choo, choo

our favorite little train park became even 'favoriter' among friends to share the day.

a perfect day.  one that reminds me why i love arizona.  one i hope to remember and cherish.

our lives brought us together as we began our journey as new moms.  with overstuffed baby bags and tired eyes we would meet.  i have had the pleasure of watching these little ones grow.  they may not remember, but we have the memories of them playing side by side before they could even sit up.

love to you all.

the past few days have been LONG and nerve racking to say the least.

on monday morning we were at the hospital by 8 am, there was a bit of a back up in procedures and poor little baby girl had to wait until noon before they started.  it would not have been a problem but she was starving, having been npo since 5am, and kept looking at me for some food.  i was fine until i had to hand her off.  it feels so unnatural to hand off your baby, knowing that she will be put to sleep and have surgery.  that was the hardest part of my day.  watching them take her away.  then i waited, waited, and waited.

it was wonderful to have her back in my arms when it was all done.  her port was placed with no problems, on the right side.  her MRI shows no changes in the tumor.  it is not growing, which is such a relief.  her bare test (hearing) came back completely normal.  she is one healthy little girl other then this tumor.

she did well through the night and i woke her in the morning to drive her back to the hospital for her first chemotherapy session.  i can't honestly say that i am in love with the chemo clinic.  i wish i had never walked into the place, but the nurses and doctors are so kind.  lily is greeted by name the moment we enter the door.  they are gentle with her (and me).  of course i questioned once again the absolute need for chemo.  i mean, the tumor has not grown, can't we just watch it some more.  of course the answer is....no, she needs treatment.  and as lily's doctor put it... its hard to put your head and your heart in the same place.  he is right, it is the hardest thing.  no one wants to harm her, we do need to treat it.

we walked back to the infusion area.  many of the families i am already starting to recognize.  there is another little girl, also nine months, being treated for a tumor on her liver.  and that little girl starts bouncing in her seat and smiling at the sight of lily.  future bff's?  play dates every tuesday at the clinic, maybe?

the infusion did not bother her in the least bit.  in fact, she fell fast asleep. i was able to place her in her car seat and let her rest.  she woke up when it was over, i fed her lunch, and we were off.  she was tired, but very much her happy self for much of the afternoon.  i have been giving her zofran (nausea medication) proactively. so, she has not been sick, just sleepy.

she is sleeping away right now.  i am hoping and praying that this is how it is for her.  no sickness, just in need of some good sleeps.

i would rather be playing with her and her brothers at the park instead of making visits to the clinic, but i do feel blessed that she is going through this now.  now while she is still a baby.  not missing out on school and other activities.  i see many toddlers and school aged children at the clinic.  how would you even start to explain this to a 2 year old?  how do you keep them still for a few hours while infusions are being done and all the testing.

i am glad we found this early.  i pray it works.

in her hospital gown, pre-everything

first treatment. january 24,2012

park days

every time we start talking about moving to a new house we remember how lucky we are to be where we are.

our backyard leading to a large open field and park,
basketball court,
volleyball,
the swings.

there is open desert to take little hikes in when we want to go exploring,
good neighbors,
lots of little kids.

i love our evening walks to the park.

pinewood derby

its been a busy few weeks in the lewis garage.  the boys have spent many hours in daddy's workshop building their derby cars.  drawings of cars have been gracing my kitchen table every morning. they could not wait to get started. each carefully decided on a shape and sanded down the little blocks. i had no idea how much time and dedication went into building these cars.

today was the big day.  the pinewood derby for our little tiger cub scout.  his brothers were able to race too.  fun for all.

picnic

all these little toe heads look like they could be mine, cousins at least.  but, they are just some neighbor boys over for a late afternoon picnic.

time for fun and good conversation.  let the giggles begin...

patty cake

she loves to play patty cake.  her eyes light up as soon as she hears me start to sing.  then mine tear....

i am at a loss for words lately.  scheduling lily's first chemotherapy session has left me withering inside.  its one thing to talk about it, but to hear myself say it, out loud, on the phone is something else all together.  we will start on tuesday, january 24th.

during this time, logan has been climbing into our bed every night at 2am.  he did this back when lily was born... every night, he would snuggle his way in.  then after about a month, he told me that since i was okay he was going to start sleeping in his bed again.  truly, i think he senses my unrest better then anyone else.  he is climbing in to comfort me.  my sensitive one.  i love it, but hope he does not do this for the next year.  last night, i got out of our crowded bed and went up to his.  i have not slept so sound in months.

imitations

like brother, like sister

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.