Great news! Counts are down! We just got the results back from Imogen's urine test, and her HVA and VMA is the lowest they've been since everything started.
Thanks for the prayers, and we hope to see many of you at Buffalo's in Loganville tomorrow!
Mother's Day was a pretty special day for us. A year ago, we had gone to the hospital a few times by now, but we had no idea what the next year would hold for us. For our part, we're incredibly conscious of the highs and lows of parenting, distinctly attuned to the balance of setting a course but relying on God when things go wrong. Faith. Ugh. It's not easy.
Tammy has a post of her own coming up, so I'll let her elaborate later. but I wanted to update everyone on the latest developments with Imogen. (and Bubby. He's fine.)
I'll just say that we're grateful. We're so grateful to be parents; so grateful to still be able to say we're parents to two amazing children.
Imogen's last catechol counts in her urine showed that the HVA an VMA both went up. Again. [[When we got the last PET scan, one of the assurances we received was that these numbers had consistently been going down since diagnosis]] Needless to say, it's not the most encouraging news. After talking with our oncologist, we're not freaking out, but we have scheduled another urine test, to see if the counts are truly trending up. Our doctor says that tumors can do this, even as they're dying, but we want to be sure that we're on top of things.
Unfortunately, there's no magic number that tells us if something is wrong or ok. All we know are the trends. So we have a little bit of anxiety heading into Wednesday, and then looking forward to June for Imogen's next MRI. At this point, there's no reason to order another PET scan. Since last week, Tiny has had a bit of a cough. Bubby had croup, so it could be related to that, but she hasn't shown other symptoms.
So, of course, our minds go to the tiny but unexplained nodules on her lungs from the last PET/CT, and the "small" growth of the tumor shown in the last scan. So, after a couple of months with hardly anything new, we're getting accustomed to worry/faith/decisions/frustrations/uncertainty.
If things go poorly, then we do have a few options for different treatment, and we'll likely schedule a chest CT soon to see if those nodules have changed at all. There are some trials around the country that Imogen could be entered into, because her tumor didn't respond to chemotherapy. There's also Accutane, which is an option that is prescribed to some patients. It does a similar type of thing as chemo, trying to "dry out" and kill the bad cells. Accutane, for those lucky enough not to need it in high school, is one of the ingredients for popular acne medication. As many know, it dries you out big time. When it's used as cancer medication, it can be very uncomfortable. Cracked skin, bleeding lips, a lot of little pains.
By way of announcement, we have a fundraiser this weekend for Imogen. A sweet friend has organized a night 'o fun at Buffalo's Cafe in Grayson this weekend. There will be a silent auction, a car show, and tons more. Check out the Facebook Event for more info. We hope to see you there!
So, say a little prayer for all of us. For Tammy and me, that we would have peace and make the right decisions. We want to do what's needed, but I don't want to put Imogen through more treatment if it's not necessary. Most of all, I feel I need the faith to listen for God's leading, to listen to what He's telling Tammy, and to know what is best for Imogen. And what's best isn't often what's easy or what makes me feel like I'm in control of the situation.
Pray for Aaron. He may have the biggest heart of all of us. Pray that God's love will cover him, especially in times where he can't get the attention he deserves and needs from mommy and daddy.
Most of all, pray for Imogen. Pray for healing. Pray for her heart. She's so innocent, you guys; it's unbelievable the way she sees the world so purely. Most importantly, she sees herself as normal; her sweet spirit hasn't been spoiled by the dirtiness of worry or fear. She's been protected from that. It's a miracle and a testament. She has fought so hard, but is not battle-hardened. She's incredibly tough, but is as tender as any little girl deserves to be. For this, I'm so very grateful.
