Left Ear/Neck Plexiform Neurofibroma
Nothing from the National Cancer Institute (NCI) yet - they are doing volumetric measurements of of this tumor, which is still going through an active growth phase. Hopefully results will come soon. Finally.
The bigger red circles are around the plexiform in Olivia's left ear/neck- the two pictures are different frames from her last MRI. The dark mouse-like shape in the left picture is Olivia's throat & the picture on the right is closer to her spine.
Even without the NCI's measurements, we are certain the plexiform is still growing. It's become more obvious when looking at Olivia's {beautiful} face. However, we won't be doing any treatment at this time. Surgery is not an option- tumors grow on nerves which would cause facial paralysis if damaged. It's not interfering with her mouth or throat. It causes pain, but not constant or extreme. It is causing her ear canal to narrow and should it close, then we would do a debulking surgery to open it up.
After reviewing different chemo options with Olivia's doctor we feel like they aren't an option at this time- results of past studies aren't promising enough & scary side-effects. There is a MEK-inhibitor trial going on right now where some kids are seeing excellent results- reduction of tumor size which hasn't really happened before. However, Olivia's doctor feels it's better to see what happens with puberty over the next 3-5 years and the medical community can get a better look at how the MEK-inhibitors work and in that time there may be other drugs in the same MEK-family that come up & work better.
Soooooo......... wait & watch, watch & wait....... and fret & worry.
{{{puberty causes hormone surges and this causes tumors to grow - not a good time for NF kids}}}
Other plexiforms:
The smaller red circle in the left picture is another plexiform growing on a nerve in the collarbone area- there is some concern this is causing a slight weakness in Olivia's left arm & hand- we've been watching it along with everything else.
Olivia's left eyelid plexiform does seem like it is growing as well- the eyelid looks a little fuller, but it's not pushing the eyelid over her pupil when she looks straight ahead & she's not tipping her head back to see better. We check in with her facial surgeon this week, but it's unlikely we'll do anything about it.
Light-sensitivity & Migraines
Olivia eyes are extremely sensitive to light causing headaches, and she gets headaches more frequently anyways, and nasty migraines more frequently. We went to a neuro-opthamologist and essentially Olivia has an NF brain and a migraine brain- a double whammy of bad headaches & migraines. They were willing to prescribe a stronger medication, but so far ibuprofen works well when needed.
Otherwise we do what we can to help her have a healthy brain- eat well, sleep well, exercise daily, and so on. We also keep sunglasses & ibuprofen with us all the time- just in case.
Physical therapy & orthopedics
The x-ray shows Olivia's scoliosis. 13 degrees is minimal- they don't look at bracing until it's 20-30 degrees. With NF, there is a bad kind of scoliosis and a less-bad kind. Because Olivia's vertebrates are looking good (edges aren't crumbling) and she's older than when the bad kind typically shows up, the doctors believe she has the less-bad kind. This is another thing that could be hit hard with puberty & all that bone growing that goes on.
Olivia recently finished up a round of PT. In addition to weekly swim lessons, more swimming, and gymnastics, this has helped target some of her weaker areas. Over the Christmas break Olivia did a complete cartwheel- hand, hand, feet - and stayed on her feet at the end, and she also recently passed the green level of swim school. She has been working on both of these for over a year- amazing accomplishments!!!
ENT & Speech
I don't remember if I posted about Olivia's surgery follow-up with the ENT, but it happened a couple months ago. Everything was healed and looked great. We feel like her speech has improved and the numbers on her testing were way better. Now that she's on a PT break, she'll start speech again. There will be some pronunciation work, as well as language work.
Learning
Olivia does have learning challenges. She did follow-up neuro-psych testing this past fall- we do them every 3 years. The results help me have an idea of her weaker areas, as well as give me learning strategies to help her learn best. But she is always making progress and that's the most important thing!
I think that's all the nitty-gritty mumbo-jumbo
What else? Olivia is fabulous!
She runs & plays & swims & laughs & cries & fights like a typical 9 year old. She loves putting together outfits. She's always begging someone to play a card game with her. She likes to get her list of daily things done early so she has the rest of the day to do what she wants. She watches hockey with Kurt and nature shows with me. Reads with Austin and draws with Nyah and has the most imaginative games with Jolie & Sophie. She remembers all the details about where we're going and what we need to take and when we have to leave.
We love our Miss Olivia!!
