend to relax and hang out. We have crafts to make and lots of thank you cards to send out. Haven will be sick on this chemo - we know how the lower dose of it made her last year.

Thank you everyone for always sending cards and gifts to Haven. We truly appreciate everything. Haven has been working on small gifts to send to her new friends out there.

Haven's ROHHAD Update 2-12

Today was a long day. We headed down to Baltimore for our first visit with the Orthopedic Surgeon that will be watching Haven's bones as she starts to grow. We've also had many severe back pains that seriously just paralyze Haven and she falls to the floor in a ball grunting.

If you remember I took her in on Dec. 5th for a CT Scan of her back to check for fractures. We were clear on that. Then a few weeks later it happened again when she was playing.

I took some photos of her xrays today from the computer screen. Sorry they are from my phone so they are not too clear. But I did detail them so you can see what is what.

This is an xray of the front view - sorry I didn't get pictures of the side view. Haven really wanted them too. This xray shows you the Port, tumor on her back, curve in the spine, and original location of the neuroblastoma tumor. You can really see how big the tumor on her back is from this xray.

A normal spine of a child at her age is 45 degree angle. Haven is currently at a 51 degree angle.

I realized that most people probably don't know what I mean about a port. She has a port in her chest which is essentially like a little rubber stopper. It is sewn in under her chest with about a 3 inch scar.

To access Haven's port they use a 1 inch needle each time that goes in to her chest at the port. Then there are little butterfly wings that clamp the needle down on to the chest to stay in for the day for medicine and IV fluid. The port has a line it in that goes through her artery up in her to her neck. She has a small incision in her neck to pull the line through. You can feel the line but you can't see it.

From today's meeting we now know the status of Haven's spine. We also learned that her bones are very brittle and as of now still a bit spongy. They are starting to squish together as the discs between vertebrate get smaller. This is causing her the pain. He did not see any fractures but with the shape of her spine and the weight he said she could easily have a fracture at any time.

He mentioned the possibility of Haven having Brittle Bone Disease due to the long term use of chemotherapy, high levels of steroids for over a year, and now more chemotherapy. She has not been allowed to have any vitamins for over a year and we removed milk from her diet due to high sodium levels. She has been drinking milk for over a month now.

Tuesday, February 17th, Haven will have a bone density scan to check her for Osteoporosis. Her Endocrinologist will handle it from that point unless surgery is needed.

Wednesday, February 18th, Haven will see Dr. Price (original surgeon that removed most of her Neuroblastoma Tumor) in regards to the tumor on her back. He will examine her and discuss surgery to remove it. 90% of the time these tumors are not cancerous (we're told) but they will remove it and have it tested.

We have another sleep study planned for this weekend in Mt. Washington Pediatric Hospital. This will be Haven's 3rd study. They will be videoing her the entire night this time.

Ultrasound is February 24th

Eye Surgery is March 26 - along with Blood Gas testing

As everything unfolds or we get more news I will keep everyone updated.

We hope all of you have a great Valentine's weekend. Haven has received many Valentine cards from around the world. Thank you to MACS site for all your help with all our children.

Haven's Schedule

Kris took Haven in to the doctor on Friday to have her levels checked again. I honestly didn't know what high levels meant or what we were even looking at. After having her levels checked Kris met with Dr. Paz-Priel to review everything.

Haven is now scheduled to be in the hospital to have her levels checked three times a week - Monday, Wednesday, and Friday. She still takes the chemo two times a day (8am and 8pm) with her other medication. We just lowered the dose temporarily. Once she is stable they will again increase the dose.

Normal levels on this chemo (which I just found out on Friday) are at 150. Haven was at 300. So double the normal. I haven't listed the name of her chemo because it's too confusing when you read on it. Usually this chemo is given to bone marrow cancer patients or Leukemia patients. So it doesn't make sense to the normal person when they check Wikipedia or something. But we understand why she is on it and how they came to decide to use this one.

This week:

Bloodwork - Monday
Full day chemo - Tuesday
Bloodwork - Wednesday
Pulmonology - Thursday
Blood work/Dr. Paz-Priel - Friday

Kris will take Haven every day and I will meet with him on Thursday at the hospital. I have never met the Pulmonology doctor and have a list of questions for him.

ROHHAD / Neuroblastoma Treatments

Here is an update on Miss Haven – it’s good with the bad

Cortisol levels are great. Haven is producing Cortisol on her own which is AWESOME! We were a little worried about this but maybe this means we won’t need to do growth hormone shots in 09! It’s always a plus when Haven has good news. We hope to see her start growing now.

Bad news: Haven’s body wasn’t handling the new chemo very well. She had her levels checked today and I received an email from her doctor that they were way too high. So we were instructed to skip tonight’s dose of chemo and to only do half the dose tomorrow. She will go back to the doctor at 8 am on Friday to get her levels rechecked. We hope they level out or she may have to switch chemo treatments already.

I have been asking the doctors about her symptoms but I still have not gotten an answer on that. Since starting this new chemo last Wednesday she has not slept for more than 4 hours in a night. Her gums are always sore and I have been loading her up with bubble gum flavored Ambesol. She has been peeing like crazy and she is achy all over. We were a bit concerned this afternoon. Haven fell asleep around noon and could not wake up. Kris tried waking her up many times and she just couldn’t do it. He finally got her to get up around 5pm but Haven sleeping like that is very unusual. I was sure we’d be at the hospital but she seemed fine while I was home.

I’ll update again after her levels.

Kris did take some video yesterday of her sleeping – I guess it was pretty crazy. I haven’t looked at the videos yet but I’ll post them up.