And the roller coaster ride continues…

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IMG_6918I swear that the ups and downs of this whole process are going to give me an ulcer – or something. I guess that’s just life though – it is what it is.

Every time we think that we’re done worrying about Hannah’s knee tumor, something else pops up. First, it was shaved off by the dermatologist and we think – great, it’s gone and that’s it. Then we find out that she needs surgery to remove the rest of it. Ok. The surgery goes well, she got her stitches out on Monday, everything’s healing well – great!


Then we got a call from the surgeon on Wednesday afternoon.

First, let me explain exactly what the pathologist reports found on the tumor. Hannah’s surgeon gave us a call last Tuesday to explain. The reports state that it’s ‘most consistent with’…

Infantile Hemangiopericytoma.

Yeah, try saying that 5 times fast! It took me several tries to pronounce it at all. And when I took Becca into our pediatrician for her well-child checkup last week, our doctor said she’d never even heard of it.

Which seems to be part of the reason for the roller-coaster ride – it’s an extremely rare type of tumor, so there’s no specific course of treatment. And opinions seem to be mixed on whether it’s actually benign or malignant. Ron and I listened together on speaker to Hannah’s surgeon’s explanation and each of us came away from the conversation with a totally different opinion of what he meant.

There have been 3 different pathology reports on this tumor. First, the original shave biopsy done by the dermatologist. Which was sent to a dermatologic lab – who referred it to another pathologist, Dr. Weiss at Emory University for a second opinion. She is apparently THE authority on soft tissue tumors (having literally written the book of that name), so that’s definitely reassuring. Then, after the remainder of the tumor was removed via surgery, a local pathologist did a third report – which I have a copy of. She agreed with the previous findings – so after three concurring opinions, at least we can be glad that everyone agrees on what the tumor is.

The issue now seems to be that hemangiopericytomas can be benign – or they may not. Basically it’s an extremely rare, fast-growing tumor. And it’s the ‘fast-growing’ part that gets concerning. Because malignant tumors are fast-growing by nature. So even though no cancer cells were specifically found in this tumor, the fact that it shows such quick growth is maybe an issue.

Hannah’s surgeon was very careful to reassure us that there’s most likely no cause for concern. The entire tumor was removed and he’s confident that he got all of it. His recommendation was for us to watch the area over the next year or two to see if anything grows back, but not to worry about it otherwise. Since Ron and I had come away from the phone conversation with such different opinions (Ron took away that the tumor was entirely benign, and I heard that it was most likely benign but they weren’t totally sure), we asked at Hannah’s follow-up appointment. The surgeon was very definitely of the opinion that the tumor is entirely benign, so that was good to hear, and we were glad that this whole thing seemed to be over. Her incision is healing well and she’s back to full activity level with no restrictions.

That brings me back to Wednesday’s phone call. The surgeon (who I am extremely impressed with), called to let us know that even though he’s confident in his recommendation for follow-up, he wanted to be thorough and get a second opinion from the oncology and hematology practice at the local children’s hospital as well. He gave Hannah’s file to them and just wanted to give us a heads-up in case they decided any further testing or imaging was necessary.

This morning I got a call from the Pediatric Hematology and Oncology practice. They reviewed Hannah’s case at their weekly tumor board meeting and would like to see her for further follow-up.

Back on the roller coaster of emotions…

Again, it’s likely that this is nothing. Everybody’s being very careful to be thorough so that we know for sure – and that’s a very good thing. We WANT them to be thorough so we know once and for all whether there’s more to this thing or not. It’s just that this means more days of waiting until another appointment, which of course means more days of worrying about that (probably small) chance that there IS more to this thing.

Like I said, it’s been a roller coaster of emotions – and we’re still riding.

I may have jinxed things by assuring Hannah’s teacher that we were done taking her out of school for appointments finally. Now I get to eat those words and let her teacher know we’ll be bringing her in late next Wednesday morning. I have no idea what they’re going to do at this appointment, so I have no idea how much of the day she’ll miss.

We’re hoping (and praying) that this is just everyone being extra thorough – and everything will turn out to be fine. But either way, it’ll be good to know for sure.