Road warriors HOME❤️🌈
Charlotte did great for the first of 7 Neuroblastoma vaccine injections. And our travels were “easy peasy lemon squeezie” as Charlotte would say. Due to the CODVID19 restrictions and quarentines, the traffic was nonexistent. What would usually be full of congestion and bumper to bumper traffic, was almost an eerie empty stretch of road. I’ve never seen anything like it. It is evident that everyone is in fact staying home. During certain parts of our drive we wouldn’t see many cars at all and it was fun to approach someone and wave “hi! Another human!” And Charlotte is a great traveler. So we were able to drive up Monday and get home late Tuesday night! My focus was on keeping us away from contact as much as possible. NY and NJ have 5 times the transmission rate as anywhere else in the country. So although not an ideal time to go there, we did what we must to get Charlotte on this important maintenance trial so she can continue her fight.
We will need to make this trip up to NY on Monday and back Tuesday for the next couple weeks as they give the shot once a week for 3 weeks before the injections start to spread out. Our doctors in NY said they expect COVID19 to peak over the next 2-3 weeks and then start to improve. So we will do the best we can to avoid contact and stay safe. Although it’s a far drive for us, taking about 8 hours with hardly stopping (as we packed our food, drink, and snacks), it’s a relatively easy one with no traffic.
Yesterday, Charlotte also started the oral medicine that accompanies the vaccine trial. She takes a very large volume of a very viscous liquid called Beta Glucan 2 weeks on and 2 weeks off for the entire year. She takes in on an empty stomach and it’s not the best tasting medicine, but she manages it. Beta Glucan helped increase the immense response they try to create with the vaccine. When they sent me home with her first supply, I must admit, my stomach dropped. We had celebrated her last dose of this back in fall of 2018 when we believed she was truly all done with all of this. The reoccurrence of her cancer has really shaken our foundation and when we wrap our mind around her having to repeat any of the treatment we believed she had moved beyond, our hearts break a little. BUT in the same breath, we know well enough to CELEBRATE that she is back in maintenance! That active treatment has been successfully completed, and that she reminds clear with no evidence of cancer. I know you all know this, but to be clear, having relapsed once, Charlotte is in a higher risk group for reoccurrence now. Her fight is not over. Our hope is she is invisibly fighting and maintaining her clear status while living a normal childhood for the next several years while we monitor her disease via scans and completing any and all maintenance possible (currently there are 2 options: the vaccine and an oral medication called DFMO. we may do them both). Since there is very little entailed with vaccine (and eventually DFMO), Charlotte will be just living life, hopefully without a care in her sweet little heart.
The current state of everything amid the COVID19 pandemic complicates things in many ways. Our kids will be out of school into atleast mid May now😳. Brian is required to work from home and is juggling his business, helping his clients from afar amid all the financial turmoil, while helping to care for the kids and our new puppy (who throws a wrench in many things at the moment although we love him). Charlotte and I have 3 more quick trips to NY and back for the vaccine between now and early May. The pandemic appears to be a moving target with a lot of uncertainty regarding when things will get back to “normal.” And we know we are not alone in trying to manage and juggle all of the sudden changes this creates in our lives. So, village, while your hearts and prayers reach out to us, we are also praying for you and your family. May we all take it one day at a time. May we face each day and the challenges they present as they come. May we lean on and into one another. May we find joy amid the chaos, maybe in new and surprising and unexpected ways. May we keep our humor because I swear that is one of the ways God helps reach us and give us grace. May we laugh when we can and find the simple. May we reach out to our neighbors and help in any way we feel called. We all have gifts and now is a great time to share them, even in the simplest of ways. May we look beyond our own circumstances and find the bigger and more important picture that I believe is in front of our faces. No matter where we are, God’s light is shining the way. And I know we can overcome the dark. And be all the better for it.
#Charlottestrong #Familystrong
We will need to make this trip up to NY on Monday and back Tuesday for the next couple weeks as they give the shot once a week for 3 weeks before the injections start to spread out. Our doctors in NY said they expect COVID19 to peak over the next 2-3 weeks and then start to improve. So we will do the best we can to avoid contact and stay safe. Although it’s a far drive for us, taking about 8 hours with hardly stopping (as we packed our food, drink, and snacks), it’s a relatively easy one with no traffic.
Yesterday, Charlotte also started the oral medicine that accompanies the vaccine trial. She takes a very large volume of a very viscous liquid called Beta Glucan 2 weeks on and 2 weeks off for the entire year. She takes in on an empty stomach and it’s not the best tasting medicine, but she manages it. Beta Glucan helped increase the immense response they try to create with the vaccine. When they sent me home with her first supply, I must admit, my stomach dropped. We had celebrated her last dose of this back in fall of 2018 when we believed she was truly all done with all of this. The reoccurrence of her cancer has really shaken our foundation and when we wrap our mind around her having to repeat any of the treatment we believed she had moved beyond, our hearts break a little. BUT in the same breath, we know well enough to CELEBRATE that she is back in maintenance! That active treatment has been successfully completed, and that she reminds clear with no evidence of cancer. I know you all know this, but to be clear, having relapsed once, Charlotte is in a higher risk group for reoccurrence now. Her fight is not over. Our hope is she is invisibly fighting and maintaining her clear status while living a normal childhood for the next several years while we monitor her disease via scans and completing any and all maintenance possible (currently there are 2 options: the vaccine and an oral medication called DFMO. we may do them both). Since there is very little entailed with vaccine (and eventually DFMO), Charlotte will be just living life, hopefully without a care in her sweet little heart.
The current state of everything amid the COVID19 pandemic complicates things in many ways. Our kids will be out of school into atleast mid May now😳. Brian is required to work from home and is juggling his business, helping his clients from afar amid all the financial turmoil, while helping to care for the kids and our new puppy (who throws a wrench in many things at the moment although we love him). Charlotte and I have 3 more quick trips to NY and back for the vaccine between now and early May. The pandemic appears to be a moving target with a lot of uncertainty regarding when things will get back to “normal.” And we know we are not alone in trying to manage and juggle all of the sudden changes this creates in our lives. So, village, while your hearts and prayers reach out to us, we are also praying for you and your family. May we all take it one day at a time. May we face each day and the challenges they present as they come. May we lean on and into one another. May we find joy amid the chaos, maybe in new and surprising and unexpected ways. May we keep our humor because I swear that is one of the ways God helps reach us and give us grace. May we laugh when we can and find the simple. May we reach out to our neighbors and help in any way we feel called. We all have gifts and now is a great time to share them, even in the simplest of ways. May we look beyond our own circumstances and find the bigger and more important picture that I believe is in front of our faces. No matter where we are, God’s light is shining the way. And I know we can overcome the dark. And be all the better for it.
#Charlottestrong #Familystrong
Quarantine life. Chase is living his best life during all of this and is loving having everyone’s attention
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