All the If's
We know we are not alone in feeling so uncertain during these uncertain days due to this pandemic. It is hard out there for everyone. But truth is our little fighter suddenly has more obstacles in her way. She has added challenges to face in light of the global and national changes. There are things beyond our control at this time that may impact her access to treatment that she needs to receive in order to help her overcome her cancer. And our fears are mounting.
Charlottes odds at starting the necessary Vaccine trial up at MSK in NYC are being stacked against her. FIRST of all, we need to complete scans this week and like other institutions, Duke Children's has strict policies in place at this time which may impact her having her scans. Charlotte has had slight respiratory illness symptoms for over a week now that we believe are likely due to seasonal allergies or a mild cold if anything. She has a slight stuffy nose and an occasional productive cough. Upson checking in, patients will be screened and temperatures taken. Although she hasn't had any fevers, her other symptoms could cause her to be turned away at check in tomorrow. I've already contacted our team to ask if they can grant her any special clearance. Obviously even if she had a fever, we would have to be seen at the hospital instead of turned away anyway due to her fever protocol because of her port! Everything is so wonky right now and I understand why, but we also need her to be considered as an individual at this time. SECONDLY, if she is allowed to proceed to her appointment, will they clear her again for sedation? We already rescheduled due to chest congestion and sedation safety. And Charlotte is not wanting to cooperate unsedated. THIRD, we need her scans on Tuesday and Wednesday to return CLEAR with no evidence of any disease. Then, our hopes is to return to Duke Friday for surgery to remove her port. That way a fever for any reason won't land her in the hospital for blood cultures and IV antibiotics. FOURTH, we need MSK to provide feedback to us that Charlotte's clinic appointment to receive vaccine injection #1 on Tuesday March 24 is still on schedule because her bone marrow biopsies expire on March 26. Which means if she is delayed we would have to repeat those....no one wants that. The trial requires 3 injections in 3 weeks so we have THREE Tuesdays in a row to be seen there. Obviously traveling at this time is difficult and we have to travel 3 separate times within this 3 week window. FIFTH, we need to be able to access NYC and figure out our transportation and where we will stay as the RMH has a positive case of COVI-19 and they have just cancelled our reservation.
All of this feels like mountains that have suddenly sprung up in front of us. Mountains that no one can move. Mountains that God may not even move and we won't know why. Why might our baby girl not get what she needs to help her body rid itself of what is trying to steal her childhood, and take her away? How many more times will Brian and I feel helpless to help our daughter on this journey?
I write all of this with guilt in my momma heart because I am selfishly, though rightly, thinking of our daughter alone. Yet I know there are many families being denied access to treatment due to all the travel bans and restrictions. MSK will not see any international patients and they have many. I cannot imagine the fear and heatbreak families in active treatment must be going through just to try to help their child receive life saving treatment. Yet this is their reality. And in a way, it is ours too.
Lord, you have taken care of our baby girl all of this time and provided for her even when we couldnt see it. Help us surrender our worries to you. Help us know what is right and to continue to have the courage to keep following your lead, even when we can't see where we are going. With so many people going through many unimaginable circumstances, with all of the isolation and fear and uncertainty, help us be your hands and feet and voice so that we may work together and rise above the circumstances around us. I see you weaving, I feel you here. I see you helping us try to love our neighbors well. But Lord I am among many who are afraid. Not for myself, but for the ones we love the most. Please keep carrying us forward so that Charlottes beautiful light can keep lighting the way forward. She needs to keep going, keep moving. And we need to keep believing.
Keep your prayers coming everyone. We seem to have a long list suddenly to pray about. Most importantly that our girl is still in the CLEAR with no evidence of neuroblastoma. We appreciate everyone taking the time during these disconcerting days to lift her up. May God keep hearing our prayers.
Charlottes odds at starting the necessary Vaccine trial up at MSK in NYC are being stacked against her. FIRST of all, we need to complete scans this week and like other institutions, Duke Children's has strict policies in place at this time which may impact her having her scans. Charlotte has had slight respiratory illness symptoms for over a week now that we believe are likely due to seasonal allergies or a mild cold if anything. She has a slight stuffy nose and an occasional productive cough. Upson checking in, patients will be screened and temperatures taken. Although she hasn't had any fevers, her other symptoms could cause her to be turned away at check in tomorrow. I've already contacted our team to ask if they can grant her any special clearance. Obviously even if she had a fever, we would have to be seen at the hospital instead of turned away anyway due to her fever protocol because of her port! Everything is so wonky right now and I understand why, but we also need her to be considered as an individual at this time. SECONDLY, if she is allowed to proceed to her appointment, will they clear her again for sedation? We already rescheduled due to chest congestion and sedation safety. And Charlotte is not wanting to cooperate unsedated. THIRD, we need her scans on Tuesday and Wednesday to return CLEAR with no evidence of any disease. Then, our hopes is to return to Duke Friday for surgery to remove her port. That way a fever for any reason won't land her in the hospital for blood cultures and IV antibiotics. FOURTH, we need MSK to provide feedback to us that Charlotte's clinic appointment to receive vaccine injection #1 on Tuesday March 24 is still on schedule because her bone marrow biopsies expire on March 26. Which means if she is delayed we would have to repeat those....no one wants that. The trial requires 3 injections in 3 weeks so we have THREE Tuesdays in a row to be seen there. Obviously traveling at this time is difficult and we have to travel 3 separate times within this 3 week window. FIFTH, we need to be able to access NYC and figure out our transportation and where we will stay as the RMH has a positive case of COVI-19 and they have just cancelled our reservation.
All of this feels like mountains that have suddenly sprung up in front of us. Mountains that no one can move. Mountains that God may not even move and we won't know why. Why might our baby girl not get what she needs to help her body rid itself of what is trying to steal her childhood, and take her away? How many more times will Brian and I feel helpless to help our daughter on this journey?
I write all of this with guilt in my momma heart because I am selfishly, though rightly, thinking of our daughter alone. Yet I know there are many families being denied access to treatment due to all the travel bans and restrictions. MSK will not see any international patients and they have many. I cannot imagine the fear and heatbreak families in active treatment must be going through just to try to help their child receive life saving treatment. Yet this is their reality. And in a way, it is ours too.
Lord, you have taken care of our baby girl all of this time and provided for her even when we couldnt see it. Help us surrender our worries to you. Help us know what is right and to continue to have the courage to keep following your lead, even when we can't see where we are going. With so many people going through many unimaginable circumstances, with all of the isolation and fear and uncertainty, help us be your hands and feet and voice so that we may work together and rise above the circumstances around us. I see you weaving, I feel you here. I see you helping us try to love our neighbors well. But Lord I am among many who are afraid. Not for myself, but for the ones we love the most. Please keep carrying us forward so that Charlottes beautiful light can keep lighting the way forward. She needs to keep going, keep moving. And we need to keep believing.
Keep your prayers coming everyone. We seem to have a long list suddenly to pray about. Most importantly that our girl is still in the CLEAR with no evidence of neuroblastoma. We appreciate everyone taking the time during these disconcerting days to lift her up. May God keep hearing our prayers.
One of Charlotte’s wish granters, Natalie, is participating in this event to help raise money for Wish Kids of NC. She asked Charlotte to make some thank you cards to her donors❤️
Staying busy while on school break, which may extend beyond our typical 3 week break due to the pandemic. Me and the kids helped our elementary schools club Kids Corp pack bags of food to send home with the food insecure students so they won’t go without enough over the long break. It feels good to show our kids how we can love our neighbors especially in times like these.
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