I Am Thankful

Ahhh...a busy week and a rough one to get through while fighting off a sinus infection...the kind that keeps on giving.  We left off last week with a title of "Hope" even with some unexpected and unwelcome results from the pathology.  Again, I just want to clarify that even though cancer cells still showed up in the primary tumor site, it is not known whether these cells are "active" or not (remember we are talking about microscopic cells here).  There is still not enough information about biopsies of rhabdo tumors at this stage of treatment to verify what this means.  This is not just through our doctors but all of the pediatric oncologists who treat rhabdomyosarcoma and who are a part of the Children's Oncology Group, which is pretty much all of them.  So, what am I really clarifying?  Gabriella is still showing this cancer who is boss!  This is just a piece of the puzzle and the rest of the puzzle is a thumbs up.  We are looking at the whole picture...our patient...and SHE WILL BEAT THIS!!

G getting assessed by Dr. Aftandilian and Dr. Marina.

We had an enlightening meeting with Dr. Marina and Dr. Aftandilian where we discussed the results of the biopsies.  It's always helpful to meet with our doctors because we can just frankly talk about what's going on...well, almost frankly.  We discussed G's progress, get an idea of where we're going and planned for the next steps as well as discussed the psychological aspects of this journey which I find invaluable.   I haven't seen too many doctors sit down with families for over an hour on a regular basis for discussions but from some experience, I've learned that pediatrics is a whole different ball game.  It always gets a bit difficult when we have a set of 4 year old ears that hear everything.  Sometimes we definitely need to curtail the information because she's a smart little girl and knows when she's being talked about even if she's "checked out" playing on the iPad.  I wish there was a babysitting service for these meetings but I think the doctors are really good about monitoring the conversations.  I've always been the kind of mom who tries to "tell it like it is" (age appropriately of course) so my girls grow up with only minor surprises.  For instance, I let G know that her "button" is called a port, the meds that fight her cancer are called chemotherapy, the "strings" are called IV tubing, the sleepy medicine is called anesthesia, Zofran is for nausea, beef comes from cows, etc. etc.   When she asks me a question, I try to answer it as simply and honestly as I can without giving her the need to become anxious, just so she will know.  Of course, she doesn't need to worry about things that aren't going to happen so we don't discuss those.    
We were grateful for our supportive friends and neighbors, Matt and Jen, who took care of Bridget all afternoon on tuesday.  Ellie was in the caring hands of our dear friends Sue and Rene, Mel's parents.  Adam was at work but got coverage for a few hours to drive up for our meeting.



Wednesday was another trip up to Stanford to meet with Dr. Donaldson, our radiology oncologist who is quite charismatic and has taken wonderful care of G.  She has been treating rhabdo patients for over 40 years and is a wealth of knowledge when it comes to Gabriella's cancer.  We talked about G's progress and talked about future follow ups.  She verified too that there isn't enough information on rhabdo biopsies and that the information we received about the pathology is not indicative of the outcome.  The outcome is still positive for G to be cured.                                                                



The rest of the week was spent trying to recover, rest, and have a little fun in between.  We were offered to be a part of the "Sneak Peak" for the Train to Christmas Town, which ended up being shorter than the regular version but was perfect for the girls.  They got to see Santa, drink hot chocolate and eat ginger cookies in a real train.  It reminded me of the trains in Europe and of the book The Polar Express.  I would definitely recommend it for the little ones who would like a christmas train experience.

While we were on the train, both Adam and I got phone calls from the (650) area code...the hospital.  We also received an email from our doctor stating that G's hemoglobin was 7.6 (normal 12-16) and her platelets 41 (normal 150-400).  Her ANC was 1440...not too risky but still low enough.  Adam and I looked at each other and had the same panicking thoughts...we need to get off this train!  At that point, the train started to roll back to the station (at the Boardwalk).  G was pretty pale which I noticed the night before and she was getting really tired...quickly.  I started to collectively note in my mind at all her recent symptoms...fatigue, rapid heart beat, pale.  She needed a blood transfusion.  This is always a last resort but I knew it would be in her best interest.  We talked with the nurse and NP to schedule her the next day for a transfusion.  And off we went Saturday morning to the Short Stay Unit to fill up her tank.  She wasn't very excited to go but she is so amazingly compliant that after a short explanation, she just says, "Ok momma."  After the blood was drawn and her port accessed, we had to wait a couple of hours for the type and cross where they match her blood with the donor's blood.  The transfusion started while we watched Nemo and ended about 2.5 hours after with no complications.  Time to do vitals and take her temp...37.8.  Ok, normal is 37 and admit temp considered a fever that will end us as an inpatient for at least 2 days is 38.  We checked it again 30 min later and it was the same.  Oral temp was 37.4 and axillary was 37.1.  Whew, at least those weren't higher and she was feeling great.  We got the OK to go home!  Of course, she felt amazing and was bouncing off the walls.

Bridget was pretty happy to have her sister home.  She is normally upset when her sister has to go for long days at the hospital and really misses her.  I always try to let her know the plan for the following day without upsetting her too much and she mostly replies with "No, I wan G home." or "I don(t) wan to go to de ho pital."  We're always trying to make it a "fun" time when we get to go see the fish, the train or go do something special after.  Bridget has been so great and as usual, the tension breaker around here.  She is continuing her nurturing self and is always asking to "leep in G bed".

With the holiday crazies coming, I've already planned and shopped for most of my gifts...online.  The girls have a few goodies coming and will have an amazing Christmas.  They are each getting a "room" make over including some fancy mural paintings on their wall with the help of Papa's artistic ability and my painting ability.  Hmmm...just have to find the time ;-)

My sassy girls baking with the Easy Bake Oven.

Team G's Holiday Plans
(Details in the next Blog Post)

We have a few fun things coming up for the holidays. The beginning of last week, I met with some incredible ladies and we brainstormed on how to make the holidays unforgettable.  With the continuous support of friends and family, we've already adopted 28 children mostly through Jacob's Heart.  This wouldn't have happened without your continuous help!

There's always this part of me that asks, why am I doing all of this?  I'm sure my husband asks the same questions.  Why do I feel the need to constantly keep busy?  Well, there are a lot of reasons and I've been trying to sort it all out in my mind.  It keeps the journey positive for me and for my girls.   It keeps me on task and busy because when I'm not busy, I go crazy and think too much.  It reminds me the power of a community and the strength that comes out when people come together for a cause.  It reminds me that I'm not alone in this journey.  And most importantly, there are so many families and children dealing with cancer who need much more help than us.  Just knowing what these families go through and to realize how much support we've received, it doesn't feel right to not help.  This is how I thrive.


Thankful

As we work our way into the holidays, I am continuously reminding myself of things I am grateful for.  There is a dark cloud constantly looming around our heads trying to take our happiness but we continue to push it away and let the sun shine.
I am thankful that my daughter, G who is as sassy as ever, fun loving, charismatic, always living in the moment and who remembers everything.
I'm thankful for my little Bridgy who is growing into such an amazing little sister, nurturer, friend and daughter.

I am thankful that both my girls are enjoying life and growing up together.

I am thankful for my husband who is such an active, caring and loving father and who would give the world to me and my girls on a silver platter.  

For my parents and parents-in-law who switch off driving long hours to our house every other week to make sure we are covered during long chemo's or procedures, who cook and clean and help with the laundry.  

For our furry little friend who is so loyal to our family that she will climb over a fence and run out to the freeway just to find us.
For good neighbors who are some of our closest friends that live literally right down the street and will help us in an instant. 

For getting to enjoy juicy red pomegranates with my girls while reminiscing of sharing these fun fruits with my sister and cousins at granny's house.  

For people who give their heart and soul to help the likes of others. 

I have so much to be thankful for.  

Life is a gift.