Lala land
Tomorrow, Charlotte and I fly back up to NYC for her appointments at a Memorial Sloan Kettering. It’s hard when it is time to face this disease again. It’s been such a nice break but it’s time to leave lala land and get back to the work of kicking cancers ass. However comfy we might feel at the moment, even when the tiny voice inside might say with a groan, “ugh I don’t wanna. It’s nice and cozy right here. Aren’t we done? Do we have too?”, like a child might say on a morning they’d rather stay home and play with their toys and do whatever things they love doing, we cannot rest for long. And at the end of the day, man are we so grateful for the fight. Sometimes, we may not want to go to work, but isn’t it a great blessing to even have the job. To still have the same mission and goal, be moving in the same direction. And to be needed. To have been given a mountain to move so that perhaps it shows others that it can be moved. (Don’t quote me 😁I read that somewhere a long time ago and loved it!).
So, Thursday and Friday Charlotte will have lab work done, receive her 5th of 7 Neuroblastoma Vaccine injections, and have a 4 point bone marrow biopsy. This biopsy is required for monitoring, similar to scans. Sloan likes very thorough bone marrow biopsies and requires them in 4 locations along the front and back of her pelvis. The recovery is a bit more painful. We can still see the holes that were drilled from the last one in September. They generally the like to do them every 3 mont but they let us wait until our return trip this month instead of having to go back up there in December and we were really grateful for that! It’s been the longest break yet as far as monitoring. As much as I love not having to be in clinic for work ups...I gotta tell you both Brian and I are kinda uneasy about the lack of monitoring. We are just so use to knowing her labs for blood work and counts and chemistries, etc. This information obtained through blood work helps paint a good picture of Charlotte’s health and it feels strange to not be watching it all so closely. They told us it would take a while to get use to it but sometimes it’s all I can do not to pack her up in the car and drive to Duke to ask for her to have a check up. I have a little talk to myself when I feel anxious and we usually come to the co clusion that she is doing great and it’s not needed. We know if we ever have a worry or concern, Duke would see her in a heartbeat. But seriously, it’s been 8 weeks since she’s been seen and that feels like an eternity. Put this on the list of things I never thought I’d say (right along with things like please stop putting your fingers in your sisters eyeballs!, or why are there legos in your underwear?, or No please don’t lasso the poor dog with my robe’s sash!....all truly recent comments from either Brian or I 🤣), but seriously, I need some blood/lab info and I need it stat.
Thank you for your prayers this week, especially for her bone marrow to come back completely unremarkable. It’s not just Neuroblastoma they look for. The information they get from her biopsy paints an important picture of how her bone marrow is doing. There is unfortunately a myriad of issues kids who have gone through the treatment that Charlotte has faces. And we just keep on praying that somehow, she is protected from some of the more harmful and dangerous side effects. Unfortunately, it’s not just cancer she is up against. The harsh treatment she’s been through can have a whole host of other issues.
Finally, to all of you in our village who have been praying for Kenna and Miles. Keep at it. Each has had some improvements but neither is out of the woods. Miles is still on life support but appears to be trying to make the turn towards recovering from RSV. However, he needed to start dialysis along with some other things and he is still obviously not awake. His parents and drs are very hopeful though. And Kenna, also on lots of machines and like Miles is still sedated, is having massive swelling believed to be the tumor screaming as her labs that show Cell death turnover are off the chart. Drs believe it’s the suddenly massive aggressive tumor being killed! She has a long road and the fluid is a danger but they have a good plan. I’ll keep updating you all❤️🌈 Thank you all so much. And thank you God as we prepare to enter this fighting ring again so Charlotte can keep moving, keep going.
(I’m still trying to figure out why I’m having trouble uploading pictures to the blog so I’ll continue to work at that when I have time. For now, here is a cute video I had to share from Super Bowl Sunday! I can upload from YouTube. For those of you can’t click the link because you get these updates via email rather then online, here is the link to copy and paste)
https://youtu.be/qR95c7kOClU
So, Thursday and Friday Charlotte will have lab work done, receive her 5th of 7 Neuroblastoma Vaccine injections, and have a 4 point bone marrow biopsy. This biopsy is required for monitoring, similar to scans. Sloan likes very thorough bone marrow biopsies and requires them in 4 locations along the front and back of her pelvis. The recovery is a bit more painful. We can still see the holes that were drilled from the last one in September. They generally the like to do them every 3 mont but they let us wait until our return trip this month instead of having to go back up there in December and we were really grateful for that! It’s been the longest break yet as far as monitoring. As much as I love not having to be in clinic for work ups...I gotta tell you both Brian and I are kinda uneasy about the lack of monitoring. We are just so use to knowing her labs for blood work and counts and chemistries, etc. This information obtained through blood work helps paint a good picture of Charlotte’s health and it feels strange to not be watching it all so closely. They told us it would take a while to get use to it but sometimes it’s all I can do not to pack her up in the car and drive to Duke to ask for her to have a check up. I have a little talk to myself when I feel anxious and we usually come to the co clusion that she is doing great and it’s not needed. We know if we ever have a worry or concern, Duke would see her in a heartbeat. But seriously, it’s been 8 weeks since she’s been seen and that feels like an eternity. Put this on the list of things I never thought I’d say (right along with things like please stop putting your fingers in your sisters eyeballs!, or why are there legos in your underwear?, or No please don’t lasso the poor dog with my robe’s sash!....all truly recent comments from either Brian or I 🤣), but seriously, I need some blood/lab info and I need it stat.
Thank you for your prayers this week, especially for her bone marrow to come back completely unremarkable. It’s not just Neuroblastoma they look for. The information they get from her biopsy paints an important picture of how her bone marrow is doing. There is unfortunately a myriad of issues kids who have gone through the treatment that Charlotte has faces. And we just keep on praying that somehow, she is protected from some of the more harmful and dangerous side effects. Unfortunately, it’s not just cancer she is up against. The harsh treatment she’s been through can have a whole host of other issues.
Finally, to all of you in our village who have been praying for Kenna and Miles. Keep at it. Each has had some improvements but neither is out of the woods. Miles is still on life support but appears to be trying to make the turn towards recovering from RSV. However, he needed to start dialysis along with some other things and he is still obviously not awake. His parents and drs are very hopeful though. And Kenna, also on lots of machines and like Miles is still sedated, is having massive swelling believed to be the tumor screaming as her labs that show Cell death turnover are off the chart. Drs believe it’s the suddenly massive aggressive tumor being killed! She has a long road and the fluid is a danger but they have a good plan. I’ll keep updating you all❤️🌈 Thank you all so much. And thank you God as we prepare to enter this fighting ring again so Charlotte can keep moving, keep going.
(I’m still trying to figure out why I’m having trouble uploading pictures to the blog so I’ll continue to work at that when I have time. For now, here is a cute video I had to share from Super Bowl Sunday! I can upload from YouTube. For those of you can’t click the link because you get these updates via email rather then online, here is the link to copy and paste)
https://youtu.be/qR95c7kOClU
This last video is a long one y’all but I had to get a clip of her playing barbies because currently her favorite thing to play is Barbie married Ken and they have a baby. Her imagination at play is like pure magic to behold😍So wanted to share a bit of it below
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