Marshmallows....Yumm-0!

Just roastin' marshmallows in our back yard. Good Times!

Today we met with Dr. Lemole a neurosurgeon at University Medicare Center here in Tucson. Dr. Lemole has the reputation of being the best skull base neurosurgeon in Arizona. I was grateful he was willing to meet with us on such short notice not only because he is so good at what he does but also because he doesn't specialize in pediatrics...he assured us he could do the surgery without a question. Dr. Lemole saw 3 tumors, one large meningioma which is on top of the left optic nerve and two small Schwannoma's (acoustic neuromas). If we wait too long for the surgery Justin could go blind so if we decide to have Dr. Lemole treat Justin we could do the surgery in May.

We have an appt in a week with a Neurologist (Dr. Narayahan) and a Neurosurgeon @ Phoenix Children's Hospital. Once we meet with them we will decide which route we are going to take. Dr. Narayahan specializes in Pediatric Neurofibromatosis and I found his name on the NF website so I am anxious to see how we feel after meeting with him.

Dr. Lemole explained his treatment plan for Justin would be to get a biopsy then remove as much of the tumor as possible and then if there was anything he couldn't remove we could do radiation or take a wait & watch approach. Not sure how to determine whether to do radiation or leave the tumor and hope it doesn't cause difficulties down the road which could possibly lead to more surgery and radiation anyways?!?!? I'm hoping there will be a pyschic on staff that will inform us which option has the best outcome for Justin's future?!?!?!?

After Justin has recovered from the removal of the large tumor we will have to face the other issues of the two schwannoma's and his hearing loss. Dr. Lemole said we could  do radiosurgery which would stop the growth of the tumors and prevent any more hearing loss. Then there is the issue of the Sinus Disease...we have Justin on an antibiotic but he may need surgery if there is damage to his sinus's. Then we wait and watch.

Determining if you have Neurofibromatosis Type 2 can be done with genetic testing but in Justin's case it is almost a given that he has NF2 because he has bilateral Schwannomas. Dr. Lemole explained that the probability of having one Schwannoma is very rare so having  bilateral Schwannomas you almost positively have an underlying gene disorder...NF2. We plan on getting genetic testing for Justin, Logan, myself and Jason.

Thank you all for your prayers...we couldn't do without.