Well, we went to Neela's ENT appointment at Mayo Clinic yesterday. Bart and I were able to take Neela by ourselves, since my dear mother-in-law Judy, stayed home with the boys. We were able to be seen right when we arrived at 9:45. Our appointment wasn't until 10am...WOW! I thought this day is gonna be great :) The resident ENT examined Neela first and basically got his first introduction about LMs from Bart and I teaching him... and the drug Ok-432. Each and every time a doctor examines Neela they have to ask questions about her health issues. Neela's eye came into the picture quite a few times in the room yesterday...I think its because Neela was placed with two birth defects that are so extremely rare, they have to almost instantly try and figure out why and how that happened? I am really surprised they didn't want to test for any kind of 'syndrome' or deformity in addition to her LM. Well, let me say that whatever they would label Neela...I don't care at this point....We are her parents, we love her whatever may be the case with whatever syndrome she may or may not have. Finally, the ENT doc came into the room. She seemed rather nice and very patient. The first thing she asked us was, "What are your goals and motives for today's visit with Neela?" I began to ask, "Well, we are wondering about a plan for Neela's LM now or even in the future.' I also asked what treatment methods they use at the clinc. As she was finished with Neela's exam, she began to go into some of their methods they use at the clinic. One was surgery, they would extract all of the LM cystic tissue from Neela's neck. Basically means, all the large and small cysts that make Neela's area below her right ear puffy...would be gone! Also means, that Neela would forever be scarred right below her jawline. It would almost be like when someone has a face lift. I asked if there would be a risk of regrowth? She said it was highly doubtful in her case. I asked if there would be risk of her carotid nerves and arteries. She explained that there would be a risk since the LM (cysts are intertwined with the nerves and main facial artery.) Meaning...if something were to go wrong, Neela would have no movement or function of the right side of her face. Her second option of treatment would be alcohol or doxycycline sclerosing...which is more similar to Ok-432, but it can be a bit more irritating to underlying tissues in some patients. Her third option was sending us to the "Cities" - Minneapolis to see if Neela would qualify for another round of Ok-432, since they currently have a clinical study site there similar to UOI and Dr. Smith's site. This was amazing her hear, that there is possible hope for her to obtain another dose of Ok-432 if needed now or even in the future that was so close to us. She began to lecture to us about not needing to do anything with Neela at this point, since she wasn't symptomatic. This I totally agree with...since she was only sick a few times this past Winter/Spring, and one was just a gastrointestinal infection. She said that it was our decision either way, we could get a baseline MRI to see Neela's progress thus far. Then she said we could contact her whatever we decide, but nothing needed to be attended to right then and now. She also said, "Its not like she has cancer," which later I remembered these words. She said that we should schedule a 6 month follow up with her at the end of the appointment. Finally, she asked if there were any questions. I looked over at Bart and he was biting his lip rather tight. I instantly though, "Oh crap, what is he gonna do or say" :P I assumed he wasn't happy. He just came out and said, "I just wish we were back in Ia City." She smiled and left the room while giving us her contact info. I turned over to Bart and asked him what he was thinking? He began to explain that he was having extreme feelings of sadness and anger. He said, "Yes, she doesn't have a diagnosis of cancer...to me, as her dad, this LM is cancer." He began to vent that we should have never left UOI with Dr. Smith's care. His hands felt tied, as well as mine. Dr. Smith's goal was to have Neela's overall appearance to look at normal as possible when she starts kindergarten in a few years....we figure she is gonna have enough to deal with wearing a patch in school. I thought it is not about looking normal...its about addressing our overall needs and comfort of feeling like Neela's situation is being attended to, and not being dismissed. To follow up in 6 months kind of feels like your being put on the back burner 'til something bigger arises with her. We don't want that something 'bigger' to happen. Neela was due for an MRI in January with UOI, but had to cancel due to the insurance/job change. After talking with Bart, our plan is to get Neela an MRI asap. Our plan is to find a clinical study site for Ok-432 in our area. If we don't find one, we travel back to UOI and fight throughout the costs. In the end, we need to make sure that all of her macrocysts are completely gone. Bart and I aren't emotionally/mentally prepared for our daughter to go under the knife to repair what could be dealt with Ok-432 (well, the large cysts anyways.) So as of right now we are in the process of conversing with UOI and trying to find a contact at the Minnesota Children's Hospital in Minneapolis. Our main focus is to keep our faith going through this process, since we need HIS guidance more than ever now. Keep on praying for Neela's journey....it is gonna make this hurdle more bearable.
