Yay! Imm looks great! All numbers seem to be trending down, including PET. We like our new doc a lot. Ill update more when I can, but for now, it's great news!
Monday, March 31, 2014
Update 3/31 :: Off we go
It's 5:30 in the morning on Monday, and we're about to wake up Immy Claire to head to Egleston. Today's a big day. She'll get her PET scan around 9-10. Rather than waiting for results, we're actually meeting with her new oncologist today to go over the results as soon as they're in.
Pray for peace, pray that Immy is super happy, and pray that everything goes quickly and smoothly. We'll know a lot more about our next steps this afternoon. Thanks to everyone on Team Imogen for your prayers and thoughts today.
AJ
Sunday, March 23, 2014
Update 3/23
What a week! Thank you to everyone who came out on Monday to Chick fil a! A lot of nuggets were consumed, the kids had a blast, and we were blown away by the generosity of all who came.
We're still getting pictures in from the different locations, but we've seen and heard stories from each one. Thank you!
By way of update: Imogen's next PET scan was indeed moved up. Rather than waiting 12 weeks (or 6 months, which is what the previous doctors said), our doctors in Cincinnati and Atlanta agreed on the need to scan again, sooner rather than later.
Frankly, I'm scared. I'm thrilled to be in more capable hands, but this next scan could change everything. If the SUV score continues to rise, then that's bad news. So, please be in prayer for Imogen and us as we head toward the PET appointment on March 31.
Also, pray we don't have any more issues with our insurance. They initially rejected coverage on her last PET before "reversing the adverse decision" in a letter. Just pray that trend continues. From our bills, an uncovered PET is about $12k. Obviously, we'd do it anyway, but it'd be nice to have coverage on it.
To those who have ordered a shirt via the GoFundMe account, I promise it's coming! We ordered some more, and they'll be sent this week, as soon as they're printed. Don't forget to give your address, and your shirt size(s) when you order!
We're still getting pictures in from the different locations, but we've seen and heard stories from each one. Thank you!
By way of update: Imogen's next PET scan was indeed moved up. Rather than waiting 12 weeks (or 6 months, which is what the previous doctors said), our doctors in Cincinnati and Atlanta agreed on the need to scan again, sooner rather than later.
Frankly, I'm scared. I'm thrilled to be in more capable hands, but this next scan could change everything. If the SUV score continues to rise, then that's bad news. So, please be in prayer for Imogen and us as we head toward the PET appointment on March 31.
Also, pray we don't have any more issues with our insurance. They initially rejected coverage on her last PET before "reversing the adverse decision" in a letter. Just pray that trend continues. From our bills, an uncovered PET is about $12k. Obviously, we'd do it anyway, but it'd be nice to have coverage on it.
To those who have ordered a shirt via the GoFundMe account, I promise it's coming! We ordered some more, and they'll be sent this week, as soon as they're printed. Don't forget to give your address, and your shirt size(s) when you order!
Monday, March 17, 2014
Update 3/17 : Spirit Night and Oncological Adjustments
Don't make plans for dinner tonight.
Well, make them, as long as they include Chick-fil-a. Normally, I love St. Patrick's Day anyway, because I love harping on my diluted Irish heritage (much to the disdain of my real Irish "sister," Hannah.)
But today is even better because it is Spirit Night for Imogen at seven Gwinnett Chick-fil-a's! See my last post for all the locations that are in on it. If you're in the area, stop by, grab a bite, and say "Team Imogen!"
Also, we will have t-shirts for sale, too! They're $15 and adorable:
I've had some of you ask how to get a shirt if you're not local. First, let me say thank you for loving an supporting Immy from afar. Second, I can mail you one. Just go to our GoFundMe page, and donate $20 or so to cover post, and leave your address in a private message.
Update time
After a lot of prayer and discussion with Tam, we have decided to switch oncologists for Immy Claire. With all the uncertainty around the last PET Scan, we reached out to the doctor in Cincinnati to get his input. We feel very good about the decision to change, but there's definitely more concern about the increased counts and size. He has recommended moving up Tiny's next scan date to the beginning of April to see if the score comes back down or continues to climb.
After a lot of prayer and discussion with Tam, we have decided to switch oncologists for Immy Claire. With all the uncertainty around the last PET Scan, we reached out to the doctor in Cincinnati to get his input. We feel very good about the decision to change, but there's definitely more concern about the increased counts and size. He has recommended moving up Tiny's next scan date to the beginning of April to see if the score comes back down or continues to climb.
Per his recommendation, we are going to see another oncologist here in GA to see if she is a better fit for us. Fortunately, she has more experience and expertise than our soon-to-be ex-doctors.
Please continue to pray for our wisdom as we navigate this next month. One of the nation's top experts in neuroblastoma just told us on the phone that this is hard to figure out, and it's not an exact science. So pray for peace, for sound judgment, and of course for healing.
Monday, March 10, 2014
Chick-fil-a Spirit Night on March 17 for Imogen
Mark your calendars, folks! We are so blessed by the work of Linda Garner, Cindy Newsome, Robin Mauck, and many others at Chick-fil-a, as SEVEN stores are all sponsoring Immy on St. Patrick's Day, March 17. Basically, eat at one of the stores below from 5-8pm. That's it. Of course, feel free to make a night of it with the family and hang out. We'll also be selling Team Imogen t-shirts, finally! They're $15, and we'll sell 'em 'til they're gone.
Print this pic out, share it, and help us spread the word. I'll be getting extra waffle fries.
I got the addresses of each store, too, so pick whichever is most convenient!
Sugarloaf and 316
Print this pic out, share it, and help us spread the word. I'll be getting extra waffle fries.
I got the addresses of each store, too, so pick whichever is most convenient!
Sugarloaf and 316
Saturday, March 8, 2014
Update 3/8
The week of scans is behind us, finally! Imogen did great, and it made a world of difference that we got to use nitrous oxide again before the MRI.
Some updates on her counts:
Catecholamines/Urine counts:
The results from the latest sample was on par with previous results, as her HVA was 24.4 (compared to 24.9 in Feb) and her VMA is 11.3 (Feb was 11.8). As far as the differences, they're considered the same. So that's good news.
MRI:
Basically, the MRI looks the same, as far as we can tell. We met with our current oncologist, and he said everything looks stable. From here on out, we will only be getting an MRI in 3 months, unless something changes.
This seems to be really good news, as they're not concerned and the tumor is not spreading anywhere else. We're still a little uncertain because of the difference in the PET scans. The way each one was analyzed was completely different, so it's hard for us to figure out if anything changed. (For instance, this most recent PET noted a higher SUV score–aka malignancy–and seemed to identify it in more places).
Add to that the CUX1 results, and we're daily more aware of what we don't know. See, before, we had no clue either, but we were ignorant of our ignorance. As we progress, we discover more questions that don't seem to have answers. So pray for wisdom in making choices that aren't black and white. Pray for our decisions with our doctors, and mostly pray for sweet Tiny. Her hair is coming back, and she's starting to talk about being able to put clips and bows on. She seems to be doing so well, and I don't want her to have to go through any unnecessary treatments or scans anymore. But I also know that the right thing to do is seldom the most convenient.
Check back on Monday for an update on the Chick-fil-a spirit night for Imogen on March 17!
Some updates on her counts:
Catecholamines/Urine counts:
The results from the latest sample was on par with previous results, as her HVA was 24.4 (compared to 24.9 in Feb) and her VMA is 11.3 (Feb was 11.8). As far as the differences, they're considered the same. So that's good news.
MRI:
Basically, the MRI looks the same, as far as we can tell. We met with our current oncologist, and he said everything looks stable. From here on out, we will only be getting an MRI in 3 months, unless something changes.
This seems to be really good news, as they're not concerned and the tumor is not spreading anywhere else. We're still a little uncertain because of the difference in the PET scans. The way each one was analyzed was completely different, so it's hard for us to figure out if anything changed. (For instance, this most recent PET noted a higher SUV score–aka malignancy–and seemed to identify it in more places).
Add to that the CUX1 results, and we're daily more aware of what we don't know. See, before, we had no clue either, but we were ignorant of our ignorance. As we progress, we discover more questions that don't seem to have answers. So pray for wisdom in making choices that aren't black and white. Pray for our decisions with our doctors, and mostly pray for sweet Tiny. Her hair is coming back, and she's starting to talk about being able to put clips and bows on. She seems to be doing so well, and I don't want her to have to go through any unnecessary treatments or scans anymore. But I also know that the right thing to do is seldom the most convenient.
Check back on Monday for an update on the Chick-fil-a spirit night for Imogen on March 17!
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