Dakota's Follow-up at PCMC

Dakota had a 6 mo. follow-up visit in the NF clinic at Primary Children's Medical Center Tuesday afternoon (April 13th).  We met with Dr. Viskochil and several interns and colleagues.  Overall, it was a good visit.  As usual, the doctors and counselors were very thorough and are genuinely concerned about her progress.  This was the first appointment we since her diagnosis that we have not had any looming or immediate concerns with Dakota.  We have not noticed as much growth in her tumor, nor any new symptoms/difficulties within the last 6 months.  Of course the next MRI will tell us more, but from the "outside", new growth appears minimal.  Her pain has not decreased, but it has not intensified, either.  Yesterday, she woke up laying on the side the tumor is on, which Dakota usually avoids at night.  The fact that she is able to "sleep through" the pain is good, because it shows that she is tolerant of it.  She is doing really well in school.  Her ballet and drama classes are keeping her moving and involved.  So, for now, she is going on with her "life" and is happy.  Good news to Dr. Viskochil and his team.  The fact that she is already past the risks for leg-bone and facial bone abnormalities, and that we are closing in on that time-period for the risk of scoliosis, as well as the optic nerve tumor (meaning we are almost out of the woods for those complications), keeps us and the doctors very optimistic.  Still, we know that the coming years (and the rest of her life) living with this disease is not without worries.  The plexiform tumor that Dakota has still puts her at very high-risk.  Only 5% of NF patients get these kinds of tumors.  We will have to watch it.  Most of the time, these types of tumors go through growth and non-growth phases.  They never know exactly what they are going to do.  In one case, Dr. Viskochil has a patient who's plexiform tumor grew and grew and then just stopped.  It hasn't moved in years.  This is an anomaly, but not impossible.  Will Dakota's tumor continue to grow (sometimes faster, sometimes slower)? Or will it just stop all together?  We watch it.  In the meantime, we look for other abnormalities.  We continue to find more neurofibromas popping up all over her body.  Most of them, Dr. Viskochil has had to point them out to us.  They are just he beginnings of little tumors on her chest, tummy, and back.  The three lumps on the back of her head are still there and occasionally cause pain, but usually only if they get bumped or if Mom brushes her head too hard there.  We will leave them be for now.

The next step is to get the MRI.  We will schedule it for sometime in the next few weeks.  We like to schedule them for a Tuesday because that is the day the surgeon/colleagues are in their PCMC offices and can do an consult that same day after the MRI.  That way, we fit as much in on our visits to the hospital.  Poor Dakota is often still groggy from the MRI sedation when we meet with the surgeon a couple of hours later, but it's nice to get it al done.  With Darin's traveling (he's gone ALL the time), it will prove to be difficult to find a Tuesday that he will even be in town for it.  I may just have to take her myself and hope for the best.  It is starting to become more routine now, and I would be fine taking her up for the MRI myself, but it's nice to have the support.  Especially with consults, it's better to have two sets of ears than just one.  The other person often hears different things or understands things differently than you do.

We feel blessed that Dr. Viskochil said that thus far, Dakota is not following the "norm" as a patient with this disease.  She is very social and not withdrawn as most are with NF.  She is doing well in school and if any learning disabilities were there, we would probably have noticed them already.  She is happy.  She is good for now, however...we do not want to become too complacent.  Anything can happen.  Changes can pop up suddenly.  We need to be prepared.

We thank you for your continued support, thoughts, and prayers.  We have felt them, indeed!