You know how you have moments where suddenly your whole perspective changes? I can remember very specifically a few of those in my life – most notably the four times I’ve seen positive pregnancy tests, the moment I said ‘I do’ on my wedding day, when I saw each of the girls’ scrunched up baby faces for the very first time…
On Wednesday I had another one of those moments, and I’m still working through processing it. I mean, it’s not that the whole ‘c’ word hasn’t been at the back of my mind – really ever since the first time I looked at that ugly growth on Hannah’s knee. But up until now, it’s only been a possibility and one that everyone’s been careful to avoid talking about.
Not that I’m complaining about finally being further down the road to answers. It’s good to have everything out there on the table and be addressing the giant elephant that’s been in the room. Yes, our child had a malignant, cancerous tumor. Fine. It’s been removed and is gone. Now we just have to deal with everything that this fact entails.
So Wednesday’s appointment was a strange one in that neither Ron or I really had any idea of what exactly was going to happen. We knew we were going to see an oncologist for ‘further follow-up’, but what that meant, we weren’t sure.
Arriving back at Helen DeVos Children’s Hospital was kind of like déjà vu from Hannah’s surgery day. We knew exactly where to park, how to get to the bridge over from the parking ramp to the hospital proper, and everything looked exactly the same. This time we headed up to the 10th floor though – the Oncology/Hematology Center.
We got checked in and they took Hannah’s vitals. She’s exactly 4’ 8-1/2” tall and weighs 80 pounds. They got us settled in an exam room, complete with Hannah’s name written on the dry-erase board on the wall. Everything was clean and bright and kid-sized. The nurse stopped in and made sure we knew that we were welcome to check out the snack station while we were waiting, so Hannah and I took a walk down there – and we remedied something that Hannah had lamented on after her surgery. After hearing that the hospital has slushy bars, she’d never had the chance to have one that day.
Not so on this day – she was soon ensconced back in the exam room with a bright blue slushy and a snack package of cookies. I opted for hot chocolate.
After a long-enough wait that Hannah had almost finished her slushy, one of the doctors came in. We described everything that had already been done to this point and he took a complete medical history. He also did a complete physical exam on Hannah, focusing especially on checking over her lymph nodes, glands and of course the surgical site on her right knee. A little while later, we were joined by a second doctor – together they are the team that will focus on whatever care she needs.
I’m going to go into a lot of detail here – mainly for my own purposes of having a good record about this whole experience. I apologize for the lengthy post – feel free to skip to the bottom if you’d like, especially since I’ll probably repeat things I’ve already covered in previous posts. And I’m also probably going to butcher medical terms and explanations – I’m going solely from memory here and there was a lot to process. Sorry!
The doctors explained that they are a team of a pediatric oncology attending and a pediatric oncology fellow who work together to bring both the experience and the fresh perspective. We felt comfortable with both of them and they were very thorough and honest in their explanations. Hannah was there for this discussion and the doctors specifically told her that they will never keep anything from her and will be entirely honest with her at all times. They did have her go down to the activity center for a little while at the end so we could ask any questions we wanted to.
The three pathology reports on the tumor all agree that it’s consistent with an infantile hemangiopericytoma. Obviously the tumor has been removed at this point and the surgeon is very confident that he got a good margin of healthy tissue around it. However, the final pathology report does have one discrepancy that these doctors explained to us. When a tumor like this one is processed for samples for testing, the tumor is sliced and the slices are prepared on slides. There are three portions on each slide – the tumor, the healthy tissue beyond it and then an ink mark that is made to distinguish the edge of the sample. On one of Hannah’s samples, there is no ink line – and the tumor goes right up to the edge of the sample. The doctor’s educated guess is that the tumor had likely split or broken in that area, so that this portion was probably an interior piece of the tumor, not an outside edge. That would explain why there was no healthy tissue margin and no ink. But – because of this, they cannot say with 100% certainty (not that anything’s ever 100% in medicine anyway, but still…) that the entire tumor was contained within what was removed from Hannah’s knee.
The doctors are recommending three further tests at this point, to make sure that there are no other malignancies. They are going to do 1) an MRI of her entire right leg, 2) a CT scan of her from neck to pelvis, and 3) a bone scan. If everything comes back clear on these, they’ll do repeat tests (not as extensive) in 3 months, and then will continue to do repeat tests for a period of 3 years, getting progressively further apart. And obviously we’ll continue to watch her knee for any signs of the tumor growing back. If it does grow back, it would almost certainly do so in the same spot. The concern though is to make sure that nothing has spread into either her lungs, her lymph nodes or her bones.
If something does show up on these initial scans (or any of the future ones), what is done will depend on what they find. If the tumor reoccurs at the same spot, they would surgically remove it again and then do radiation therapy at that location. If it’s spread elsewhere, then they would do chemotherapy and possible radiation as well, depending on where it spread to.
Basically this tumor was a soft tissue sarcoma – a malignancy. At this point, Ron and I specifically asked about the ‘c’ word – cancer. Because we had previously asked the surgeon whether the tumor was benign or malignant and he had told us it was benign. At Hannah’s follow-up appointment with the dermatologist (for her facial sores), that doctor had mentioned that the pathology reports were unclear about whether or not it was malignant or benign.
According to the oncologists, this type of tumor is by definition a malignant one. We’re not sure why nobody had come right out and told us this before, but it’s good to have everything out there on the table so we can begin to process and deal with it. Yes, this was a cancerous tumor. We were fortunate in several ways though – these tumors can often appear deeper in the soft tissue so aren’t as easily found until they get much larger. This one was right at the edge of the skin and was visibly apparent.
Does that mean that Hannah ‘has’ cancer? At this point Ron and I are using the past tense to refer to it. She HAD a cancerous tumor. Does she HAVE cancer? That’s what these scans will tell us. Obviously we’re hoping that there will be nothing, but I guess we won’t totally be able to breathe easily until the next three years have passed with scans that are all clear. And if something does show up – whether now or at some point in the future, we’ll focus on what to do and how to handle things then.
Hannah herself is doing fine. She’s in no pain and never has been. The physical exam was very encouraging and the doctors told her specifically that they are not worried about her at this point. She drank 2 blue slushies that morning and started a bead friendship bracelet in the activity center. I didn’t think she was going to want to leave, lol! All she asked when we told her we’d have to come back for more tests is whether she can have another slushy then.
We’ve talked to her about everything, including explaining what malignant means and using the word ‘cancer’. We want her to understand what’s going on, but not frighten her. I used Ron’s thyroid cancer as an example for her – he had cancer, they removed his tumor (and his thyroid) and he had one treatment and then has been absolutely fine ever since. Most likely, this will be the same for her – she had a cancerous tumor, it was removed. They’ll do some tests and she’ll likely be fine ever afterward. She had no questions and hasn’t seemed overly concerned. We made sure she knows she can ask us anything at any time. I kind of think that she likes all of this extra attention though, especially having Ron and I to herself for all of these appointments.
I feel cautiously optimistic – but still slightly worried about what the scans will find, of course. We’ll know soon – the MRI is scheduled for tomorrow (Sunday) afternoon and we’ll be at the hospital most of the day on Monday for the CT and bone scan. We should have the results within a day or two of each test. After thinking that everything was done and over with, it’s been a process to suddenly not only have to deal with more tests, but now knowing for sure that this was cancer. Ron feels blindsided – me not so much, probably because I’d done more research on this type of tumor as well and had seen the word sarcoma used in conjunction with it. Although, there’s not a lot out there online about it, and most of what you do find deals with tumors in the brain or lungs, so not really comparable to this situation. It is a really rare tumor. Trust our kid to grow weird things out of nowhere.
There’s no specific genetic link – we did have that conversation with the doctors as well. But they are curious about the fact of Ron’s thyroid cancer and that both his mom and grandmother had their thyroids removed at an early age as well, so are going to research an possible links there further. There’s no evidence of an environmental or other type of link as a cause – it’s just one of those things that happens and nobody really knows why.
So now we do the tests and we wait – again. But at least at the end of this wait we’ll have a full answer to the question of whether or not there’s anything to worry about at this point in time. It’s good to have some answers and to know more are forthcoming.
I think that’s everything up-to-date. We’ve had so much support from family and friends when Ron and I have posted updates on Facebook and on my blog posts here, as well as from my fellow bloggers in the TravelingMom network. We are so blessed to have such amazing people in our lives and we’re incredibly thankful.