Chemo is done. We have reached a major milestone. Now we move on. Scans are next month. The continued battles with Lucille Packard Chldren's Hospital rage on. G's scans were scheduled, screwed up, and rescheduled. After the second reschedule, I'd had enough. I called and called and moved up the chain. I threatened and lied and threatened some more. I told them I was going to file complaints with everyone from JAHCO to the Vatican (that was the lie) before I got someone to listen. And when they did listen, things worked out, but in the meantime I made a call to UCSF. It was an amazing phone call. I was not sure what I wanted to hear but it worked out. I called and the physician that I spoke with was very excited to speak to me. She was enthusiastic and energetic. She asked the right questions and had many answers. She was so enthusiastic that I figured she must be a brand new doctor. Then I looked her up, 1974. She became a doctor when I was 3 years old and is still fired up. I have got to meet this person. I called for a couple of reasons, one, because I'm tired of dealing with Packard's overcrowded overextended, overbooked, staff and facilities. And two because I was not happy with what our oncologist told us about G's scan protocol for the next three years. She will be exposed to a great deal of radiation from future CT and PET scans if we go with the plan as it was laid out to us Thursday. The doctor I spoke to at UCSF just happened to have published a research paper on the effects of radiation exposure from diagnostic imagine studies. I was blown away that I probably was talking to one of the most qualified people in the country to answer our questions. She was easy to talk to and excited to meet Gabriella. We made an appointment for Thursday afternoon and will be heading for San Francisco tomorrow. Meanwhile, Packard finally got their shit together and managed to get G's scans all on the same day, at the same time. It is amazing how difficult it was to get that done but I truly believe it is the best way to do it and will be easiest on G.
It was funny how good it felt to have other options for G's treatment. Even if we don't decide to go to UCSF for the rest of G's scans, knowing that their are other options, and other doctors who will help us and give us opinions is such a relief. I just wish that I had reached out to these guys a year ago. Oh well, you live and you learn.
Team G
Adam
Wednesday, February 20, 2013
Saturday, February 16, 2013
Big Sur International Marathon
Dear Friends,
I've been training for the Big Sur Marathon (one I've wanted to participate in for years now) for over a month now and below is the total miles I've run since January 14th. I've only run one marathon in my life and this was right before I became pregnant with Gabriella. I knew I needed something to transition me from our active cancer lives to the next chapter. Running has always been a means of therapy for me. This time, it's so much more meaningful.
Every training run has been dedicated to a child that has inspired me on the way and I'll continue to dedicate these runs. Whether one I've met or one I've read about, they have all given me the strength to get through this training. Each mile I run has meaning and strength behind it as I think about what these kids fighting cancer endure every day.
As I calculated the journey that we have been through with G and what she has been through, I realized that the number 26 (the miles in a marathon) has significance in our lives.
26 + 2 days of radiation for her treatment.
26 x 2 (52) weeks of physical treatment she's had to endure.
26 x 4 (104) on average is her bi-weekly blood draws she's had.
And the one that affected me the most:
26 is the number of new medication that has entered my child's body since her fight began. Can you believe this?
Every mile I run is a mile I put behind me...a week of treatment... a blood draw...a different medication.
There are a few number of charities that participate in the Big Sur International. I chose this one because it is a local foundation and they help children and adults fighting cancer...helping them fight with hope and dignity.
Lazarex Cancer Foundation builds a bridge to hope, life and dignity for cancer patients by providing financial assistance to defray the cost associated with patient participation in FDA clinical trials. Additionally, they help patients navigate their clinical trial options and provide community education and outreach services.
The money you donate will help Lazarex achieve their mission of providing resources for cancer patients, children and adults who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. Lazarex believes that together we can build a bridge to hope for cancer patients!
With Hope, Gratitude, and Preserverance,
Follow This Link to visit my personal web page and help me in my efforts to support Lazarex Cancer Foundation.
The money you donate will help Lazarex achieve their mission of providing resources for cancer patients, children and adults who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. Lazarex believes that together we can build a bridge to hope for cancer patients!
With Hope, Gratitude, and Preserverance,
Follow This Link to visit my personal web page and help me in my efforts to support Lazarex Cancer Foundation.
Thank you for your constant support,
Team G
Kristin
Friday, February 15, 2013
FINAL CHEMO RECOVERY...and the days ahead.
Written on Thursday evening...(a week ago)
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.
My Gabriella...
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!
My Bridgy...
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.
Final Thoughts....Whew!...
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!
Kristin
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.
My Gabriella...
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!
My Bridgy...
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.
Final Thoughts....Whew!...
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!
Kristin
Thursday, February 7, 2013
Lucky number 14
I watched the last of the chemo drugs drip into the IV attached to my Warrior Princess Fairy (her words) tonight and felt a twinge of relief. Now it's all about recovery, about healing, about taking our lives back from this terrible disease that has taken so much of our time and focus. This last year has been a challenge, a struggle, a test. Well, we passed that test and now it is time to move on. It is very difficult to feel overjoyed right now because we know there is a chance that our fight is not really over. We know cancer is a fickle beast that can hide and re-emerge later. We know because we have seen it. We have been very careful to tell G that this is the end, we want nothing more than to take her in our arms and tell her this shit is over. But what if? We don't want to lie to her, give her false hope. How do we deal with it? I keep telling her that if the cancer is gone then it is over. She gives me the same look every time. One of complacency, almost existential. Like she is saying "so what". Her look gives me strength. I am convinced we beat this demon, but if there are complications, we will beat them too.
Team G
Adam
Team G
Adam
Saturday, February 2, 2013
"The Beauty of Your Cancer"
My dear Gabriella and Bridget,
As we come closer to the end of this difficult chapter in our lives, there is so much that I reflect on. I see the two of you only a year older than you were when this all started and realize you have grown in impressive ways. I am in awe of you both. I see the little warriors in you and how you've each come into your own people yet share a bond with each other that is unbreakable. It is a bond that two people will only know if they go through an ordeal as astounding as this. Gabriella, your beauty and strength have shined above all else and Bridget, your compassion and understanding is one that I will ponder for years to come.
Our last treatment will be coming up this coming week. I am so ecstatic that we won't have to poison you, G with these toxins any further to help save your life. And I am ecstatic that you, Bridget won't have to endure nights away from your sister because she is in the hospital or watch her as she struggles through the discomfort and nausea. Yet, I am so scared. Scared because we won't be "actively" killing those god damned cancer cells in your little body with this oddly protective poison we need to give you. It is such a strange feeling really. But I know in my heart that your cancer is gone. And I know it won't come back. We got it baby. I just know we did.
This past week we needed an escape from the house that has trapped us for too many days. We needn't wait anxiously for your last chemo at home when we felt good enough to escape for a little bit. So, off on a little trip to Lincoln (or England which I love calling it) to see Nana and Papa. Daddy and I even got to take another little trip up to the mountains. They are so beautiful and I can't wait to bring you girls up there.
Driving by the frozen lakes always made me ponder about what's underneath. But this time, the marveling was much more intense and made me anxious. Ending our active treatment is going to be like stepping on that frozen lake. Will we slip on the ice? Will we fall through to the frozen lake below? Or will it be strong enough to hold us? We just have to hold our breath, take each others hands and step together. Proceed with caution, celebrate the victory and continue to hope.
This Monday fell on Gabriella's lab day and she confidently let mommy access her port while sitting on Nana's lap. Adam was right there to assist me, Nana was there to comfort G, Bridgy was watching Scooby Doo and Papa was asking where to put the dishes (his way of being nervous). Sticking a needle into your child's chest (or any other part of her) is something I don't think I'll ever get used to. But we had to get it done and we did. I felt a slight surge of nausea after the process being that I was slightly off the first stick and had to adjust a little while G screamed that it hurt. In her eyes, I stayed strong and I was not going to falter. We talked about it a little after and she said it hurt just a little but she was also a bit nervous (because our nurse Ellen is normally the one accessing G's port). As always, she moved on from the moment much quicker than I did.
This poem I found a while back when I was just searching and hoping...for hope. It struck a cord with me at the time because I thought, how in the world can you put beauty and cancer in the same paragraph, yet alone the same sentence? But it makes me realize there's so much more to this journey.
THE BEAUTY OF YOUR CANCER
THE BEAUTY OF YOUR CANCER IS
YOUR SPIRIT SHINING THROUGH IT,
YOUR SMILE AND YOUR LAUGHTER TELL ME
YOU WILL MAKE IT THROUGH THIS,
PRAYERS AROUND THE WORLD
ALL INCLUDE YOUR NAME,
THE BEAUTY OF YOUR CANCER IS
OUR LIFE WILL NEVER BE THE SAME,
YOU HAVE TOUCHED THE HEARTS OF STRANGERS,
AND NOW THEIRS ARE TOUCHING YOURS,
YOU HAVE TOUCHED THE HEARTS OF FAMILIES
WHO HAVE SEEN MIRACLES AND HOPE FOR CURES,
YOU HAVE TOUCHED THE NURSES AND DOCTORS
WHO HAVE WATCHED YOU OVERCOME YOUR OBSTACLES,
THE BEAUTY OF YOUR CANCER IS ANYTHING IS POSSIBLE...
...I TOOK A GOOD LOOK BACK,
AND DECIDED TO CHANGE OUR LIVES,
I REALIZED WHAT WAS MISSING, WHAT WAS IMPORTANT,
AND WHAT WE NEEDED TO SURVIVE
THE BEAUTY OF YOUR CANCER IS~
IT TOOK THE CANCER FOR ME TO SEE IT,
OUR FAMILY BOND IS CLOSER NOW,
THE LOVE WE SHARE IS TRUE,
WE TREASURE EVERY MINUTE,
AND ITS ALL BECAUSE OF YOU,
YOU INSPIRE OTHER FAMILIES WHO ARE GOING THROUGH THE SAME,
YOUR SMILE AND YOUR SPIRIT SEEM TO EASE THEIR PAIN,
YOU HAVE CHANGED SO MANY PEOPLE,
AND RAISED HOPE IN MANY TOO,
THE BEAUTY OF YOUR CANCER... IS YOU.
Written by:TINA (SETHS MOM)10-07
With HOPE and STRENGTH...
Kristin
As we come closer to the end of this difficult chapter in our lives, there is so much that I reflect on. I see the two of you only a year older than you were when this all started and realize you have grown in impressive ways. I am in awe of you both. I see the little warriors in you and how you've each come into your own people yet share a bond with each other that is unbreakable. It is a bond that two people will only know if they go through an ordeal as astounding as this. Gabriella, your beauty and strength have shined above all else and Bridget, your compassion and understanding is one that I will ponder for years to come.
Our last treatment will be coming up this coming week. I am so ecstatic that we won't have to poison you, G with these toxins any further to help save your life. And I am ecstatic that you, Bridget won't have to endure nights away from your sister because she is in the hospital or watch her as she struggles through the discomfort and nausea. Yet, I am so scared. Scared because we won't be "actively" killing those god damned cancer cells in your little body with this oddly protective poison we need to give you. It is such a strange feeling really. But I know in my heart that your cancer is gone. And I know it won't come back. We got it baby. I just know we did.
This past week we needed an escape from the house that has trapped us for too many days. We needn't wait anxiously for your last chemo at home when we felt good enough to escape for a little bit. So, off on a little trip to Lincoln (or England which I love calling it) to see Nana and Papa. Daddy and I even got to take another little trip up to the mountains. They are so beautiful and I can't wait to bring you girls up there.
Driving by the frozen lakes always made me ponder about what's underneath. But this time, the marveling was much more intense and made me anxious. Ending our active treatment is going to be like stepping on that frozen lake. Will we slip on the ice? Will we fall through to the frozen lake below? Or will it be strong enough to hold us? We just have to hold our breath, take each others hands and step together. Proceed with caution, celebrate the victory and continue to hope.
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| This moment stole my heart today when Bridget leaned over to give G a hug because her tummy was upset. It really took my breath away. |
This Monday fell on Gabriella's lab day and she confidently let mommy access her port while sitting on Nana's lap. Adam was right there to assist me, Nana was there to comfort G, Bridgy was watching Scooby Doo and Papa was asking where to put the dishes (his way of being nervous). Sticking a needle into your child's chest (or any other part of her) is something I don't think I'll ever get used to. But we had to get it done and we did. I felt a slight surge of nausea after the process being that I was slightly off the first stick and had to adjust a little while G screamed that it hurt. In her eyes, I stayed strong and I was not going to falter. We talked about it a little after and she said it hurt just a little but she was also a bit nervous (because our nurse Ellen is normally the one accessing G's port). As always, she moved on from the moment much quicker than I did.
This poem I found a while back when I was just searching and hoping...for hope. It struck a cord with me at the time because I thought, how in the world can you put beauty and cancer in the same paragraph, yet alone the same sentence? But it makes me realize there's so much more to this journey.
THE BEAUTY OF YOUR CANCER
THE BEAUTY OF YOUR CANCER IS
YOUR SPIRIT SHINING THROUGH IT,
YOUR SMILE AND YOUR LAUGHTER TELL ME
YOU WILL MAKE IT THROUGH THIS,
PRAYERS AROUND THE WORLD
ALL INCLUDE YOUR NAME,
THE BEAUTY OF YOUR CANCER IS
OUR LIFE WILL NEVER BE THE SAME,
YOU HAVE TOUCHED THE HEARTS OF STRANGERS,
AND NOW THEIRS ARE TOUCHING YOURS,
YOU HAVE TOUCHED THE HEARTS OF FAMILIES
WHO HAVE SEEN MIRACLES AND HOPE FOR CURES,
YOU HAVE TOUCHED THE NURSES AND DOCTORS
WHO HAVE WATCHED YOU OVERCOME YOUR OBSTACLES,
THE BEAUTY OF YOUR CANCER IS ANYTHING IS POSSIBLE...
...I TOOK A GOOD LOOK BACK,
AND DECIDED TO CHANGE OUR LIVES,
I REALIZED WHAT WAS MISSING, WHAT WAS IMPORTANT,
AND WHAT WE NEEDED TO SURVIVE
THE BEAUTY OF YOUR CANCER IS~
IT TOOK THE CANCER FOR ME TO SEE IT,
OUR FAMILY BOND IS CLOSER NOW,
THE LOVE WE SHARE IS TRUE,
WE TREASURE EVERY MINUTE,
AND ITS ALL BECAUSE OF YOU,
YOU INSPIRE OTHER FAMILIES WHO ARE GOING THROUGH THE SAME,
YOUR SMILE AND YOUR SPIRIT SEEM TO EASE THEIR PAIN,
YOU HAVE CHANGED SO MANY PEOPLE,
AND RAISED HOPE IN MANY TOO,
THE BEAUTY OF YOUR CANCER... IS YOU.
Written by:TINA (SETHS MOM)10-07
With HOPE and STRENGTH...
Kristin
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