What a difference a year makes. Immy last year vs. this year at the kids' Christmas bell thing.
Tomorrow morning, we go in again for an MRI, to see if the tumor has grown or changed since earlier this year. It's always a stressful and anxious time, and the mornings can be difficult for her (not allowed to eat or drink anything). Thank you for your prayers and continued support!
We are back from the hospital now, resting at home. By the way, we're so grateful to our parents, who have been amazingly helpful, taking Aaron and bringing us whatever we need. Thank you, unsung heroes!
I've gotta make this quick; my apologies for any typos or unfinished sentences that
So, we talked with the surgeon after, and here's what Dr. Grey's Anatomy said: He didn't see a hernia. After drawing out a picasso-looking diagram of the human body, he explained that there was no "hole" that he saw. Look up hernia on wikipedia, if you don't know exactly what it is. Instead of a hernia, he believes there's a weakness of the abdominal muscles due to nerve weakness/damage/suppression from her surgery or the tumor itself. So far, it's not dangerous to her, as there's no risk of any bowel or other stuff getting stuck and strangled in there and going toxic. Moving forward, the muscles could get stronger, could continue to weaken, or it could stay the same. So, with nothing to do, the doc just played paparazzi and just snapped pics and got out of her belly.
For us, it's frustrating, because we can see a bump poking out of her tiny little abdomen. It's also another thing with no clear resolution. Add it to the list. But we are glad that the surgeon didn't do any unnecessary surgery, and she did really well with sedation and is recovering fine. Pray for peace and wisdom and patience for us over the next few days– Immy is really cranky from sedation and medicine, a tree root attacked Tammy last night and snapped her ankle (ER trip, x-ray...sprain), and we're training a puppy who eats pacifiers. We have scans coming up in a month, and we're trying to figure out exactly what we want to happen then, and what we need to do leading up to it.
I'll update again soon when we have some time, but that's it for now. Thank you all for your prayers!
The last few months have been blessedly normal. In fact, we just got back from Immy's Make-A-Wish cruise, and the kids had a blast! I'll do a separate post for that soon with lots of photos.
Getting a princess makeover on the ship.
For today though, we have a quick request for prayer for Imm. This morning, she has surgery to repair a hernia in her lower abdomen. If we've spoken about it before, it's the "bump" we kept seeing.
So the surgeon is going to do a couple things this morning. First, he is going to repair the hernia, obviously. It's likely a result of either her surgeries or treatment from the last year, so he also wants to see if there are other weaknesses or damage inside that he could fix at the same time.
It looks like we'll be outpatient, but, depending on how much the surgeon sees and fixes, we could be admitted. Pray for success and no pain for our Tiny. We'll update when we're out!
Thank you for the prayers. Tiny did so well, and we had a great day. Scans showed no changes, so we are looking to move the scans out to every six months now. She is a Fun magnet in these waiting rooms, making friends. And I've never seen a happier little one, even in a hospital gown & an IV sticking out of her hand.
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.
