Memory Lane

I've been having a few issues lately - feeling like we've missed a few years of our baby girl's life. She's been stuck in hospitals for more than half her life. Today I started working on a memory book for her and going through the photos was hard. Everything was so normal.....at least for the first 2 years of almost 6 now.

Haven as a newborn. Every time her daddy changed her he would massage her legs. She loved it. She would stretch them out and point the toes up! She was so long and skinny....I kept wondering when she would have Michelin legs.

Her 1 year photos. I took her to Baby's R Us to get some stuff for her birthday and made an impromptu decision to spend too much money on photos. We bought the outfit right there and changed. Plop.....she was all smiles for the photos. She loved having her picture taken.

Age 2. Haven was so active. She'd run around like a crazy girl, dressing up and acting wild. Climbing the furniture and jumping on the couches. She rode this scooter around like crazy. This was a birthday present for her 2nd birthday. She immediately when out and rode around on it.

But that 2nd year turned horrible in July. This is Haven's 3rd birthday party. She had gained so much weight, became very reclusive and extra shy. She didn't know how to be around other children. She didn't want to play and became extremely OCD about everything. We started hospital visits over 6 months ago and at this point she was having lots of stomach pains and bleeding. This was the beginning of the sleep walking.

Age 4. Just a few weeks before this photo we had learned that she has cancer. She was scheduled for surgery immediately following her birthday. This was a very high stress time in our family. I cried when I cut Haven's hair - but I still have it saved. She had such beautiful blonde straight hair. Never did I know there was a tumor hidden in her abdomen and an extremely rare syndrome causing all of her issues.

Age 5. This was this year. She had just gotten off steroids she had been on for a year, cyclosporin, and had done 5 rounds of Rituxan. She was preparing for the most challenging year so far.

As age 6 approaches I can only wonder what is in store for our little baby.

Reviewing the journals

First before I get in to reviewing the journals I would like to thank everyone that sends cards and gifts to Haven. We truly appreciate the smile it brings to her.



This afternoon - after a day at the hospital - Haven received a beautiful bouquet from Mason. When I came we enjoyed it together and she wanted to call Mason. So she ran in to the bathroom with my phone and got to talk to him for a little bit. They discussed the important things like "What did you have for dinner?" --- it was adorable.

Haven talks to Mason (and pretty much everyone) in the bathroom. She hides in there so we can't hear what she's saying. I have to stand by the door incase there is a machine but when the person answers I have to leave.

Over the weekend Kris and I had to sit down and review Haven's journal. Initial journal reports from early 2008 to now. There is one thing I realized over the weekend that we had forgotten about one big thing - that may not seem like a big thing to anyone else but could be a positive sign. Hey, we'll take what we can get right now!

Haven used to be a heavy sweater. It started around age 2 years and 8 months. She would be sitting and doing nothing and be pouring sweat. She would sit on the couch and color in her books and her hair would be dripping with sweat. It was crazy. Well we did chemo for 6 months last year and so far about another 3 months this year. I realized - Haven has not sweat like that since last summer. It just stopped.

Did one of her chemos from last summer stop that portion of ROHHAD? I don't know but it's a good thing.

Also some happy news:

Since starting chemo in January Haven has lost 4 pounds and grown 1.25 inches. In December (as well as all year) she remained a constant 39 1/2 inches tall. She is now 40 3/4 inches tall.

We are very happy to realize all of this. And hope we'll see more positive signs develop in the future. Let's pray this chemo actually works a miracle for us!

ROHHAD and RARE DISEASE DAY

Just wanted to remind everyone - this Saturday, February 28th is Rare Disease Day.

RARE DISEASE DAY is not only in the USA. There are events planned all around the world. Check out the web site and check out your location. UK starts on the 25th!

While I am constantly researching ROHHAD and Ganglioneuroblastoma Cancer I sometimes run across new sites that I have never seen before. Mainly because they have my daughter's name in them or they list something relating to ROHHAD. About a week ago I found Little Miss Hannah's web site. Hannah is 6 months old and is fighting Gaucher’s Disease Type 2 or 3. Since her mom shared Haven's link to bring awareness to Haven's rare disease I wanted to share with you Hannah's link.

I would like to thank some other brave women who have emailed or sent me letters about their child's stuggle with ROHHAD. Although they are worried that it may push me to lose all hope to hear their stories I am overjoyed to hear from these moms.

Although some doctors want to make this disease be our fault and accuse of us causing this disease we have to be strong in knowing we did nothing as parents to make this happen. We all have the same story from our child's birth. I am reading your letters and everything is like deja vu - I'm sure all of you feel the same when I send you Haven's story.

For 2 years we were told it was our fault and we were overfeeding our child and we were doing everything wrong. I have been angry for 3 years now and even when I tell myself I'm not going to be angry anymore I am. ROHHAD SUCKS! It's horrible....I hate it. No one understands it and it seems like you are alone. None of us have slept in years due to worry about our children. We all pretend to go on like everything is normal....but when I take my daughter shopping for clothes I am reminded it is not normal.

People stare and believe it or not, people say stuff. People come up and say stuff about how our children are fat and that we should be ashamed of ourselves as parents and how we are ruining our child's life. I'm sorry but I want to go insane on these people but out of respect for my daughter I keep it as civilized as I can. I can't promise that I'm always civilized. I know all of us as parents with ROHHAD children are going through this. AND I shouldn't have to lock my daughter in her house so she won't be stared at by ADULTS! Anyway, I hear all of you and I completely understand what all of you are going through...we just have to be there for each other.

I took Haven shopping Saturday to buy some new clothes - as she has again grown out of everything we bought only a couple of months ago. She didn't want to try anything on - she didn't even really care to look at the clothes. She told me "I don't know why we come shopping - nothing fits me". This is extremely difficult for me to hear and even more for her. I don't know what to do here. She's 5 years old and wears a size 12/14 shirt.

April 1st Haven's doctors meet with the medical board again about her ROHHAD and where to go. Until then I will be working on some reports and charts for the doctors to take with them. I am collecting data from all of the mom's I talk to. I have a few that do not want their name or daughter's names used - and that is fine. They are still sending me all the info I need to make my report.

Some day there will be a treatment and cure for ROHHAD.

All our love to our wonderful friends fighting ROHHAD:

Mason Byrom



Joshua Wooten


Sophia Adamo