Thanks for your prayers over the past week. Havyn’s ANC level is back up to 1000 so the break from chemo was just what the doctor ordered. 1000 is still low, but not dangerously so. As I type she’s watching Daniel Tiger and getting her chemo. She’s in great spirits as always. And after this she doesn’t have chemo again until November 8! It will be great to have a little break. She’ll still have to get some blood counts, but she won’t need her port accessed. Yippee!
We did learn today the results of her endocrinology labs they drew a few weeks ago. We don’t know to what level, but her “insulin growth factor” is elevated. Apparently that can be connected with NF-1 patients with an optic pathway glioma, one of the tumors she has. We are having her results faxed to the endocrinologist in St. Louis and will know more soon about what are next steps are there. We were already scheduled to have our first visit with them in March, but guessing we’ll probably need to get that moved up.
In other news, please pray for Tammy’s mom, Virginia. (Better known as Mamaw) She was recently diagnosed with uterine cancer. She had a CAT scan this morning to make sure there’s nothing else there to worry about. They believe she is stage 1 and that they can get the cancer out surgically. Please pray that this is the case. And pray for her and Tammy’s family. They lost Papaw a few years ago to cancer. This is understandably an emotional journey.
Finally I wanted to share a couple things with anyone who is interested. Many have asked us about NF-1 and I’m including a couple resources that will be educational and inspirational. You can click the infographic to the right to learn more about NF-1. Then, watch the video below from The Children’s Tumor Foundation (CTF). They are on the forefront of NF research and are an incredible organization. Their mission is: Drive research, expand knowledge, and advance care for the NF community. And I love their vision: End NF. If you’re looking to make some end-of-year donations, consider CTF and help them pursue their vision to eliminate this disease.
This video talks about NF heroes like our Havyn. Be warned that some of video may be a bit disturbing.
Thanks for your love and support! Stay tuned for a pretty amazing story about Tammy’s encounter with Nonie & Ruthie this morning.