NF Forum 2016

What a blessing it was to again have the opportunity of attending the NF Forum in Texas. We could not have done it without the generous help from Angels Hands. 

At the Forum we had the opportunity to meet up with other families that had a child or they themselves had NF2. Ricki finds much encouragement and hope as she spends time with others that understand the challenges she faces. It is also an opportunity to meet drs that specialize in NF2. Although we have wonderful drs here in the salt lake area we really do not have neurologists that really specialize in NF2 and have a full understanding of the patient as a whole. This year they gave individuals opportunities to sit with the drs during lunch and ask questions. I found it so helpful and reassuring to have connections to specialists that we can go to for second opinions. 

Ricki did not feel well for most of this forum and had not been at Dr. Blakely's lecture. I had really wanted ricki to meet Dr Blakely but she had a seizure and wasn't up to it.  When I mentioned it to dr Blakely she asked if it would be ok if she came up to meet with Ricki in our hotel room. I was so touched by her kindness. Ricki has been struggling with hot flashes and increased seizures lately and Dr. Blakely gave us some guidance as to which direction we should go. She write down the name of some blood work to request for Ricki's hot flashes and then also felt that Ricki might have something called POTS. She said she had seen quite a few patients with NF2 that also suffered from PotS. She gave. Ricki a list of things that she felt could help. She gave us her email and information on how to send her MRIs and see if it would be worth a trip to John Hopkins.  I had been told that unless Ricki started having hearing loss in her good ear that she didn't qualify to go on a trial for a medication that they are finding will shrink tumors in some NF2 tumors. I was excited to find out if Ricki has had any growth whatsoever in her vestibular schwannomas she can qualify for the treatments. I also discovered they should be doing a volumetric study on those tumors as well to get a better picture of growth. 

We definitely came away feeling blessed and grateful for the opportunity.

Having fun at the photo both.