Rollercoasters are sooooo overrated! Give me the little ladybug ride that just goes round and round in a simple circle and I'll be happy forever....truly happy.
Last week at our followup with Dr. Nelson (ENT), he told me that while Hannah's tube was removed, he also removed a very small polyp that had formed next to the tube. He sent the polyp to pathology just to be safe. The polyp stained positive for langerhans cells. I contacted Hannah's oncologist who wanted the remaining sample and slides sent to Children's Memorial for their pathologist to review. I got the call today from Dr. Weinstein that the pathologists at Children's concur with the local pathologist.
What does this mean? Well, nobody really knows for sure. We're talking about a rare disease with very little research and very little understanding. UGGHHHH!!
Here's what I do know per Dr. Nelson (ENT). The size of the polyp was very small (1mm). The part of the polyp that exhibited langerhans cells was less than 5%. All this is good.
Here's what I know from my discussion with Dr. Weinstein (oncologist). Does this finding mean that the LCH is trying to make a comeback? Only time will tell, but we're hoping not. Does this mean that Hannah's body is trying to keep the histiocytosis at bay (considering the small amount of cells)? Possibly. Does it mean that her blood is smarter now and handling "problems" without sending lots of langerhans cells there? Possibly. Does it mean that something could be brewing for a reactivation at some point? Possibly. I asked Dr. Weinstein if she's glad we didn't remove the port yet. She said that she would have no regrets had we removed it. She said we have to go under the known assumption....Hannah's last scan was stable. Dr. Weinstein is going to check with Dr. McClain (top doc in the country - Texas). She does not think that he'll say, "hey you've got a 1mm lesion that shows active histiocytosis, let's put her back on chemo." She just doesn't think he'll suggest that at all based on this newest info, but she wants to double-check with him none-the-less. And we are grateful for her doing that.
In the meantime, Hannah's ear has also developed a little hole in the eardrum where the tube used to be. I'm not sure what's going on in there. It was healed over when we went for the followup last Thursday. Then yesterday when I looked in there with my handy-dandy otoscope, I noticed a small hole about the size of the tube opening. I called today to see if Dr. Nelson wanted to see her before the already scheduled Thursday appt. He wants us to stop using the eardrops he had prescribed and to keep the Thursday appt. It will probably mean that Hannah will need her earplug and headband for our annual trip to the beach in early June. Big bummer. I thought she'd take the news badly when I mentioned the possibility to her, but in true Hannah fashion, she just said "oh" and went on playing.
She's amazing and teaches ME new things everyday. Today, I was explaining to Jim what Dr. Weinstein had said on the phone. We were in his upstairs office for a while and I was trying to make sense of it all with him. In walks Hannah, dressed in nothing but her underwear and a cape she had made out of a big piece of bubble-wrap. Brought me right back to reality and what's truly important....making life fun as often as possible.
I'll post again after news about the "hole" on Thursday and after we hear about Dr. McClain's opinion.
So once again, I'm thanking you all in advance for your prayers and positive thoughts. Didn't think we'd need more of them so soon. Was hoping to coast through summer before you had to read another one of my long posts about doctors. We appreciate your thoughts and prayers so much!
And if I could be so bold as to ask for some more prayers? Hannah's Aunt Mary is having reconstructive surgery on Friday (from breast cancer) and Hannah's Grandpa (Jim's Dad) is having open-heart surgery to replace one (maybe 2) valves next Tueday. I'm certain they would be very happy to have the extra prayers, if possible. Thank you so much!!
