Saturday, September 21, 2013

Post SCAN...CLEAR results!!!

So, I thought Gabriella would bounce back enough to attend a birthday party the day after she went under general anesthesia, had basically an adult size dose of Versed, a CT, an MRI, an exam and a trip back and forth from Packard.  And then I had the nerve to get upset with her when she stood behind me and didn't want to play with the other kids.  We both ended up in frustrated with each other and in tears walking out of the party early. Boy, do I feel like I deserve the "idiot parent of the year".  I'm so sorry Gabriella.  Mommy doesn't always make the best decisions for you.  But I will always try my very best.
I want so badly for her life to get back to "normal" again....whatever that means.  In my mind, I think "Ok, scans are just going to be one day for her and she can pop right back where she left she didn't miss a beat".  Obviously, she needs some recovery time; a part where I lack.   Looking back, I realize that I get frustrated and upset with cancer....and that my G had to deal with it.  


Adam, G and I headed up to Palo Alto the night before because we knew Friday was going to start early.  Luckily my mom came down to be with Bridget for the night.  It's not easy to have a sibling in the hospital as much as we like Bridget to be with us.  They don't let her go into certain areas and Adam and I both want to make sure we focus on G to get her through these procedures.  
I think the girls enjoy the time spent alone with parents and grandparents so it always works out.  We arrived early and did the usual to prep G for the day.  But this time was a bit different because she has no port to access for anesthesia and had a slightly different procedure to get through.   That means we induce with sevoflurane gas for general anesthesia.  Let me tell ya, once you smell this gas, an association begins to build.  It brings back some painful memories from the beginning of this journey.  I despise the smell.  Anyhow, this time we had to do a CT scan with contrast...meaning she needs an IV for the procedure.  Then the decision of whether to give her a pre-med or not comes into play.  Well, we decided on the pre-med.  At some point when I left to use the restroom, the nurse comes in with the versed.  Adam asked how much and she said it was a normal dose.  This is where you would like to  trust that the nurse giving the med know's how much she's giving or the doctor ordering the med knows how much to order.  G ended up getting an adult size dose and was so loopy for the following hour.  She watched as the nurse placed an IV in her arm (to place the contrast and induce her for the MRI) while blood was running all over and both "medically trained" parents were trying to lend a hand to the stumbling nurse while everyone was trying to stay calm and G was looking at the "things crawling on the walls".  The CT went smoothly (as G was off in lala land) until her IV started to drip contrast.  Luckily the scan was already complete.  And the IV was taken out.  Bummer...back to a mask induction of the gas.  

After G completed her scans and exam, the doctor came in to tell us...."Good news"....  It's the best when they come in before even sitting down to tell us there is good news.  "Everything looks great and her body is healing well."  So, I she's healing and the cancer isn't there anymore?  Correct.  The doctor was confident and happy to report her findings.  Ok, perfect....perfect....perfect....perfect!!  This is the best news anyone could ask for.  One result down and a meeting in the afternoon.  We met up with "Squishy" and had a bite to eat in the courtyard as we all tried to make sure that someone was hanging on to G to keep her upright in her still loopy state.  

Again, our doctor Catherine came in....said to us, "The scans look good".  That's pretty much all I needed to hear.  But just to clarify...."the scans were clear....everything looks good....?"  YES!!  Clear scans and a clean bill of health.  The meds would wear out.  This kiddo is doing it....she's kicking cancer's ASS!!!!

Needless to say, we weren't very happy with the dose of Versed...but the fact that her SCANS ARE everything we could have hoped for!  

Friday, September 6, 2013


This past two weeks has been an adjustment to a new schedule. I would say busy but I think back to what we were doing this same time last year...we were in radiation treatment for 6 weeks....every day. And every day it was the same routine. We would drive up to Palo Alto for her early appointment on an empty stomach (NPO in sympathy and comradery for her), take her to the radiation area at Stanford and into the room where all the radiation techs would wait for her, lie her on the hard table and hook her up for sedation.....  And we would watch as they put our baby to sleep....every day....for 6 weeks. Off we went to the waiting area. I still remember the red flashing light that said "beam on" which would flash and buzz every time the beams of radiation would hit her. "Beam on....beam on".  When she was finished, we would wait to hear her heart beat on the monitor as they wheeled her down the hall from Stanford to Packard's recovery area....still in a stupor from the sedation.  We got to know everyone so well in the recovery area that they would know our routine....a cup of hot water so we could warm up her milk and have it ready when she woke. She lost so much weight during radiation to the point where they wanted to put a tube in her nose.  But we quickly found tricks to help her gain weight (olive oil) and vetoed that idea. 

This is why during the craziness of back to school an adjusting to a new routine I remind myself how completely grateful I am for these moments. I remind myself where we were last year and every day I have to wake everyone up for school (including myself), pack lunches and do homework, I remember this. I want to jump up and say "halle...freiking....leula!!!"  We are here. We are well. And we are thriving. I am SO thankful. 


Special bracelets from their counselor "Dori"

This past Labor Day weekend we spent up at Berry Creek sucking up every enjoyable moment with our girls, marveling at how much they have grown this past year.  Again, I found myself comparing the present moment to the state we were in last year.  We saw many familiar faces and made connections with new families.  It was a completely different experience...and we thought last year was great!  The thought of being tired or exhausted didn't enter our minds during G's treatment, especially during radiation.  We just couldn't go there because we needed to stay focused and stay on task.  It wasn't an option. To this day, I still won't let those words "I'm tired" enter into my mind very often.  It's interesting how many habits we formed during treatment that we find have been difficult to break like having my phone by my side at every moment...just in case I got the "fever" call.  But, I was able to leave my phone in the car for the weekend....and spend a few moments "happily" tired.

We spent the weekend enjoying....just enjoying.  I was most impressed with Gabriella's courage to take on the zip line and the ropes course!  I thought for sure the Bridget would be the one zipping through the forest but to my surprise and Bridgy's pleasant, "No thank you mommy", G was the one who wanted to go.  She was hesitant at first but only for a moment.  I could see the confidence she gained that day after overcoming this challenge and a couple obstacles at the ropes course.  She climbed about 30 feet up a tree and proceeded across a cat walk but fell off graciously and was lowered to the ground.  I could see that she was so proud of herself and we were all in awe, including Bridget.

The girls were so worn out but couldn't resist the big dance party on the last night.  Talk about a new experience.  Watching the camp counselors and their favorite counselor this year, "Dori" taking our girls out onto the dance floor to dance the night away was another highlight.  We had met the fantastic duo last year..."Squishy" and "Dori" but Squishy stole G's heart.  She wasn't able to make it this year so Dori stepped in and had a blast with the girls.  Bridget ended up falling asleep on our shoulders and G danced till the end of the party.  It brought tears to our eyes just watching how far she's come in the last year.  From being a pale, thin, bald and emaciated child the previous year to this beautiful confident, tan, and blonde young girl just struck every emotional cord in us.  I think daddy was more overcome but we were definitely celebrating.

It poured down rain that night...all night and we were out in the tents.  Since neither of us thought to check the tent before we left, we ended up with the 3 man (small) tent.  Adam happily slept outside for the first two nights but we all crammed in the tent on the last night to keep dry...somewhat dry.  But, we really didn't care.  We were all having so much fun that the size of the tent or the wrong tent didn't matter.  It was a moment to truly enjoy.


Just the other day, a friend brought up our upcoming scans. I haven't had a moment to think about it and frankly have been keeping myself so busy that I haven't given it more than a thought. Thinking about it too much makes my stomach turn and makes me nauseated. So, I push on and realize what I have here in this moment. My girls are healthy and thriving. They're amazing. Gabriella has overcome such trying times and she's done it with grace and beauty. I look at her and I am awestruck with inspiration.  Bridget has turned into a caring and incredibly supportive little sister.  She is always so thoughtful and still does whatever she can to "please" G.  I'm thinking some of this is a little sister thing but I know these two have already been through a lifetime together. 

September 20th will be the day of her next scans and exam....all under anesthesia again. I hold my breath until then reminding myself every once in a while that I still need to breathe. Breathe. She'll be ok. I continue to keep myself busy until then and continue to use all this couped up energy and nervous anxiety to do good continue to establish a good and positive name for Team G Foundation....let others know that they are not alone in this grueling fight and continue to honor those stricken by pediatric cancer.