Dakota Goes to PCMC Tomorrow

Tomorrow, Dakota will meet with the Neurologist and the Geneticist at Primary Children's Medical Center. The EMG (electromyogram) will be conducted to see if there is any nerve damage or degeneration going on. We obviously hope that they will find the contrary. We received an email from the geneticist tonight informing us that he has not received any follow-up from his colleagues at NCI (the National Cancer Institute) about the measured growth of her tumor. Currently, the study for the clinical drug (rapamycin) has found that the drug has not been successful in treating tumors that are non-progressive (non-growing), but they are still hopeful that it can be used to prevent ongoing growth in those plexiform neurofibromas (tumors) that are progressive.

So, basically, if her tumor is not growing, they can't treat it with this drug, even though she has pain.

If the neurologist identifies some neurological deficits associated with the pain, our next step is to decide how to proceed, even if her tumor is not growing. Her doctors are already another 6 months out from available appointments, so we'll need to discuss with them when to schedule her next MRI, which will also depend on her ongoing pain.

And, we will need to bring up the fact that Dakota has those other lumps (one on her back, and three on her head - all under the skin). We pray that they are nothing, but wonder if they are related to her NF or if they are just cysts (my wishful thinking).

Lots going on...lots to learn...lots to discuss...hopefully no bad news.

As always, we will keep you informed and I will post an update as soon as we know more. Please continue to keep Dakota and our family in your thoughts and prayers. We need them and we appreciate them!

Until tomorrow...