Little Mason

Our little Mason is in the hospital battling Pneumonia.....please give him some love over on his web site! His parents had to call 911 last night and rush him to the hospital as his O2 levels kept dropping. He has been admitted to the hospital.

MASON'S SITE

MASON UPDATES: please check out Mason's site above for an update from his mom. He is still in isolation on oxygen and on his vent 24/7. His fever finally went down from 104 to 101.

please send him some love - he is super special to all of us.

Little vacation

Whew.....sorry - I had to take about a week off from everything. It all just started piling up in my brain and last week was so busy. I was in California for a few days and then I spent the day at the doctor immediately after coming home. I believe I was in airports and airplanes a total of 14 hours last Tuesday only to get home around 2:30am and at the doctor by 8:00 am.

Haven is doing well. I have a few photos to share with everyone!

Last week was Lauren's birthday. Haven wanted to bake with her for her birthday. They made carrot cake muffins - with substitute almost everything. She really loves to bake and cook.

This weekend I had told my dad we'd go to Gettysburg but it has been way too hot and too humid to take Haven anywhere. We went to Delaware and shopped the mall up there - NO TAX - so we were able to get a few things. I still need to find an Old Navy store to take her to. I might try that today. We're going to take her to see Star Trek this afternoon.

I am happy to have had a week vacation from thinking about anything. I started getting overloaded last week when I talked to Kris about last Friday's meeting with the doctors and then I talked to the doctor and I'm just trying to chill until we hear more from them. It seems that our house is quiet but it is constantly going with doctors.

Haven has a full day of chemo this Friday and then Kris and I will be meeting with the doctors on the 5th of June to discuss Haven's progress from where she started to where she is now. I am proud of her. She does so well with taking all of her medications, she is sleeping through the night, last week at chemo Kris stayed an extra two hours because Haven was having so much fun in the playroom. She never plays with kids so when she does we kind of just let her go.

Saturday at the mall she had so much fun just walking around and when all of us were tired she was still wanting to go. Today she has asked me a few times what we are doing and if grandpa wants to do anything. It's a shocker when she wants to go outside the house.

Thank you to everyone...sorry for the break but it was much needed. I have to prepare my brain for what is coming up and a 3 day weekend came at the perfect timing.

PS: Happy Birthday to my brother Tommy!!!!

Our weekend

Check out my beautiful girl. This was last week. We were hanging out on the floor doing puzzles. I thought I'd snap a photo and she just had the most beautiful smile on her face. She's very happy because the scar on her chest where her port is can hardly be seen. She checks the mirror all the time.

We're going to have to make a note of her weight this Friday when she goes in for chemo. We think she is losing more weight because the port is actually sticking out. We used to not be able to feel it or even find it. Now it sticks out about a 1/8 inch. I gave her a huge hug tonight and actually lifted her up - which not only killed my back - but also made her yelp slightly because she said I hurt her port. Is it possible that she is starting to feel pain now? She didn't scream or anything - just a small yelp!

Her eyes are doing great. Both look blue as ever.

Kris will meet with Oncology on Friday - I am making a summary of the past 3 months for him to review with them. I will also list all of my questions in the book so he can ask them and anything I feel needs to be reviewed or monitored. I have a few things I want checked. I want to put a request in at her next MRI she needs a full upper body scan including head. With her prolactin so high I want to make sure we aren't missing anything up there.

I also want to make sure the pulse ox machine is calibrated correctly. Haven has been dropping in to the 95 range on the monitor and although that is not too alarming it is a change from her normal 97 rate. Plus it's not just a random drop - it has been staying at 95 for up to an hour at a time.

Well...I just stopped for a minute to think about it and yea...I'm probably going to annoy our doctors this week with my questions, recommendations, research, and requests. But it wouldn't be me if I didn't so I'm sure they expect it.

This past weekend for Mother's Day we planted a few trees and plants. I really wanted a Gardenia plant. I bought two last year and they died....I didn't realize they weren't winter plants! So this year I got another one and it's in a pot...so I can bring it in this winter.

This is a Princess Peach Tree (it's really called that) and Haven really wanted it. So of course, for Mother's Day she got a tree....I did all the work burying it. She refuses to walk in the grass because she doesn't like it touching her.

And this is the Cherry tree....a replacement for the Japanese Maple that died last year. I'm not very good at trees...so I'm sure the neighbors were laughing while I was digging and burying it. Probably saying - here is another tree that will die.

Oh well....they were only 20 bucks and we had a lot of fun!!!

ROHHADNET - Ganglioneuroblastoma Cancer

ROHHADNET - is ROHHAD with a Neural Tumor.

This is my daughter - she has been alone with this specific disease until Mother's Day! I was contacted by a mother in NY whose daughter has been diagnosed with ROHHADNET. While I am excited to find another - I am also sad about it. Knowing there are more out there and no one knows what to do for us.

This girl (I can't give names until Mom says it's ok) started showing signs of ROHHAD at age 4. By age 5 they found a Ganglioneuroma in her abdomen. Happily though this is not the cancerous type - YEA! One good thing right????

Everything this girl has gone through is the same as Haven and sort of gives me a look in to the future as to what is coming. When you think about all of these kids and what can happen to your baby it's extremely overwhelming. I can tell you it causes severe migraines! :)

Now our doctors believe all of the children with ROHHAD have had or have a tumor as I said before. But it's never been found.

The girl in NY is going through a rough time and they have now found a small Adenoma on the pituitary. Which has always been my concern with Haven - her prolactin is mega high which could be a sign of a hidden tumor on the pituitary.

There is so much going on....I know I've been slacking on emails and posts but I'm too tired when I get home. I have been doing some of my own research which I want to THANK ALL OF THE ROHHAD MOMS!!! I have been working on some spreadsheets for the doctors that I know they will just enjoy! There could be a link in my "theory" or it could just be me grasping for something.

We don't know what ROHHAD can do or become - I know my daughter is listed as seriously lifethreatening, some mom's have other children and are concerned of the possibility of the other child developing ROHHAD.....we just don't have the answers.

I also had a mom of an almost 3 year old boy contact me looking for answers.....her child hasn't been diagnosed yet but the doctors are so confused and her story is exact to all other ROHHAD children so far. I just gave her a bit of information to take back to her doctors to review.

I'm am researching and looking for something.......I just haven't found it yet.

I will get some photos up from this weekend's events - I hung out with Haven the entire time.

Happy Mother's Day

Ha ha ha....THANK YOU AUNT DOTTIE!!!!

Check out my award: CLICK HERE


thank you again!!!

Happy Mother's Day everyone!

Ready to finish the garden

Well....I've had a week filled with doctors and intense migraines. I'm taking tonight off from the computer to get rid of the lingering headache to prepare for tomorrow. We're supposed to have more thunderstorms tonight - after 2 weeks of straight constant rain I'm ready to have it dry up a bit.

Our mud garden has grown quite well....we've harvested enough mud to build a hut! I am really hoping we can plant some of the seeds in by Sunday. Would be a nice Mother's Day.

Haven's herbal garden in the house has started to sprout up and she has been excited about it.

Oh - Today for the first time at chemo Haven played with a little girl. Kris called to tell me she was actually playing with a little girl. I wish he would've taken the camera since it's such a rare event. She usually clams up and is too scared to go in to the play room. But she was having fun today. She did well getting her port accessed and was great in the car that Kris took her out for a lunch date and a little shopping for a new coloring book.

It's about 9pm and I am happily ready for bed! Looking forward to doing nothing this weekend and maybe a little gardening with my big girl.

Have a great Mother's Day everyone --- Dad and Jeannie thank you for the gift - I will happily enjoy it shopping with my girl at Joanne's!

TEAM HAVEN

Congratulations to Team Haven - they ran the entire 10 miles in the rain on Sunday for Miss Haven. There were approximately 23,000 people at the Marathon this year and these guys pulled through. THANK YOU

TEAM HAVEN RUNNERS:

Meghan & Jace Ely
Chip & Kristen Humkey
Jon & Dawn Gill
Pat & Kelli Mayes (with a baby in the belly!)
Randy Whiteman
Rick Bemben
Soo Kim
Grady Gillies

Meghan and Jace

We want to thank everyone for being part of Marathon and the run for Haven. Even if you weren't on the field you were routing the team on! A huge thank you to Meghan and Jace for thinking about Miss Haven when they were deciding what the charity should be this year. You guys are awesome!! In total they raised over $2,500 dollars for Miss Haven. My plans is to buy her a wheelchair that she loves and to save the rest for medical needs coming up this year!

DONATORS:

Meghan & Jace Ely
Randy Whiteman
Trey & Meg Standing
Stacey Donley
Pete & Shelley Ollis
Amanda Brown
Joyce Moffatt
Andrea Cilona
Nicholas Lovric
Heather Grice
Judy & John Grice
Marlin & Amy Roberts
Autumn Conklin
Sabrina Chin
Eric & Cam Johnson
Emily Keener
Dominic Schneider
Mary Jane Kaiser
Kirsten Sellers
Christine Frost
Darrel Martin
Sara Rigel
Anne Rigel
Julie & Larry Byrom
Nick Hudelson
Rick Gatlin
Angela Lehmann
Carolyn and Wayne Thompson
Carl and Kareen Wylie
Thom and Lorna Gill
Bob and Beth Giorgiani
Jon & Dawn Gill
Michael and Patricia Gillies
Brett Gillies
Ken and MJ Williams
Rob and Nancy Ronconi
Michael Schwenk
Maya Ahluwalia
Jorge Diaz-Granados
Melanie Jagannathan
Alberto Barzola
David Schoenfeld
Jean M. Gauthier
Marion Wise
Jeff Schell
Dustin James
Becky Dingsor
Anna Le
Jack Covy
David Kang
Dawn Langan
Kara Surrena
Lindsay Heizyk
Eric and Donna Mayes
Tom and Patricia Mayes
Don and Ruth Shaw
Ted and Terri Carol
Pat and Kelli Mayes
Barry and Barb Ebner

I can't thank everyone enough for their thoughts and caring for our daughter. We truly appreciate all of you. It's amazing that even in rough economic times everyone can come together to help out a child they've never met. I can't express my gratitude to you enough - and Meg - thank you so much.

Love to all
M

Endocrine Meeting

Well we had a very good meeting with Endocrine today. It was the best meeting we've had with Endocrine. We had quite a few areas of discussion today. Our next appointment will be in 4 months instead of 6 months.

Beginning with Haven's blood pressure being slightly on the rise and today at the doctor her blood pressure was 125/67 and a heart rate of 125. Which the heart rate I'm used to but I noticed last night her blood pressure was 124/63. Which is pretty high. We discussed with Endo and it's possible that her blood pressure medication may need to be reevaluated and increased. We will discuss with Oncology on our next visit. Cyclosporin can also raise the blood pressure.

Next up was Haven's growth. While I have been happy that between January and April she has grown from 39 1/2 inches to 41 1/2 inches it seems as though this is not enough. Haven is around the 5th percentile for height. We had a pretty long discussion as I really do not want to have to put her on growth hormone shots. Our friend Josh is on them and I believe he gets 6 shots a week....I think Haven would beat me up if I tried to do that! :) The doctor said he would not put her on this yet but he said he had to see her grow a lot more in the next 4 months than she has in the last 6 months. If she does not grow a lot over the next 4 months she will have her IGF1 retested and probably begin the shots. Haven's current IGF1 level is 55 and normal is between 57 - 260.

Haven has her Thyroid checked about every few months and as of right now she is looking good. Actually I had to have some blood work done last week and her Thyroid is better than mine! So this is great news. Kris has been concerned with Haven's sodium levels - which over the past 3 months of lab work she has remained in the healthy zone - not high like she was before we started back on chemo.

NORMAL PROLACTIN: LEVEL 0 - 18

The above chart is something I made with the info received today about Haven's Prolactin level. In the early months of 2008 we didn't really monitor this very close. In October I began a lot of research and was extremely concerned about the Prolactin level. The doctors weren't really monitoring it because nothing has ever really been noted about Prolactin in ROHHAD children. I was very emotional about checking this constantly that the doctors have now started to look closely at it. The graph above shows the dates Haven's Prolactin was checked and the level it was at. This shows us that the Hypothalamus is not communicating with the Pituitary.

We discussed the time in the graph where Haven was at her lowest on Prolactin level. This was the best Haven has ever been in 3 years. She completely stopped wearing diapers, she was refusing food and never asked for it, she was sleeping soundly, never sleep walking or talking, behavior was awesome. This was when Haven was on Rituximab and Cytoxan. So as I have been questioning over the past few weeks in my head with the minimal progress we've made on Rituximab. Was it the Rituximab? Was it the Cytoxan? Was it the combination of both at the same time? I believe this is a hint to what we will find out in 4 more months from Oncology. I won't make a guess here but I have a pretty good feeling I'm right.

Cortisol - Cushing's testing -- We discussed retesting Haven for Cushing's Syndrome with the salivary test. Her last Cortisol reading was done in January when she was taken of Prednisone and it was at a good level. The doctor pretty much left this decision up to me and what I wanted to do. I talked to Kris and then told the doctor that I felt I would like to wait until our meeting in 4 months to do the test. High cortisol will stop you from growing. Since Haven has grown this may be more that she doesn't need to deal with right now. He agreed. So in 4 months if Haven has not grown almost twice as much as she has in the past few months we will test the Cortisol.

At most our Endo doctor will only do the salivary testing for Cushing's. If we find that her levels are not normal he will refer us to a doctor at NIH for further testing. He is not familiar with all the types of Cushing's and the doctors down there specialize in this. Knowing Susannah also went to NIH makes me feel more comfortable with going there to be tested. The reason we can not do the pee test on Haven is because she is still in full-time diapers. She would have to be admitted to the hospital for a week on a catheter to get all of her urine. I do not want her to have to do this if it's not necessary. So in September we will move forward with this.


I feel really great about our meeting and the decisions we've come to together. Kris said he felt very comfortable with it all. We continue with our current list of medications, checking her blood pressure twice a day, and monitoring her on the pulse ox machine at night.

Thank you to everyone for all your help.

Gardening

Haven working on her in-home herbal garden. She also made a strawberry garden in the house. Once they sprout she can move them to the bigger garden in the back yard. We were only able to get dirt in the back yard garden before the rains hit.

Here she is mixing her dirt and getting ready to plant the seeds. We had worked on the front yard all morning.

Our garden out front. She worked hard on this with me. I had to dig out about a foot and half more from the house. The plants were getting water where they were. So we transplanted all of them forward. Our rose bush is doing great.

I was so worn out from 6 hours of digging and planting yesterday Haven and I both went to bed at the same time.

Next up our Topsy Turvy Tomato planter and finish up the back garden. She and I had lots of fun on our girl day.

The 30th Annual Blue Cross Broad Street Run

TEAM HAVEN

Today was the major event! I can't wait to hear about it from Meghan and get some photos for everyone to see!!! Go Team Haven!!!

The team is out running for our Haven at the 30th Annual Blue Cross Broad Street Run in Philadelphia, PA!

NEWS: MEGHAN RAN THE ENTIRE 10 MILES IN THE RAIN ---- THANK YOU TEAM HAVEN FOR WORKING SO HARD TODAY FOR MY BABY GIRL!!! YOU GUYS ROCK!

Hospital visits

Well I have been concerned about Haven going to the hospitals since the outbreak of the Swine Flu. We have 10 possible cases here in MD but no one has confirmed them yet. With Haven living at Johns Hopkins I'm not a fan of her going in the hospital.

I kept telling her last night - Do NOT touch the elevator buttons and wear your mask!

She argues with me about both of these all the time. We really argue about the elevator buttons more than anything. I do not like her to touch them - everyone that's sick is going up and down the elevators all day long. I don't need her to touch them and rub her face and get sick. I don't like her touching the door handles or anything in the bathroom. I follow her around with hand sanitizer - which she gets pretty irritated at me. But I've had a child without an immune system make it an entire year without ever getting sick!

Kris and Haven got to Oncology but had to fill our paperwork regarding the flu and if they had any symptoms before coming in. I know Johns Hopkins is really keeping that hospital clean and sanitized - which is awesome because the hospital is so huge.

Haven currently is weighing in at 71 pounds and heigh of 41.5 inches.

I almost had a party last night - Haven's heart rate got down to 88 for about 5 minutes while she was sleeping. It ultimately went back up to 120 and stayed around there but we did go down for a bit. So that was cool. She also slept the entire night. Even the night before she slept from 6pm until 7am. That was a shocker.

We have Endocrine on Monday afternoon. I am looking forward to this appointment. I have lots of questions and we haven't seen him in a while. A few of the topics of discussion will be Cushing's Syndrome and growth hormones.

This weekend our plan is to finish our garden! We'll show photos when we finish! :)

Love to all
M