Update on Dakota

Dakota has been complaining more and more about her tumor. It is bothering her a lot more than it used to, or at least she brings it up more often. She doesn't sleep on that side. She said it hurts when she turns her head up and down, and left and right. She is sometimes in tears when we are taking her shirts off. She asks about her doctors a lot, naming each specialist by name. She talks about the shots (MRI IV's for contrast, and IV's for sedation). We think it is getting bigger, but who knows. Dr. Viskochil (from Primary Children's Medical Center - PCMC), when we last talked to him on the phone in April, said he didn't think it had grown any, or enough, since December to worry about. It would've had to increase in size by 5% to qualify for the clinical trial/study for the drug rapamycin - a tumor suppressor. He was going to send the scans back East to the National Cancer Institute to have measured. He would get back to us on that. He was also going to make an appointment with the neurologist. That is the last we've heard from him or anyone in his office. So, this last month, I started to make some calls.

We have had a hard time getting a hold of her Geneticist to make an appointment, and with her increasing complaints of pain, discomfort, tears, and questions, we had to persist. I know those specialists are extremely busy with their patient load. And I'm sure that there are other pressing matters (including patients that are more critical) that interrupt things, but sometimes it gets very frustrating when you've been told the direction they've planned to go with your child's care, and that they will get back with you to let you know when her appointment will be with the new specialists, but then they never call. After waiting for 4 months and having no contact, I had to start making phone calls. Nothing. More calls. Nothing. Emails that I had to search for on the internet. Nothing. Another Friday phone call and left message, with a little more assertion.ac Finally, Monday, a call from the receptionist with apologies. We finally got in to see some docs at PCMC.

October 6th, Dakota will see Dr. Ai Saconju, Neurologist, for an EMG (Electromyogram) Study, where they will test her muscle reaction and reflexes by sending electric current shocks into her nerves. They want to see if there is any nerve damage or degeneration occurring, yet. She will also see her Geneticist, Dr. David Viskochil, who is the expert scientist/doctor for Neurofibromatosis for a follow-up. We saw him last, in January.

I am so grateful for these doctors. Although I get a little concerned and frustrated with them and the hospital for not following up as often as they should, and at times my "Mama Bear" instincts have to come out to fight for and protect my little cubs, I am thankful that we have access to a renowned hospital (like PCMC) and it's specialists who are skilled and educated in this disease. Dakota has a long, long road ahead of her, and I'm glad that they will be with her during her childhood, pre-adolescent, and teenage years, even if my "Mama Bear" has to come out sometimes. You parents with special needs kids know about the necessary aggressiveness that has it's part in caring for our child's well-being. I am sure many of your "Mama or Papa Bears have surfaced. Now that I think about it, all mothers of any child, anywhere have had to bring out the claws at times. Go Mamas!

Thanks for your continued support. And I pray for you, as well, amidst your challenges. We will keep you all posted as we learn more.