The strangest "vacation" ever
After a couple of weeks home to recover after her second stem cell transplant, including a week where all 5 of us took turns have the norovirus UGH 😩, we are now in Philly where Charlotte is beginning Proton Beam Radiation Therapy here at CHOP and U of Penn! Besides being away from each other for this month long process, from everything we've been told, this part of her treatment will be much much easier then transplant on our girl. She will have 20 rounds of radiation on her abdomen and 15 on her right Tibia. Because it is so precise, Charlotte will need to go under anesthesia every day for this treatment. Her appointments will be everyday during the mornings Monday through Friday for 4-5 weeks. Weekends are free and this is all done as OUT PATIENT which is why right now I feel like I'm on some strange vacation from our life. Typing this update on the couch while Charlotte is asleep, sipping a glass of wine and looking out huge windows down into the busy city night life. Another example of Gods grace.
We found a great 1 bedroom 1 bath high rise apartment with a wall full of windows that overlooks down into the city. We are paying for a monthly parking lot pass here so that we don't have to rely on public transportation and can have a car on weekends etc. The apartment is across the street from a Trader Joe's grocery store along with some other conveniences. We have a fully loaded kitchen, a washer and dryer, and it's clean and comfortable. We are only 1.5 miles from CHOP! The couch can even pull out into a bed for when Taylor and Parker come to visit in 2 weeks. We have some insurance benefits helping us fund our travel and lodging here in Philly, which has really helped ease much of the financial burden this would have caused. And grandparents continue to hold down the fort and help care for Parker and Taylor during this time. We truly hit the jack pot! I know this is not a vacation. I like Brian's analogy, "It's a business trip. Charlotte's going to work." He's right. She really is going back to work. This radiation is such an important part of her fight. It will help destroy microscopic disease left behind from her abdominal tumor resection and also any cancer that may have been present prior to transplant in her right Tibia, which is a classic location for disease to return. But this time, her work will have some deserved perks. We aren't hospitalized! She has much free time left in her day and all weekend. We can play or relax or explore or see family and friends as she feels up to it. Children tend to tolerate the level of radiation Charlotte will receive pretty well. She should not feel anywhere close to where she was during transplant. She "goes to work" in the morning M-F and has the rest of the time to be a kid and have some much deserved fun. Watching her go under anesthesia, handing her over for this every day will be the hardest part for Brian and I. But if she can do this, we can do this!
Brian flew back home this afternoon and will return in 8 days to switch off with me. So for now, look out Philly! We are country girls in the city and we are ready to soak up this time living up the life our baby girl is fighting so hard to be in. She's doing it. And we will keep going, keep moving. Your prayers helped lift us up when we needed it most and they have helped her get to this point in treatment. We continue to thank god every day for this fight and for this wonderful wonder-filled life❤️🌈
We found a great 1 bedroom 1 bath high rise apartment with a wall full of windows that overlooks down into the city. We are paying for a monthly parking lot pass here so that we don't have to rely on public transportation and can have a car on weekends etc. The apartment is across the street from a Trader Joe's grocery store along with some other conveniences. We have a fully loaded kitchen, a washer and dryer, and it's clean and comfortable. We are only 1.5 miles from CHOP! The couch can even pull out into a bed for when Taylor and Parker come to visit in 2 weeks. We have some insurance benefits helping us fund our travel and lodging here in Philly, which has really helped ease much of the financial burden this would have caused. And grandparents continue to hold down the fort and help care for Parker and Taylor during this time. We truly hit the jack pot! I know this is not a vacation. I like Brian's analogy, "It's a business trip. Charlotte's going to work." He's right. She really is going back to work. This radiation is such an important part of her fight. It will help destroy microscopic disease left behind from her abdominal tumor resection and also any cancer that may have been present prior to transplant in her right Tibia, which is a classic location for disease to return. But this time, her work will have some deserved perks. We aren't hospitalized! She has much free time left in her day and all weekend. We can play or relax or explore or see family and friends as she feels up to it. Children tend to tolerate the level of radiation Charlotte will receive pretty well. She should not feel anywhere close to where she was during transplant. She "goes to work" in the morning M-F and has the rest of the time to be a kid and have some much deserved fun. Watching her go under anesthesia, handing her over for this every day will be the hardest part for Brian and I. But if she can do this, we can do this!
Brian flew back home this afternoon and will return in 8 days to switch off with me. So for now, look out Philly! We are country girls in the city and we are ready to soak up this time living up the life our baby girl is fighting so hard to be in. She's doing it. And we will keep going, keep moving. Your prayers helped lift us up when we needed it most and they have helped her get to this point in treatment. We continue to thank god every day for this fight and for this wonderful wonder-filled life❤️🌈
On our way!
She's like her mom: she loves to sing in the car
Stop of lunch and a must have pickle
Got to see my mom (Grandma) at lunch!
Starbucks cake pop pick me up on our 9 hour trip
Arrived at our apartment! We certainly aren't in Apex NC anymore
Ready to start round 1 of 20
This is her Proton Radiation Machine. It's 3 stories high. We are 2
Floors underground here! Under the white sheet is a body mold they made which conforms to Charlotte's body's, along with tiny tattoos they gave her to help with the precise positioning. It looks like something out of NASA. It will shut down, requiring recalibration if it is off more then 1 millimeter. Unreal
Day 1 is a snowy morning here in Philly. Big. Eautifuk flakes. Got maybe 2 inches
Brian and I play old school arcade games in the waiting room while our baby girl is receiving the most technologically advanced treatment possible lol 😂 .
Mac and Cheese with a view from our apartment
Window views!
Evidently she's settling in here nicely! All the required dress up essentials have been packed
Celebratory nails after day 1 of course
Here are some pictures of our last days at home in between
her Second SCT and beginning radiation! Minus stomach virus pics 😂
My sidekick.
Double fisting her goodies from dry cleaners
She'll follow her big sister any where. These 2 have been inseparable
Fun at the park
Lazy footsie PJ morning home playing. It's amazing how we use to take these days for a given
She wanted to dress up,put on her rain boots, and dig for bugs. "They're hibernating mommy"
Making a beetle she found a habitat
Soaking up a gorgeous day outside before we head to the cold in Philadelphia
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