Blossoming in early spring
Charlotte giggled and said "I call my apartment my home away from home." That's how this place is feeling to her. And every day we have an appointment, she asks "Same hospital? Where I get sleepy medicine?" I say yes and she smiles in approval and says "Ok, I like that hospital." Her spirit, attitude, and experiences during this entire year have molded how the rest of us cope. And this long stay far from home is no exception. She continues to lead us all.
Today marks the last week of her Proton beam radiation treatments! She continues to feel good and is tolerating everything just remarkably. This morning, during our morning cuddle ritual, she looked at me and said "mommy your my hero. Actually, all my family is. And the nurses and doctors are..." and she proceeded to try to name them all. When we checked in for her appointment this morning, she sashayed her way in and saw her favorite Doctor who we see 3x a week as he primarily does her anesthesia. She said "Dr. Joe! You my hero" and hugged him. I could have peeled him off he melted so. As much as I want to bottle her up and keep her at this age and stage, I equally want a glass ball that shows her grown and well. I want to freeze time as much as I want to speed it up. But neither of that matters because time marches on just like it should and we continue to ride along shotgun with Charlotte as she leads us through all of this. And time, which was moving so slowly, has suddenly sped up as we approach the end of radiation. Duke has already planned for her scans next week and also the start of round 1 of immunotherapy beginning last week of this month. We feel like we need a little break as much as we want immunotherapy to quickly begin. We want a break so she can have some time to just be and we all can have a little normalcy home as a family but we don't want to delay starting this next phase. Brian and I are anxious to begin systemic treatment as it's been since November that's she's had chemo. Radiation only spot treats. If metastatic disease remains, especially microscopic, we don't want to give it a chance to grow. We can't leave it unchecked. Immunotherapy is the game changer in Neuroblastoma helping to greatly improve outcome for patients. Like our Dr said at the beginning to help paint a picture of what she was about to go through, we need to throw the kitchen sink at this disease. We are throwing everything's we've got at this monster.
As we complete this phase of treatment and begin to start the next within the next couple weeks, I can say we have made the most of our time here in Philly. We have had lots of visitors too. Many people have reached out hoping to see us and meet Charlotte and although we didn't get the chance to see everyone, we really did get some time with some very special friends. Charlotte misses playing with and around other children. So having a few kids come visit this past weekend was wonderful for her spirit. My college friend Shelley and her kids visited Saturday as we tackled an annual Dinosaur themed day at the science museum. Then, my friend Kelly came through Saturday into Sunday and spoiled Charlotte with her attention and affection. Today, another college friend Kristen came through with her little girls as they live in NJ. In addition, our college buddy Chris drove up from Maryland to bring Brian and I cheesesteaks and visit for a couple hours when we were both here together a couple weeks ago. Also, Brian's high school buddies who don't live too far from here, Halin and Steve "Pete", came to have dinner and then another time Steve brought his kids for some Museum fun while Brian was here alone with Charlotte. My mom also came one day and night last week. And of course...Pops and Mimi are 40 minutes away so we have been able to see them periodically. But our first visitor whom visited us a few days after we arrived was who I believe to be one of the first Godwinks during our journey...did I ever write about the company I was starting right when Charlotte was diagnosed? It was called Groove n' Grow Music and featured Music Together songs as I had just recently become a certified and licensed Music Together teacher. The organization provided me with a mentor as I began my practice and that's how I came to know Patricia, our first Godsequence (as we like to call them now) on this journey.
After Charlotte was diagnosed, I had to put this new business on hold. I had to cancel my class and refund all registrants funds as well as cancel my rent at this perfect studio where I was to hold this family music making class. Patricia helped me in many ways sort through putting all of this on hold, but mostly she served as an inspiring beacon of hope for when I shared our news about Charlotte, she shared her story in return. She is a mother of a pediatric cancer survivor. Her daughter was diagnosed with a form of leukemia at 9. She is now 15 and doing very well. God placed this woman in our path at this time in our lives! The first Sunday we were here, we got to meet each other as she came over to the apartment for an hour or so. It was very special for us all. Her words of inspiration have stood out to me many many times. And to be able to hear from a mother whose had walked a familiar path and her daughter made it through was fuel to our fire early on after diagnosis. Thank you so much Patricia.
Brian and I continue to be grateful and amazed by the outward expression of love you have all given our family. We are approaching the 1 year anniversary of Charlotte's diagnosis. This has been the hardest, most painful, most fearful, most excruciating, most stressful, and most challenging year in our entire lives...but we can say in the same breath, it has been the most uplifting, faith renewing, beautiful, encouraging, rewarding, and life changing year in our entire lives as well. Charlotte's response to treatment along with her diseases response to treatment has played a huge role in helping us stay positive, but also each of you have played a critical role in helping to carry us through. In ways that were both big and small, the generosity in spirit along with the kindness we have felt has played such an unimaginable role in our coping. But of course, above all, we have felt God's precense in every step, at every turn. He has carried us at times, lifted our face towards hope and light, often shining the light so we could see where to go. And until this year, I never realized how little I knew. Through our baby girl's journey, I have a new understanding and relationship with God and with the world around me. I know I have so much more to learn, and I pray that I can do my best to be worthy of every lesson's moment. If I am, maybe that is a way to thank and honor Charlotte. For her life means more then teaching me any lessons of wisdom or bringing me closer to God. I do not believe this was her calling in the least, but perhaps my experiences helping to shape me into a better human, a better mother, a better wife, a better friend is like a "side effect" of cancer. Like an accumulation of scars that leave their mark, they have transformed me. Meanwhile, Charlotte's yet to reveal what "side effects" she will bear from this journey. From what Brian and I can see, she's like a seed being replanted. She's blossoming amidst it all. As spring time approaches, she's blooming with the earth. I mean look at her...even her hair is growing❤️🌈
Shelley and Seth. Baltimore village crew!
Today marks the last week of her Proton beam radiation treatments! She continues to feel good and is tolerating everything just remarkably. This morning, during our morning cuddle ritual, she looked at me and said "mommy your my hero. Actually, all my family is. And the nurses and doctors are..." and she proceeded to try to name them all. When we checked in for her appointment this morning, she sashayed her way in and saw her favorite Doctor who we see 3x a week as he primarily does her anesthesia. She said "Dr. Joe! You my hero" and hugged him. I could have peeled him off he melted so. As much as I want to bottle her up and keep her at this age and stage, I equally want a glass ball that shows her grown and well. I want to freeze time as much as I want to speed it up. But neither of that matters because time marches on just like it should and we continue to ride along shotgun with Charlotte as she leads us through all of this. And time, which was moving so slowly, has suddenly sped up as we approach the end of radiation. Duke has already planned for her scans next week and also the start of round 1 of immunotherapy beginning last week of this month. We feel like we need a little break as much as we want immunotherapy to quickly begin. We want a break so she can have some time to just be and we all can have a little normalcy home as a family but we don't want to delay starting this next phase. Brian and I are anxious to begin systemic treatment as it's been since November that's she's had chemo. Radiation only spot treats. If metastatic disease remains, especially microscopic, we don't want to give it a chance to grow. We can't leave it unchecked. Immunotherapy is the game changer in Neuroblastoma helping to greatly improve outcome for patients. Like our Dr said at the beginning to help paint a picture of what she was about to go through, we need to throw the kitchen sink at this disease. We are throwing everything's we've got at this monster.
As we complete this phase of treatment and begin to start the next within the next couple weeks, I can say we have made the most of our time here in Philly. We have had lots of visitors too. Many people have reached out hoping to see us and meet Charlotte and although we didn't get the chance to see everyone, we really did get some time with some very special friends. Charlotte misses playing with and around other children. So having a few kids come visit this past weekend was wonderful for her spirit. My college friend Shelley and her kids visited Saturday as we tackled an annual Dinosaur themed day at the science museum. Then, my friend Kelly came through Saturday into Sunday and spoiled Charlotte with her attention and affection. Today, another college friend Kristen came through with her little girls as they live in NJ. In addition, our college buddy Chris drove up from Maryland to bring Brian and I cheesesteaks and visit for a couple hours when we were both here together a couple weeks ago. Also, Brian's high school buddies who don't live too far from here, Halin and Steve "Pete", came to have dinner and then another time Steve brought his kids for some Museum fun while Brian was here alone with Charlotte. My mom also came one day and night last week. And of course...Pops and Mimi are 40 minutes away so we have been able to see them periodically. But our first visitor whom visited us a few days after we arrived was who I believe to be one of the first Godwinks during our journey...did I ever write about the company I was starting right when Charlotte was diagnosed? It was called Groove n' Grow Music and featured Music Together songs as I had just recently become a certified and licensed Music Together teacher. The organization provided me with a mentor as I began my practice and that's how I came to know Patricia, our first Godsequence (as we like to call them now) on this journey.
After Charlotte was diagnosed, I had to put this new business on hold. I had to cancel my class and refund all registrants funds as well as cancel my rent at this perfect studio where I was to hold this family music making class. Patricia helped me in many ways sort through putting all of this on hold, but mostly she served as an inspiring beacon of hope for when I shared our news about Charlotte, she shared her story in return. She is a mother of a pediatric cancer survivor. Her daughter was diagnosed with a form of leukemia at 9. She is now 15 and doing very well. God placed this woman in our path at this time in our lives! The first Sunday we were here, we got to meet each other as she came over to the apartment for an hour or so. It was very special for us all. Her words of inspiration have stood out to me many many times. And to be able to hear from a mother whose had walked a familiar path and her daughter made it through was fuel to our fire early on after diagnosis. Thank you so much Patricia.
Brian and I continue to be grateful and amazed by the outward expression of love you have all given our family. We are approaching the 1 year anniversary of Charlotte's diagnosis. This has been the hardest, most painful, most fearful, most excruciating, most stressful, and most challenging year in our entire lives...but we can say in the same breath, it has been the most uplifting, faith renewing, beautiful, encouraging, rewarding, and life changing year in our entire lives as well. Charlotte's response to treatment along with her diseases response to treatment has played a huge role in helping us stay positive, but also each of you have played a critical role in helping to carry us through. In ways that were both big and small, the generosity in spirit along with the kindness we have felt has played such an unimaginable role in our coping. But of course, above all, we have felt God's precense in every step, at every turn. He has carried us at times, lifted our face towards hope and light, often shining the light so we could see where to go. And until this year, I never realized how little I knew. Through our baby girl's journey, I have a new understanding and relationship with God and with the world around me. I know I have so much more to learn, and I pray that I can do my best to be worthy of every lesson's moment. If I am, maybe that is a way to thank and honor Charlotte. For her life means more then teaching me any lessons of wisdom or bringing me closer to God. I do not believe this was her calling in the least, but perhaps my experiences helping to shape me into a better human, a better mother, a better wife, a better friend is like a "side effect" of cancer. Like an accumulation of scars that leave their mark, they have transformed me. Meanwhile, Charlotte's yet to reveal what "side effects" she will bear from this journey. From what Brian and I can see, she's like a seed being replanted. She's blossoming amidst it all. As spring time approaches, she's blooming with the earth. I mean look at her...even her hair is growing❤️🌈
Charlotte's favorite: Dr. Joe has been so important to her response to treatment and getting over her fear of daily anesthesia
On a walk she played the row home steps were castle steps
The city is her playground
That smile
Snuggles with Grandma
She loves to help cook...especially cracking eggs and stirring 🙈
Helping to carry groceries. We love city grocery shopping!
She made this craft at an appointment and seems to have embraced being a mini super hero in her own right
Valley Forge! Exploring the soldier encampments
Time for rest on our way to the mall! First time I've been shopping in a mall in over a year!
How can a girl decide? I know Charlotte....
Mommy, you dress up too?
Meeting a new friend
With friends at Paleopalooza
Nate and Charlotte
Shelley and Seth. Baltimore village crew!
Digging for bones
Cutest paleontologists
Kelly insisted mommy sleeps in while they took a walk to Dunkin Donuts for coffee and breakfast...they may have locked themselves out and didn't want to wake me so I found them having an impromptu hall picnic! I have amazing friends
Enjoying a few sweet gifts from Mimi's sweet and thoughtful family
Finished radiation today, her last week!
Lunch today with Kristen, Celia, and Ellie: Northern NJ village crew!
While sweeping the floor, we noticed a rainbow coming through the glass window shining next to her new rainbow flip flops. Bring on spring! And thank you God❤️🌈
Amazing journey, amazing village unbelievable warrior!!
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