Round 3 Immunotherapy
Charlotte is back in the hospital this afternoon to begin Round 3 of Immunotherapy. As always, Brian and I have many mixed feelings each time we begin more treatment. We are happy to keep going and love checking off another box as DONE ✅. But, there is always that familiar pit in our stomachs that we can never escape. It's hard to begin again once you watch her acting like herself, and in recent days, feeling better then we have seen her in well over a year since before diagnosis. She's been so happy and playful and energetic. These are all good things. And who knows...maybe this round won't hit her too hard. They have told us every round is different for everyone so there is just no telling how she will respond until we are in the thick of it. With that said, we are so happy to be in this position to keep going and hitting this disease with all of our might. It's been a wonderful past couple weeks home but vacation is over. It's time to get back to work.
This afternoon, Charlotte happily entered into the PBMT unit otherwise known as 5200. She asked how long we would be here and seems to understand that the medicine she needs to get here from "R2D2" (her IV Pole) is so that her cancer doesn't grow back. On route in the car today, on her own accord, she drew (scribbled) some "notes" for her favorite doctors, Dr. Driscoll and Dr. Cal, as well as a couple of her nurses. She also brought some money and when we asked what it was for she said "to help pay for my medicine". My heart be still. She walked around trying to hand someone a dollar and and what appeared to be an Irish 10 cent piece I believe our Aunt Debbie and Uncle Chuck gave her from their trip😂! Of course, the staff here just ate her up. So, we are all moved in and squared away to begin her 3rd round of immunotherapy tomorrow morning. If all goes as expected, she should come home Friday!
Unfortunately, I learned some tough news from another family we keep in touch with as their 3 year old son, Jacob who I have written about before, is back to continue treatment for stubborn disease. Jacobs mom, Kim, was the first person I met also here at Duke going through the same protocol. Jacob also has stage 4 Neuroblastoma and we met while he was getting Immunotherapy and Charlotte was here for Transplant. We talk and text from time to time. Jacob was trying to begin the Vaccine trial at Sloan Kettering in NY after he finished this protocol here at Duke. However, his mother just told me tonight that his recent scans showed some progression of disease and that he never reached remission like they originally believed. Sloan is taking over and the Duke Drs are following Sloan's protocol by administering several rounds of chemo before they will go back up to NY for more radiation and a specialized Antibody treatment only Sloan Kettering does. His family is on an unimaginable roller coaster and my heart is breaking for them. This disease is so nasty. Jacob is another example of a child with stubborn disease that can lie hidden. For us parents walking this road with our children, after scans are clear, the false sense of security is maddening. As much as we yearn to be done with treatment and to see Charlotte in complete remission....that notion is equally terrifying. How do we stop fighting? We yearn to move on but it's hard to do that when there are viable options on the table such as this vaccine and other treatments with low toxicity that we are planning to explore. There are potential Treatments currently being developed to help children like Charlotte remain in remission. And my feet feel stuck in concrete as we tackle what's in front of us when, in fact, now is the time to act to begin the process of figuring out if Charlotte could qualify for and benefit from any of these trials. And if she does, then should we pursue? These decisions will rest on me and Brian's shoulders. This weighs heavily on us because the time is drawing near where we will have to decide what is best for Charlotte once she completes immmunotherapy and, God willing, has achieved complete remission. The three letters we keep praying to hear, NED, No Evidence of Disease, are a victory. We thought that meant we won the war. But we are learning that this beast of a disease has many faces. And that successful completion of this protocol may mean Charlotte is in remission but she is not considered cured. There is a window of 5 years where her disease could return. If there is promising research that demonstrates a way to extend the time she is in remission, then it is up to us to learn about it and decided whether to pursue. As much as there are times I want to pull the covers back over our head like a child who doesn't want to face the day, our baby girl is depending on us to make decisions that affect the rest of her life. Please God, you've guided us every step of the way so far. Please keep talking to us. Please keep showing us the way. Please help us hear you. Please help us do what is best so we can help save Charlotte.
Thank you village for adding Jacob and his family to your prayers. I know Charlotte's on her own unique journey. I have to chant this to myself sometimes. Jacob is not Charlotte. Our oncologist. Dr. Sun, told us at the beginning: "there are only 2 numbers that matter: 0% and 100% and we are going for 100." We cling to this notion every single day. God, please help us help our girl be the 100%.
This afternoon, Charlotte happily entered into the PBMT unit otherwise known as 5200. She asked how long we would be here and seems to understand that the medicine she needs to get here from "R2D2" (her IV Pole) is so that her cancer doesn't grow back. On route in the car today, on her own accord, she drew (scribbled) some "notes" for her favorite doctors, Dr. Driscoll and Dr. Cal, as well as a couple of her nurses. She also brought some money and when we asked what it was for she said "to help pay for my medicine". My heart be still. She walked around trying to hand someone a dollar and and what appeared to be an Irish 10 cent piece I believe our Aunt Debbie and Uncle Chuck gave her from their trip😂! Of course, the staff here just ate her up. So, we are all moved in and squared away to begin her 3rd round of immunotherapy tomorrow morning. If all goes as expected, she should come home Friday!
Unfortunately, I learned some tough news from another family we keep in touch with as their 3 year old son, Jacob who I have written about before, is back to continue treatment for stubborn disease. Jacobs mom, Kim, was the first person I met also here at Duke going through the same protocol. Jacob also has stage 4 Neuroblastoma and we met while he was getting Immunotherapy and Charlotte was here for Transplant. We talk and text from time to time. Jacob was trying to begin the Vaccine trial at Sloan Kettering in NY after he finished this protocol here at Duke. However, his mother just told me tonight that his recent scans showed some progression of disease and that he never reached remission like they originally believed. Sloan is taking over and the Duke Drs are following Sloan's protocol by administering several rounds of chemo before they will go back up to NY for more radiation and a specialized Antibody treatment only Sloan Kettering does. His family is on an unimaginable roller coaster and my heart is breaking for them. This disease is so nasty. Jacob is another example of a child with stubborn disease that can lie hidden. For us parents walking this road with our children, after scans are clear, the false sense of security is maddening. As much as we yearn to be done with treatment and to see Charlotte in complete remission....that notion is equally terrifying. How do we stop fighting? We yearn to move on but it's hard to do that when there are viable options on the table such as this vaccine and other treatments with low toxicity that we are planning to explore. There are potential Treatments currently being developed to help children like Charlotte remain in remission. And my feet feel stuck in concrete as we tackle what's in front of us when, in fact, now is the time to act to begin the process of figuring out if Charlotte could qualify for and benefit from any of these trials. And if she does, then should we pursue? These decisions will rest on me and Brian's shoulders. This weighs heavily on us because the time is drawing near where we will have to decide what is best for Charlotte once she completes immmunotherapy and, God willing, has achieved complete remission. The three letters we keep praying to hear, NED, No Evidence of Disease, are a victory. We thought that meant we won the war. But we are learning that this beast of a disease has many faces. And that successful completion of this protocol may mean Charlotte is in remission but she is not considered cured. There is a window of 5 years where her disease could return. If there is promising research that demonstrates a way to extend the time she is in remission, then it is up to us to learn about it and decided whether to pursue. As much as there are times I want to pull the covers back over our head like a child who doesn't want to face the day, our baby girl is depending on us to make decisions that affect the rest of her life. Please God, you've guided us every step of the way so far. Please keep talking to us. Please keep showing us the way. Please help us hear you. Please help us do what is best so we can help save Charlotte.
Thank you village for adding Jacob and his family to your prayers. I know Charlotte's on her own unique journey. I have to chant this to myself sometimes. Jacob is not Charlotte. Our oncologist. Dr. Sun, told us at the beginning: "there are only 2 numbers that matter: 0% and 100% and we are going for 100." We cling to this notion every single day. God, please help us help our girl be the 100%.
Heading in for round 3!
Settled in to our room on 5200. Time to play
Going to dinner before seeing Paw Patrol Live yesterday at DPAC
Dancing
She loved it
She was mesmerized!
Intermission treat and more dancing
Playing pretend make up at the bus stop with friends
Charlotte and one of her friends Lydia. Charlotte spent over an hour at her house playing and having lunch while I ran some errands the other day! She hasn't felt well enough to want to leave my side in so long but I knew she'd be fine as she happily waves "bye mom!" I have great friends and so does she❤️
Charlotte learned a new trick 😂
Our little ham on our drive in today
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