I'm not quite sure the words I want to use as I sit here next to Gabriella for her last chemotherapy. It has been quite a day and I should be heading to bed. But my thoughts are always so constant and sharing them just seems like the best thing to do. It's easy to get drawn in to the world of pediatric cancer and not be able to shut the computer off, click on a link to another child's fighting story or pick up my phone to research a cancer thought before it escapes me. It's almost an obsession. To know how many children are out there fighting for their lives haunts me. And, yes...having a child fighting it...I will never be able to describe what that is like. I just want to see it's ugly face and give it hell...but I can't. Cancer is a beast. It's always there. It's always lingering. And to think that there are so many precious children having to battle this every day...for the rest of their lives is a humbling thought. Knowing that MY child has to battle this lingering beast makes me want to continue to hunt this monster down until it is abolished. This "final treatment" is something I cannot carve in stone even though everything in my heart and mind tell me it's done...we've got it. But...I have to believe and damn it, I do. CANCER...YOU LOSE....
I've had this conversation with Adam and other cancer parents. It's definitely a superstition to think that "we're done...let's celebrate". You don't want the cancer demons to hear you and have them show up at your door step a week later. It's more like "we've finished this difficult chapter in the book". Let's hope with all our might that we don't have to put her through this again. Will we ever be "done"?
But the more I think about the celebration, I realize I am celebrating our victories...big and small. Every breath I take, every breath G takes, every time I see that adorable, sassy smile or get to kiss her little bald head...she's here and SHE IS AMAZING!! How could I not celebrate? It's an important thing to do not only when your child has cancer, but in every aspect of life.
Grandma and grandpa accompanied us during the last treatment and since it was my turn to stay the night, daddy and Bridget hung out a while too. I had the opportunity to visit with my Aunt Carolyn (who drove 8 hours in one day to see me and G!) later on in the evening which was welcoming. She shared stories with me of my Granny, who passed away the same week we were going through diagnosis with G. I never really got to process her passing, couldn't attend her funeral because we were in the trenches of our battle and I miss her dearly. We also got a chance to have my dear friend Michelle visit and take some pictures to capture the reality of what cancer treatments are really like. It's a difficult thing to see and even more difficult to share. I'd like all those "people" who decide that childhood cancer only gets 4% of the National Cancer Institute's Budget (while adult cancers get 96%) to see what it's really like. The reality of it all. Then, maybe they will allocate more funds to finding less toxic ways to treat these precious children.
Thoughts of School.....
We've been visiting school about once a week while G's counts have been good. G runs around showing Bridget the ropes and protecting her from any harm. It's been a very positive thing for all of us this past month especially knowing that we get to start both girls back in preschool very soon. I've realized (as my girls hang on my arms keeping me from getting any work done at home, asking for milk and asking for everything else) that I haven't gotten much of any normal "mommy break" where I can drop the kids off at school, run some errands or even have the luxury of a babysitter the past year. I haven't really expected it or thought about it till now because our lives haven't been "normal" the past year. But we are starting to see a glimpse of what the very soon future will be like. G will be entering kindergarden in the fall and although we've always talked about it...it blows my mind that we actually get to start this process! My baby gets to experience her first year of kindergarden and I'm ecstatic!! It brings me back to the first day being at Packard (March 16th, 2012) and having a moment where I thought to myself, "I could actually loose my baby". I will never forget the overwhelming panic I felt at that moment and the world seemed to stop. Today, I get to think about the bright and positive future she has in store for her. We will still have challenges to face in the future but for now, we will enjoy these moments. And yes, mommy gets more "mommy breaks"! It's going to be a difficult adjustment not having my side kicks with me and I will probably be anxious the times they are at school. It will be a big change and we'll slowly work our way into it, but a welcome change.
For the past 5 days (very shortly after chemo), this little girl has been non-stop! She has been on fire...playing, singing, dancing, running around, and talking. Boy, she has a lot to say! She can't go to sleep on time most nights and she will tell me every reason she can't...for about 30 minutes. She cracks me up! Adam and I have reminded her to rest when she needs it because she's pretty good about reading her body. So, G will go in for about 5 minutes then come back out and say, "I'm rested!" She has been working hard on learning and writing her letters. It's great to see her making good progress.
She's been carrying around a "field journal" which is really a diary to make notes of what she sees. My favorite moment was when we were driving home and she said to me, "Mommy, write this down in my journal. 'Today is my favorite day ever because I don't have to go back to the big hospital anymore'."
I will never forget the sweetness in her big green eyes as she looked up at me and said this. We've been saying many "cheers" the last few days and she says, "Here's to being free of cancer". G, you are so astute and incredible.
As Adam said on the way home, "This could be the best day of our lives". It definitely was and it will be the farther away we get from cancer. We will look back at that day and realize it WAS the best day of our lives!
I can see it in little Bridgy's demeanor that she's pretty excited about G's treatments being over too. She was so excited when we drove in (she was with Grandma and Grandpa) and ran up to us to give G a big hug. Bridget has been such a source of laughter, innocence, and compassion for us. She has so many times, made situations more tolerable which helped us all get through them. As I probably said before, I've seen her grow up this past year more than any 2 year old should have to. But, she's giving us a run for the money at this point with the tantrums better known as terrible 2's turning 3. In the moment, I get frustrated but I am so glad she is experiencing the norms of growing up. She's an amazing child but there are some moments when she doesn't get her way...you know it's going to get loud. The last few days, she's been trying to keep up with her sister...and getting worn out. We've also had a busy couple of weeks.
I'm wondering if it's a second child thing or do most little kids give up their toys and things so easily to their older siblings?
Our "end of treatment" meeting...
Valentines Day... I don't know if I've ever experienced a more memorable one. We've been working hard in the kitchen baking up some treats for the girls' classmates. After dropping them off at school, we made our way to our scheduled appointment with Dr. Aftandillian and Dr. Marina to discuss what to expect the next year, two years, five years and beyond. Scary to think of the side effects that can come from the treatment she's had; secondary cancers including leukemia, lymphoma, osteosarcoma, etc. All of the possible side effects is a list too long to write and honestly, I don't want to think about it. I believe this is the main reason why any cancer parent's journey is never really over. Scans for the first year will be every 3 months, every 4 months for the second and third year and every 6 months for the fourth year. No bone marrow biopsies because she was negative in the beginning...yay! The scans will include an MRI and alternating every other time with a chest x-ray and CT. Oy vey, this is a lot of exposure to radiation. What Dr. Marina did say that gave me much comfort is that, "If a relapse were to occur, parents are the ones that normally find it, not so much the scans." We have to question why then will we be doing so many scans and exposing her to that much more radiation...thoughts to further explore.
In the immediate future, our next month is looking good with a few more "nightly, sneak attack which we both hate but save G from so much anxiety during the day" shots, a couple more weekly blood draws, then we go to every 3 months. The antibiotics given every weekend will go for another 6 months and immunizations (whatever we missed) can start up after 6 months.
School can happen next week...YAY!
After our meeting, we got to watch the girls wear themselves out running around the Stanford Shopping Center then have a valentines dinner at CPK. We even got to see our special friend "Squishy"...what luck is that?!
Whew....that's a lot of information. I'm sure I lost most of you. It's a lot for me to process.
Our Future Foundation....In the works
The last few weeks I've been working hard on getting a foundation started. Actually for the past year, I've been pondering, scheming, and trying to figure out all the details of what we want to accomplish. It's become more clear and my vision is coming to fruition. There is so much work that needs to be done and I often get exhausted just thinking how much "I" need to do. Night after night, I look through websites, other organizations information, and Facebook since this has become an outlet or information source for all things childhood cancer. Then I realize, I'm not alone nor do I have to be. These things take a group effort to be successful. I just get overwhelmed because there are so many organizations out there doing so much....and ALL of them are needed and necessary. I realize that there are so...I mean SO many needs that a cancer family needs. My hope is that "Team G Foundation" can fill some of these needs. Along with direct family support, we would like to make an impact on childhood cancer research and of course awareness. It's a big job but it is something that I am so passionate about. And from passion stems success.
For the last year, we've gone from a typical family to an all out battle for our child's life. We've learned most everything that no parent ever wants to learn (unless you're in this area of the medical field). We've gone through a fight that has made us stronger as a couple, stronger as a family and just wanting to give more in life than we ever thought we could. We are continuing the fight but closing the book on this extremely difficult chapter....and we couldn't be happier!!!
Stay tuned for the "Team G Victory Party".....hopefully happening this summer!