Our site dedicated to Gabriella Cosner,
our oldest baby at age 4 who was diagnosed
with rhabdomyosarcoma in March 2012.
WE WILL FIGHT THIS!!!
Monday, September 10, 2012
Things one never thinks about
...a title used from another cancer momma's blog but so fitting.
G and I spent a Wednesday through Friday up at the RV park while Adam stayed with a sick little Bridgy. We were all going to go up together but since B was sick, we wanted to keep the girls apart...a heartbreaking task but we didn't want to take chances. G was able to get her chemo on Thursday just barely making her ANC count of 770. The cut off is 750. We were hoping she was able to get her chemo so we can start giving her they GCSF of shots and hopes of boosting her immunity to fight whatever infection that Bridget has. The doctor says the shot boosts her bacterial fighting ability but not so much for viruses. For my basic knowledge, it boosts her WBC count and that works for me! Trust me, Adam and I hate giving her shots but we know we must.
Waking up Thursday was tough, as it has been on this particular day of the week. G wasn't particularly excited to wake up early so I bribed her with a trip to the gift shop. Whatever it takes. We went to the Bass Center at about 8:40am to get G's pre-hydration started and labs drawn before we got to radiation for the usual procedure; get to the pre-procedure room, visit with the nurse and anesthesiologist, walk to the radiation room, get hooked up to the IV, monitor and blood pressure cuff, wait for the med to kick in so G can tell me when she's dizzy, lie her limp body down in the uncomfortable treatment position, kiss her on the head, walk away and hope that she'll be ok. As I leave, the doors close and eventually the "Beam On" light starts flashing with a distinct hum from the machines. This is when the treatment has started. It's torture hearing this hum and watching the beam on light flash because you know that dangerous waves of radiation are entering my little girls body.
I wait in the hallway for the sound of G's heart beating on the portable monitor that signals she's done with her treatment, walk down the hall with the nurse, anesthesiologist and my G asleep in the gurney, break off to get coffee so they can settle her down in the post-op, visit with Pam in the waiting area and wait to be called back. She's normally still asleep by the time I get into the post-op and I wait for her to wake up. The nurses in the post-op area have been so amazing. We brought them doughnuts and they were pretty excited. Once G woke up, I got the news that she made her counts and she was able to get chemo. So, we were transferred to the day hospital. We visited with G's doctors, Dr. Marina and Dr. Aftandilian and chemo was given at about 1:30pm. SInce the cyclophosphamide is toxic to the bladder, she needs to get pre and post hydration and a medicine called Mesna (which helps protect the bladder) at the time of chemo, 4 hours and 8 hours after chemo. The day hospital closes at 7pm so the plan was to send us home with Mesna. Apparently it doesn't come in a liquid form but in a big pill form. G has never taken a pill before so the wheels start turning as how I'm going to give her this after her chemo when she feels nauseated and is tired from such a long day. During our waiting, we watched as one family left, another one came in and left, and watched the sun set from our window. We played games, read books and watched a few movies. Finally we were able to get back to the RV and work on taking the pill. It took about 45 minutes, with coercing, bribing, crushing the pill, mixing it in frosting, putting it in milk. She took about half the pill and fell asleep on the couch. Hopefully that would be enough.
I have an overwhelming sense of rejuvenation today as we complete chemo #7 (of 14), radiation day 24 (of 28) and total week 23 (of 42). I feel like we're over the main part of the treacherous mountain we've been climbing and working toward our decent. Those of you who know what it's like to climb a mountain know that the decent is just as important and still very difficult. Another amazing cancer momma told me that you tap into some incredible superhuman strength when you're child is fighting cancer. It's something you've never experienced before and you do it because you just want to make sure your child comes out OK. You do whatever it takes.
I've seemed to tap into that strength but today I feel especially empowered. Maybe it's because we see a little glimpse if the light at the end of the tunnel, maybe because we have the feeling that G IS going to come out if this ok...we all are, but today I'm especially overwhelmed and touched by the outreach from our community. I'm almost on my knees with tears in my eyes from the outpour of support we've received today. I'm overwhelmed with how many people want to get involved and fight for these children and their families fighting cancer and I am so incredibly honored. As most of you know (and many of you have been heavily involved) we've been working hard to get this bake sale together and spread the word about childhood cancer awareness. Being a part of the pediatric cancer world has opened my eyes up to childhood cancer. To read, hear and see what these kids endure on a daily basis is heartbreaking. Planning a bake sale is really nothing compared to what these kids go through every day. It's the least we can do and if I can make a difference in my child's quality of life and the lives of any other child enduring these treatments, I will. Last week, I received a call from Bonnie from Santa Cruz Sentinel who wanted to write an article on the bake sale. I was happy to talk with her and rally some friends and their kids to take a picture for the article. After long day at the hospital for G and a sick little Bridgy, we rallied the kids for the picture. With G feeling particularly shy that day and Bridgy not feeling well, I knew we weren't going to get them in the photo without me getting in it too...not my original plan but the article and photos were amazing and captured a moment in time...one that I will not forget. We got to have Charlie Cross in the picture, a Santa Cruz local who is a recent survivor at almost 5 years old and little warrior. Momma Angela has been an amazing source of information and strength for me through this journey. We were able to gather pictures of some of the precious kids who have recently lost their fight with cancer, Jack Bartosz and Tianna Valdez, and Liam Witt with mom Gretchen who founded Cookies for Kids' Cancer and were able to honor them by holding their pictures during the photo shoot.
We came home on Friday and the girls re-united. It was so amazing to see and Adam and I just basked in the moment. Still being very cautious about every sneeze and cough, we were armed with our hand wipes and spray. I had to switch gears into my business life in order to prepare for a small wedding cake and cupcakes for the next day. Ugg. This was an order I took a long time ago thinking we would be well done with radiation by this time. I was tired but got through it. Heidi come over to watch the girls so Adam and I could drive to Mission Ranch in Carmel and deliver the wedding cake/cupcakes. We got a date night out of it so it was every bit worth it just to spend time with Adam! Thanks Heidi! As we were on our way down, I got a call from the wedding coordinator..."You were supposed to be here at 3...Guests are going to be here at 5:30...etc. etc.". I calmly told her I spoke with the bride, we agreed on a time and I was on my way. What I really wanted to say to this coordinator was that if she had any idea what we had been through lately and that she was lucky we were even going to be there. The bride was so incredibly sweet and I was going to get her her wedding cake! Before I would have been as flustered as hell. But now, there's not much that gets to me as long as my girls are OK, as long as my G's OK. It's a great place to be. I wish this wasn't how I got here. Adam and I drove up, ceremony still going on, set everything up and got out right as the guests started walking in. It was like Cupcake Wars or something. We then got to have a wonderful dinner, talk, laugh, relax and enjoy each other's company, which was much needed. Sunday was a clean up house day. I got to visit with two of my BFF's (Brit and Steph) and their little ones who came over to the house. The girls had a great time playing with their friends Addison, Samantha, Julia and meet the newest member of the crew, Gavin. G was so upset when everyone left but we had to get ready for the final week of radiation. It's strange to say to your children, "Ok, let's pick out our outfits for the hospital tomorrow". I really wish I was saying, "Ok, let's pick out or school outfits". More thanks... We are so grateful for the meals that are still coming in. I can't explain how something so simple as a meal can lift such a large burden off our shoulders. So, thank you for bringing us food. Thoughts on treatment... As we were sharing our experiences at Camp Okizu, we met another couple who's child is post treatment 7 months from rhabdo. The dad brought up the radiation and showed us a picture of his little boys abdomen where he was treated. Redness, burns, blisters that formed were enough to postpone their treatments so his skin could heal then back at it again. One thing that will scar my mind forever is the fact that treatment to the parents of a child with cancer is almost like child abuse. I know it sounds so harsh but it is so real. These treatments are made to practically kill your child before you can heal them from the cancer. Being a nurse, most of the time we have to hurt to heal whether it be starting an IV, shoving an NG tube down someone's nose or placing a foley. It sucks but you do it because you are trying to heal the patient. It is just so incredibly hard to comprehend doing this to a child. We are willingly giving her poisons in the form of chemotherapy, burns to her skin and organs in the form of radiation, drug after drug to "help" cure her, cutting her to find out where the cancer is, where it has gone, and if it's clearing, and scaring her little body. Then, the treatment continues as they are exposed to more radiation via CT's after the fact. And to think that sometimes these treatments don't actually work for some children. It's absolutely mind blowing and there has GOT to be a better way. We were lucky enough to have Dr. Donaldson who advocated for the higher standard of radiation therapy for G. This type of radiation focuses a higher dose on the tumor site and less on the normal tissues where the standard radiation will send the same amount of radiation to the whole area. G has had redness and has a horrible time going to the bathroom. She screams and cries every time she goes because it "stings". This alone is enough to make you want to bang your head against the wall. But luckily she hasn't had the burning and blistering that is more common with standard radiation. I'm so very thankful for this. I feel terrible for the other children who won't get this advocacy and have to settle with standard treatment. Here are the links to the Santa Cruz Sentinel article along with other paper's links that have picked up the article. I'm very honored for the SC Sentinel to take such an interest in our story and share it with others. I'm also grateful for the SCC along with Santa Cruz Community Media Lab for helping to bring awareness about pediatric cancer to our county. It brings much hope not only to me and my family but to others that have fought the battle or are currently fighting for the lives of their child. Without hope, we have nothing.