Saturday, November 10, 2012
After talking on the phone via our FaceTime with daddy, Bridget, Grandma and Grandpa tonight before bedtime, G became sad and started to tear up. I asked her what was wrong but I'm not sure if she could find the words to describe how she was feeling. I asked if she missed grandma and grandpa and she said, "yes" in her calm sweet voice with tears bundled up on her cheek. She said she missed daddy and Bridget too. I told her it was ok to feel sad and it was ok to feel frustrated that she wasn't at home but had to stay in the hospital. I reminded her what a strong, brave little girl she is and how proud I was of her for fighting this battle with such grace and determination. I reminded her that for every bad moment in this journey, there would be so many countless good memories that will take its place. After we talked for a moment about the good things that were coming up like Disneyland, her birthday and Christmas, she drifted off to sleep. I kissed her precious little bald head and tucked her in.
THE WEEK'S BEGINNING
Monday morning was pretty calm as we got G ready for the hospital. Grandma and grandpa arrived the day before to help us with Bridget. Even though we had a great dinner, G wasn't eating much. Since she just filled up with milk (and she loves her milk), she told me "Mamma, I'm already full...see how big my belly is" and show me her belly while she bounced her finger off of it a couple of times. She knew she wasn't going to be able to eat in the morning and she was ok with that. G and Bridgy were having so much fun before bed with grandma and grandpa that going to bed was the last thing on their mind. The day of her procedure came and I had a surprise for G. I asked "Squishy" (aka Sarah) if she was going to be around campus that day. Squishy was waiting at the hospital when we drove up, and needless to say G was pretty ecstatic. Bridgy was pretty happy too. The usual happened with pre-op and went smoothly. After Adam took G back to the operating room, donned in the space outfit he needs for the sake of keeping sterility in the OR and watched as G was put into her medically induced sleep, Sarah and I watched as Adam joined us, rattled with foggy red eyes. It's never easy to leave your child in a room with a bunch of surgical staff wearing green scrubs with their faces covered in masks and heads covered in caps. All in all, G did great in the procedure, about 10 biopsies were taken from little polyps remaining from the tumor (similar to what they had seen upon her previous exam) and the results for these will be back next Tuesday.
We had a night of recovery on Monday, relaxing at the park on tuesday, so we could be ready for chemo on Wednesday.
THREE DRUG CHEMO #10 (of 14)
We checked into El Camino on Wednesday, a day early for her three drug chemo. Prior to that, she was scheduled for her chemo this coming Monday but since she has been recovering so incredibly well via her immunity and blood counts, the doctors decided it would be best to bump her up and get number #10 under our belt. It's getting harder and harder to get G to El Camino because it's "the big hospital where they make my tummy hurt" but she's so damn compliant and trusts that we're doing what we need to do. This was probably the roughest chemo that she's had since the beginning. After the vincristine, dactinomycin and cyclophosphamide were in, it took about 4 hours for her to start throwing up. It just came out of the blue while she was painting. This time we were trying to be more prepared and despite the ativan, benadryl, and a new anti-nausea med called kytril (to replace the zofran), she still threw up...more than once. She didn't cry, scream or holler during any of it. Just threw up and went back to resting after I cleaned her up. Aggravating is the best word to describe it...just aggravating to watch your child have to endure this.
She normally pee's every 2 hours because of all the IV hydration she gets but her little body just needed to hang on to the fluids after all the vomiting. It wasn't until about 4 hours of no urine when I started to get concerned. The medication, cyclophosphamide is very toxic to the urinary tract (which is the reasoning for the 24 hours of IV hydration plus another medication called mesna to help protect her bladder) so they want her peeing at least every 4 hours. After bringing this up to the night nurse and asking for a fluid bolus, she finally started peeing again, every couple of hours.
Normally we are scheduled to leave for home the next day but this time was different. G just wasn't feeling well and wasn't all that excited to drink anything. Our nurse practitioner, Christy, mentioned giving Gabriella steroids (decadron) to help with the nausea. After much thought and G not seeming to get better, we took this route. Apparently, a small dose of steroids help heighten the drugs ability to work. Ok, let's try it. Most of the day went by with coercing her to take little sips of water and apple juice. Finally the drugs started helping and she started eating a little more. This wasn't till the later part of the day after we decided she should probably stay for more hydration overnight. A couple of goldfish and wait about an hour...ok, good. No vomiting. A couple of strawberries....that went well too. Great, we are getting somewhere. She wanted to eat so I let her. After more snacking on chips and pirate booty....uggg....it all came back out. Damn it. Damn it. More meds, more pee, throw up on my jeans (whatever), cleaning up vomit off the floor, changing sheets, etc. etc. She was off to sleep again. My poor baby girl. It was just brutal.
Forgot to mention being put on contact precautions because she was having some GI issues and they now needed to rule her out for c difficile, which can cause serious bowel problems. She couldn't leave the room at all until she was cleared. Since there was no more stool to sample, she pretty much got ruled out by the time we left.
The one thing that always rattles me and unnerves me is the smell...the toxic chemical smell after receiving her chemo. It's in her urine and it's in her throw up. Really? This shit really goes into my child? This toxic poison.... I can't even go there.
This time, some pee hung out on my arm a little longer than it should have. My skin started to burn slightly. These kinds of things can make someone go crazy. The fact that we allow these drugs to be given to our children because the alternative is much much worse. It just blows your mind.
Friday we finally got to break free and come home. G was so excited and as soon as we hit the fresh non-hospital air, she was back to her little chatty cathy ways. Even though it was much colder, the cool air was welcomed and made us both feel alive again...hopeful.
Grandma and Grandpa bought an incredible swing set as an early Christmas gift for the girls. So, daddy and Grandpa worked hard to put it together in between rainy weather. The girls were so excited and were out in the yard having a great time. I'm sure it wore G out because she came up to my bed, where I was trying to take a nap and crawled right next to me. It didn't take her long before she fell asleep and we both slept for over an hour. Adam and I got to get out for dinner but got word that G had thrown up a couple more times. Grandma and Grandpa had it under control but it's difficult to continue enjoying time out when our little one was throwing up. Home we came.
After such a long week, I was pretty much drained, emotionally and physically. I received an envelope in the mail from my college sorority. It was a check, probably the biggest donation we have received. I was speechless. I started to read the letter to Adam and burst into tears. Having just gone through hell for the last few days, it just reminded me that there are so many caring and passionate people in this world...and they are helping us through this. An amazing friend Jennifer Rappeport and member of Alpha Phi, my college sorority has been diligently following Gabriella's story. With such heart and sincerity, Jen contacted the foundation to secure a donation for our little fighter Gabriella. I'm just speechless Jen and I can't thank you and the Alpha Phi Foundation enough. Many times I have though that "thank you" just isn't enough to let people know how much we appreciate the passionate efforts of support for our little girl and our family. I am more than humbled and grateful for these people who have stood by our side and often, carried us through the rough times.
Sometimes it takes a horrible situation to make you appreciate life and the people that surround us. I will never forget how many people have touched our lives through this journey. Never.