Charlotte takes on Philadelphia
After we arrived at our hotel in Philadelphia Sunday night, there was a mother in the lobby. She watched us as we checked in, smiling at Charlotte. She softly said "can I ask? what does she have?" The hotel was a mile from The Childrens Hospital of Philadelphia so I knew in that instant she was probably a mother of a sick child too. Brian told her "Neuroblastoma" and she said "my daughter too". Then, a 9 year old daughter hopped into her lap, curling up looking sleepy. She then asked us a question that still haunts me. She asked, "Is this her first time having Neuroblastoma?" In my mind I thought to myself "YES it's her first time! How many damn times does someone need to have this damn disease!" And then my heart sank. I knew it then that her daughter had beaten this beast and was now fighting a relapse. Anger started to flare briefly but not at this tired mom but at this notion. We are here because we believe what we are doing gives Charlotte the best possible chance. But seeing this family and hearing this mother talk about their situation briefly deflated us, popping our hopeful bubble for a moment. But it also solidified our decision, giving us a boost of confidence in our choice. This IS her best chance. And maybe when Charlotte is 9, all that she has gone through and everything we have done will help paint her a world with school and friends, a sport or hobby she loves, family time and playing instead of more hospitals and fighting for her life. So, we add this little girl Kelcey and her mom Kim to our growing prayer list and we lower our heads to do what we need to do to help our Charlotte soldier on.
So, we are beginning the next phase of Charlotte's treatment. We are now home after 2 days of appointments up at CHOP to prepare for Charlotte to start her radiation treatments. Although Duke has radiation, and this was a good option, we have discovered the benefits of Proton radiation and have chosen this option for Charlotte. It means moving up to Philly for about 5 weeks but it also means there is greater potential to spare Charlotte's little developing body of unnecessary radiation that could scatter to her other organs. Proton radiation delivers precise beams of radiation to exactly where you want it while avoiding areas you don't. It is just as effective at killing cancer cells but the belief is it's less toxic long term. Neuroblastoma is very sensitive to radiation. A couple months ago, back during transplant 1, we began to plan for radiation and sent Charlotte's info and latest scans to CHOP for evaluation. We felt blessed that she qualified and insurance approved her.
However, when CHOP called to tell us Charlotte had qualified and been approved, they told us some unexpected news. CHOP listed 2 areas they wanted to radiate. One area was expected: her abdomen where the original tumor was along with any questionable areas that the surgeon noted dead tumor was left behind due to sensitivity of location (up against a kidney and around artery leading to small intestine). But the second sight they want to radiate was an area of Charlotte's left tibia (lower leg bone). We were confused and concerned because Duke had read these latest scans as negative of any active Neuroblastoma. Her original scans had activity in both her tibias, a spot on her femur, her pelvis, and 2 spots on her spine along with her abdominal tumor. So, a couple months ago, Brian and I were terrified that CHOP had detected cancer that had not responded to treatment or worse--had progressed. Our team at Duke reassured us that Charlotte was not only responding to treatment but was in the best possible situation going into transplant with minimal if not zero disease detected. They did not believe CHOP found anything new but that their radiologists see many more cases of Neuroblastoma and so their expertise in this matter is exceptional. I couldn't write about this new finding back during transplant because a) we were so busy and focused on getting Charlotte through transplant and b) we were afraid and knew we had several weeks away until we could meet with the doctors at CHOP and get an answer as to what their oncology-radiology team sees and believes.
However, after meeting with the doctors at CHOP, we feel much better about this new spot they believe needs to be radiated. We reviewed her scans with them again from March to compare with the most recent ones from September. It was hard to look back to those first scans again. Gut wrenching to see all the cancer glowing from the uptake of this MIBG contrast that only Neuroblastoma absorbs. But Brian and I could both see what they are questioning as potentially stubborn cancer in her right Tibia. We agreed that we want to radiate anything questionable. We feel so grateful for this second opinion that has revealed this area of concern. CHOP is a world leading hospital for Neuroblastoma. They are also a leader in NB research. They believe this spot is an example of an area that could cause relapse in many children and that research has shown it improves chances to radiate these potential bony legions. We cannot tell if this cancer was in her marrow and would have potentially been cleared by these last 2 rounds of high dose chemo during transplant or if this cancer is in her bone, which is much more hard to remove so radiation is the best treatment for stubborn bony areas.
At CHOP, Charlotte was under anesthesia while they made a mold of her little body so that she would be positioned very precisely during all of her Proton beam therapy. They also gave her a few teeny tiny tattoos to help with exact placement. They have recommended Charlotte undergo 20 rounds of radiation which will span 4-5 weeks. Radiation will be Monday-Friday in the mornings since she can't eat until after anesthesia. It's hard to imagine her waking up everyday, making our way in to the hospital from wherever we will live out patient, and then her to be put back to sleep under anesthesia for treatment every day. But this is what it will take and we will meet it head on. The doctors reassured us kids like Charlotte tolerate the anesthesia and the radiation aspects of this therapy remarkably well. She may have some nausea and fatigue but nothing compared to what she's already been through. There is also potential for some stunted growth in her leg and part of her spine that the proton beams would radiate. But we will most likely have many afternoons where we can have some fun exploring fun things to do in Philly. We will do our best to turn this time into a strange mini get away. Brian and I are planning where to live as well as a surprise flight for us to bring the kids up for a few days mid treatment. Brian will also come spend a week with her so I can come back home to see the kids for a few days. We can do this. She can do this. She will soldier on with the grace and love of God. We are beyond hopeful and grateful for this opportunity.
To say CHOP and the University of Penn medical facility that houses the Proton beam radiation machine is impressive is an understatement. This place is world class. The staff and doctors were ready for Charlotte after learning all about her over the past 2 months. The oncologist even echoed our own team in her use of words saying Charlotte has had a "remarkable" response to treatment! That gave us a huge smile. They also asked us all about Taylor and Parker and their well being. The facilities were beautiful. The patient/family services was personalized and every detail of a patients experience was carefully thought through. I mean, they even gave us gift cards towards lunch, validated parking, had a bazillion employees to help you from directing you to the parking spot that's open to pushing the elevator button for you to a welcome cart with beverages. At a lunch cafe, there were 2 gentleman playing live music in their guitar and mandolin. We kept being amazed looking around and asking ourselves, where are we?! This will be the strangest "vacation" from our life we have ever been on for sure. And I know this is no vacation. There are risks as there are with everything and we are by no means even completely out of the woods from her transplant as Drs are still closely monitoring many facets of her recovery while keeping an eye on some numbers that we hope to see improvement in over the next few weeks BUT this little girl deserves some fun. We want to have an adventure full of memory making moments and joy and laughter. So that is our plan--radiation in the morning, and having fun the rest of the time following Charlotte's lead as to what she is able to do. AND Bonus points for CHOP being 30 miles or so from Pops and Mimi (Brian's dad Doug and his wife Joanne)!!
For now, Charlotte will have 2 weeks home with just her normal clinic check up appointments before we move her up and begin radiation on February 9th. If we stay close to schedule, we should be finished and back home sometime the week of March 6. Then we will begin to plan for her next and final big phase of treatment: 5 months of immunotherapy. But for now, we are just trying to keep up with our little busy bee who is feeling so good and is full of life and energy. Her big sister and brother love having her home, but are adjusting to having a pesky little sister back home again. Charlotte is also adjusting to the flow of the household where she is not the only child lol. She isn't always use to sharing daddy and mommy's attention or not getting exactly what she wants when she wants it. But oh to be able to actually parent again feel so so good. We are eternally grateful for Nana Schuey and Poppy who continue to be the consistent and loving grandparents that are running our world in the background. They are the primary care givers for Taylor and Parker when we are away, caring for Lucy like she was a 2-legged baby, and taking care of all the details at home. I like to think all of these duties are helping to keep them young and on their toes! They are such a blessing as are all of you who bring a meal, say a prayer, help with groceries, or help provide fun and play to Taylor and Parker.
We continue to be overwhelmed by the generous spirit of each and everyone of you in our amazing village. We have received so many gifts over the year: from gift cards, to special things for the children, to cards and letters and prayer chains, to funds that we have put into Charlotte's account to use as needed. We wanted to let everyone know that we have heard many of you asking "What do you all need? What can we do?" It is overwhelming in a good way. You have already done it. Your prayers combined with our own unrelenting ones have been heard. Charlotte is doing the "remarkable" and she will keep going, keep moving. Many have asked if they can give and if so how. Some people closest to us have asked to help start a Benefit Fund for Charlotte. Brian and I understand this disease. We have learned what it can do. Our hope is that we will never have to fundraise for Charlotte personally, but we do not know if this will be the case in her future either. We do anticipate starting a foundation in the future with the hopes to give back and help other families and children as they battle what Charlotte has hopefully beaten. That's our hope. For now, we are so appreciative of any of your gifts in any form: the giving of your time and prayers, help with our children, food and supplies, or the monetary kind. We do have an account we set up a while ago for Charlotte's short and long term care needs. We are able to deposit funds into her account for use towards any needs or out of pocket costs insurance doesn't cover. Brian continues to work as hard as possible to continue to support our family, but sacrifices have and will be made along with a temporary slowing down in business as we pool all of our efforts to care for Charlotte over this past year and in this new year. Although income has naturally been affected, we are grateful for our savings and for our insurance. For anyone who has been asking how to give directly to Charlotte, Brian's sister Lynn ( lrsaltz74@yahoo.com) and our good friend Deborah ( deborahmjenkins@gmail.com) are happy to help provide information for how to do this. But for now, we do not plan to do any specific fundraising at this time with the hopes that Charlotte can continue being successful on the current protocol with therapies that have been recommended and approved through our insurance. Clinical trials and experimental treatments are not covered by insurance...and we pray to God every day that that will not be the road we turn down as we watch our baby girl defeat this beast. Thank you God for giving her to us and for giving us this blessed life where we can feel your love every step of our way.
Dinner break fun
So, we are beginning the next phase of Charlotte's treatment. We are now home after 2 days of appointments up at CHOP to prepare for Charlotte to start her radiation treatments. Although Duke has radiation, and this was a good option, we have discovered the benefits of Proton radiation and have chosen this option for Charlotte. It means moving up to Philly for about 5 weeks but it also means there is greater potential to spare Charlotte's little developing body of unnecessary radiation that could scatter to her other organs. Proton radiation delivers precise beams of radiation to exactly where you want it while avoiding areas you don't. It is just as effective at killing cancer cells but the belief is it's less toxic long term. Neuroblastoma is very sensitive to radiation. A couple months ago, back during transplant 1, we began to plan for radiation and sent Charlotte's info and latest scans to CHOP for evaluation. We felt blessed that she qualified and insurance approved her.
However, when CHOP called to tell us Charlotte had qualified and been approved, they told us some unexpected news. CHOP listed 2 areas they wanted to radiate. One area was expected: her abdomen where the original tumor was along with any questionable areas that the surgeon noted dead tumor was left behind due to sensitivity of location (up against a kidney and around artery leading to small intestine). But the second sight they want to radiate was an area of Charlotte's left tibia (lower leg bone). We were confused and concerned because Duke had read these latest scans as negative of any active Neuroblastoma. Her original scans had activity in both her tibias, a spot on her femur, her pelvis, and 2 spots on her spine along with her abdominal tumor. So, a couple months ago, Brian and I were terrified that CHOP had detected cancer that had not responded to treatment or worse--had progressed. Our team at Duke reassured us that Charlotte was not only responding to treatment but was in the best possible situation going into transplant with minimal if not zero disease detected. They did not believe CHOP found anything new but that their radiologists see many more cases of Neuroblastoma and so their expertise in this matter is exceptional. I couldn't write about this new finding back during transplant because a) we were so busy and focused on getting Charlotte through transplant and b) we were afraid and knew we had several weeks away until we could meet with the doctors at CHOP and get an answer as to what their oncology-radiology team sees and believes.
However, after meeting with the doctors at CHOP, we feel much better about this new spot they believe needs to be radiated. We reviewed her scans with them again from March to compare with the most recent ones from September. It was hard to look back to those first scans again. Gut wrenching to see all the cancer glowing from the uptake of this MIBG contrast that only Neuroblastoma absorbs. But Brian and I could both see what they are questioning as potentially stubborn cancer in her right Tibia. We agreed that we want to radiate anything questionable. We feel so grateful for this second opinion that has revealed this area of concern. CHOP is a world leading hospital for Neuroblastoma. They are also a leader in NB research. They believe this spot is an example of an area that could cause relapse in many children and that research has shown it improves chances to radiate these potential bony legions. We cannot tell if this cancer was in her marrow and would have potentially been cleared by these last 2 rounds of high dose chemo during transplant or if this cancer is in her bone, which is much more hard to remove so radiation is the best treatment for stubborn bony areas.
At CHOP, Charlotte was under anesthesia while they made a mold of her little body so that she would be positioned very precisely during all of her Proton beam therapy. They also gave her a few teeny tiny tattoos to help with exact placement. They have recommended Charlotte undergo 20 rounds of radiation which will span 4-5 weeks. Radiation will be Monday-Friday in the mornings since she can't eat until after anesthesia. It's hard to imagine her waking up everyday, making our way in to the hospital from wherever we will live out patient, and then her to be put back to sleep under anesthesia for treatment every day. But this is what it will take and we will meet it head on. The doctors reassured us kids like Charlotte tolerate the anesthesia and the radiation aspects of this therapy remarkably well. She may have some nausea and fatigue but nothing compared to what she's already been through. There is also potential for some stunted growth in her leg and part of her spine that the proton beams would radiate. But we will most likely have many afternoons where we can have some fun exploring fun things to do in Philly. We will do our best to turn this time into a strange mini get away. Brian and I are planning where to live as well as a surprise flight for us to bring the kids up for a few days mid treatment. Brian will also come spend a week with her so I can come back home to see the kids for a few days. We can do this. She can do this. She will soldier on with the grace and love of God. We are beyond hopeful and grateful for this opportunity.
To say CHOP and the University of Penn medical facility that houses the Proton beam radiation machine is impressive is an understatement. This place is world class. The staff and doctors were ready for Charlotte after learning all about her over the past 2 months. The oncologist even echoed our own team in her use of words saying Charlotte has had a "remarkable" response to treatment! That gave us a huge smile. They also asked us all about Taylor and Parker and their well being. The facilities were beautiful. The patient/family services was personalized and every detail of a patients experience was carefully thought through. I mean, they even gave us gift cards towards lunch, validated parking, had a bazillion employees to help you from directing you to the parking spot that's open to pushing the elevator button for you to a welcome cart with beverages. At a lunch cafe, there were 2 gentleman playing live music in their guitar and mandolin. We kept being amazed looking around and asking ourselves, where are we?! This will be the strangest "vacation" from our life we have ever been on for sure. And I know this is no vacation. There are risks as there are with everything and we are by no means even completely out of the woods from her transplant as Drs are still closely monitoring many facets of her recovery while keeping an eye on some numbers that we hope to see improvement in over the next few weeks BUT this little girl deserves some fun. We want to have an adventure full of memory making moments and joy and laughter. So that is our plan--radiation in the morning, and having fun the rest of the time following Charlotte's lead as to what she is able to do. AND Bonus points for CHOP being 30 miles or so from Pops and Mimi (Brian's dad Doug and his wife Joanne)!!
For now, Charlotte will have 2 weeks home with just her normal clinic check up appointments before we move her up and begin radiation on February 9th. If we stay close to schedule, we should be finished and back home sometime the week of March 6. Then we will begin to plan for her next and final big phase of treatment: 5 months of immunotherapy. But for now, we are just trying to keep up with our little busy bee who is feeling so good and is full of life and energy. Her big sister and brother love having her home, but are adjusting to having a pesky little sister back home again. Charlotte is also adjusting to the flow of the household where she is not the only child lol. She isn't always use to sharing daddy and mommy's attention or not getting exactly what she wants when she wants it. But oh to be able to actually parent again feel so so good. We are eternally grateful for Nana Schuey and Poppy who continue to be the consistent and loving grandparents that are running our world in the background. They are the primary care givers for Taylor and Parker when we are away, caring for Lucy like she was a 2-legged baby, and taking care of all the details at home. I like to think all of these duties are helping to keep them young and on their toes! They are such a blessing as are all of you who bring a meal, say a prayer, help with groceries, or help provide fun and play to Taylor and Parker.
We continue to be overwhelmed by the generous spirit of each and everyone of you in our amazing village. We have received so many gifts over the year: from gift cards, to special things for the children, to cards and letters and prayer chains, to funds that we have put into Charlotte's account to use as needed. We wanted to let everyone know that we have heard many of you asking "What do you all need? What can we do?" It is overwhelming in a good way. You have already done it. Your prayers combined with our own unrelenting ones have been heard. Charlotte is doing the "remarkable" and she will keep going, keep moving. Many have asked if they can give and if so how. Some people closest to us have asked to help start a Benefit Fund for Charlotte. Brian and I understand this disease. We have learned what it can do. Our hope is that we will never have to fundraise for Charlotte personally, but we do not know if this will be the case in her future either. We do anticipate starting a foundation in the future with the hopes to give back and help other families and children as they battle what Charlotte has hopefully beaten. That's our hope. For now, we are so appreciative of any of your gifts in any form: the giving of your time and prayers, help with our children, food and supplies, or the monetary kind. We do have an account we set up a while ago for Charlotte's short and long term care needs. We are able to deposit funds into her account for use towards any needs or out of pocket costs insurance doesn't cover. Brian continues to work as hard as possible to continue to support our family, but sacrifices have and will be made along with a temporary slowing down in business as we pool all of our efforts to care for Charlotte over this past year and in this new year. Although income has naturally been affected, we are grateful for our savings and for our insurance. For anyone who has been asking how to give directly to Charlotte, Brian's sister Lynn ( lrsaltz74@yahoo.com) and our good friend Deborah ( deborahmjenkins@gmail.com) are happy to help provide information for how to do this. But for now, we do not plan to do any specific fundraising at this time with the hopes that Charlotte can continue being successful on the current protocol with therapies that have been recommended and approved through our insurance. Clinical trials and experimental treatments are not covered by insurance...and we pray to God every day that that will not be the road we turn down as we watch our baby girl defeat this beast. Thank you God for giving her to us and for giving us this blessed life where we can feel your love every step of our way.
On our way up to CHOP
Nap time
Stopping for lunch. A stranger came up to Brian to let us know how beautiful she thought Charlotte was and how she finished cancer treatment. She smiled and waved at Charlotte who smiled and waved back. She came over and showed Charlotte a picture of her on her phone from last year when she too had no hair. We pointed out to Charlotte where you can see and feel some hair growing in!
Dinner break fun
Charlotte tackles philly!
Riding a shuttle to dinner with Pops and Mimi!
At dinner, a Girl Scout troop leader gathering was taking place. A few ladies came over to Charlotte, handing her a bag of Girl Scout goodies and said they can't wait for her to grow up and maybe joining a Girl Scout troop 😊
Child life fun at CHOP
Stopped by my mom's for a quick overnight as me and Brian decided last minute to break up the trip coming home.
Princess storm trooper?!?
Trains with Choo Choo
Dress up play with Grandma
At the playground with nana Schuey and poppy after we got home Wednesday.
Charlotte getting measured today at check up. She is growing! And maintaining her weight just fine without any interventions needed!
A rainbow sent to us today from our friend Sharon. We will keep chasing these rainbows from above. Thank you God
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