IVIG Day.....spending the day at Primary Childrens

We are spending another day at Primary Childrens.  Today is for a round of IVIG.  Haven's levels were around 220 this time.

We've been doing this now since 2007.  Yes it does get old.  My daughter was 3 when we finally found the tumor and got a diagnosis and she has endured surgeries and chemo since.  I spoke with our oncologist in Connecticut and she informed me that the reason we are still doing IVIG is not because of the Hi CY but because of the Rituxan.  Which kinda shocked me.  I figured it was from the Hi CY we did in 2009 when we wiped out her immune system.  But she had about 9 or 10 doses of Rituxan and you're supposed to only do 4 - 5.  Since it's a new chemo there isn't much history on it....not to mention no one else has used it for ROHHAD the way we have.  So as of now no one knows when she will be healthy enough to not have IVIG.

In March we ran a lot of labs to do a full work up and found out that Haven's calcium was scary low - normal is 9 and she was at a 6.  This can cause heart failure and such. So she was immediately put on an enormous amount of calcium and then was retested a week later.  She has since been fine.  But we did find out that her growth hormone has dropped even lower and we will be meeting with Endocrine to start on growth hormone shots.

During the past few months Haven was living with her Grandma in Virginia and she started this no sugar - extremely low carb diet plan.  Amazingly - Haven has lost 24 pounds and just lost another 2 pounds this past week.  She has started walking 1 mile a day on the treadmill and is even starting to play games and throw balls with her sister and brother.  This is insanely different than the "usual" Haven.  Her blood pressure has stayed around 98/60 and her O2 levels haven't dropped below 97 in a year.  We will be doing a sleep study in the next couple of months just to get another baseline reading.  But I do not foresee any issues there.  We are so proud of her.

So I'm finally writing in this blog.  I figured with the amount of ROHHAD families that still find me it is best to keep this updated and informed and hopefully help more families along the way.  I will be putting our family updates in my family blog - keeping medical stuff separate.  (Wylene - make sure you check there.  If you need our address for Haven let me know - we've moved a couple times this past year).

Again - I would like to have everyone to please put these kids in your thoughts and say an extra special prayer for Reagann as she will be receiving her 2nd dose of Hi CY at Hopkins tonight.  Please send her a card or two....it really cheers these kids up.  I will keep you updated on Reagann and other kids as I can through this site.  I'm starting to get a few minutes to myself each day and get to turn on a computer!

Love to all!