the big boss

this is a page from luke's homework.  he will be a big boss someday, i can assure you of that.  its just his personality.  love my lukey.

landon

i can't resist this little face.  kissing and loving him for you.

lily

lily had another appointment with the neuro-oncologist.  it was a good meeting and we are onto the next step.  i am in good spirits tonight and honestly i think its because our next appointment/procedure is not for another 13 days.  it does offer me comfort that i get spend more time with my little girl before we move on.

so, as we previously discussed, lily's tumor is sitting in a very difficult to access location upon her optic nerve.  there will be no biopsy.  no radiation.  no surgeries.  our one and only option at this time is chemotherapy.  we will start with the smallest dose and hopefully it will work its magic.  the regimen is effective in about 70% of cases.  the course of therapy is about 1 full year.

our next appointment will be another MRI, a BEAR (hearing) test, and placement of a port.  we are lucky in the fact that she only needs to go under anesthesia once to get it all done.  the MRI that we will be doing will give us a baseline since it has been about 2 months since the last one.  optic nerve pathway tumors of her type are very unpredictable.  they can stay still for years, then grow.   so, this will be a chronic condition.  one we will continually watch.  our reasons for treating are to try to shrink the tumor.  it is close to the hypothalamus and we do not want it to grow there.

we now have a nurse coordinator.  she will be assisting us with lily's care and helping me to stay organized (and sane) with all the appointments.  lily will be getting weekly outpatient treatments, via her iv port.  i am not sure how that is going to go.... the infusion takes from 1 to 2 hours.  there is also pre treatment blood work to make sure her little body can handle the treatment.  one risk of the treatment is developing an allergy.... so we will be sticking around after the treatment to make sure she does not have a reaction.   its a lot to take in...

once again.... breathe... just breathe.... oooohhhhmmmm

then there are the other three littles to care for.  oh my.  where there is a will, there is a way, right?

she is one strong, happy little girl, thats for sure.

all my love to you.

goodnight.

reflections

my past few days have been filled with inner reflections.  i have been asked about my feelings.  the very feelings that are so deep within, i can hardly reach them and pull them up to the surface.  feelings that will not be going away anytime soon.  a part of me is fearful that once they surface, they will never leave.  feelings that i am unsure if i am ready for.

these feelings come out as migraines and nausea.  they surface when i am standing in my kitchen, feeling claustrophobic and realize my ceilings must be 15 feet high.  they are suffocating.  even when i do not think i am stressed or thinking about the tumor, its there.  sitting there in the back of my mind.  keeping me company everywhere i go.

i have to understand my feelings to help lily and keep our family going. it starts with me. as a mother, i am at the core.  i need to be strong and i can not do that without letting them go.  it sounds so simple.  just let the feelings go and get on with it already. and i am trying.  i am not one to keep my feelings in.  and i truly do not want them wrapped up inside.  however, this is so overwhelming, i can't even reach it.  even trying,  i am only touching the tip of this thing.

so my focus has been on reaching inward, inside myself to see what i discover.  my feet have made there way back to a special place.  a place where i get clarity.  my yoga mat.  my one hour where i regain my focus.  i get into my flow and balance.  i cry and let it out.  its my place and its helping me.

it is refreshing to see my fellow yogis and yoganis.  to see tears in their eyes before mine start.  the warmth, true feelings.  stepping onto that mat, i am alone.  its just me and the mat.  all the others in the room disappear as i drift to where i need to be.  i am there being present and living in the now.  and that is what is really important, living in the present.

little miss standing up!

its her newest thing and she is getting good at it so fast.  today i was folding the laundry, i turned around and saw her standing there watching me.  holding on to the couch, of course.  watch out boys, this little sister is really going to be on the move soon.

chess

this has been the newest game to enter our lives.  they want to teach me to play.

hiking adventures