I am going to start with the best thing that came out of today’s appointment: Unless something comes up, we do not have to make any trips to Iowa City until mid-January. I love having breaks around the holidays.

Kiran’s lab results have been popping up on his mychart over the past couple weeks. His seratonin is elevated. Today, I learned it is not elevated to a level that is concerning and is still in a range seen in a lot of people. But the day that result came up on his chart, I, of course, went to google for more information.

And guess what? What I found out in my google sleuthing is what they are suspicious of with his flushing symptom: Neuroendocrine (or carcinoid) tumor.

But his lab results and symptoms (or lack thereof) are not concerning enough at this point to do much more than monitor. If we did imaging right now, even if he has one of these tumors, it may be too small to detect. They are very slow-growing tumors. There is a treatment for them – it’s more a chronic disease management type treatment, not chemotherapy.

…I don’t attend to those types of details until that’s the path we are on, and we aren’t there yet…

The doctor – who I really liked – also made it clear we may not find a cause for this flushing. It could be psychological or behavioral.

The plan is to monitor for now. Watch for a change in symptoms or additional symptoms. Repeat labs (with a few more added) in January and again in April. If something changes with his symptoms or his numbers, we will move forward with imaging. If six months goes by and nothing changes, but we are still seeing the flushing … we will move forward with imaging.

It is hard that we didn’t really learn anything today. It is hard knowing a tumor is even a concern. And knowing we may have to wait six months to know whether or not one is present.

It’s hard going to the eleventh floor, to oncology. Really, everything about this is hard. I prefer immediate answers. But I like that we have a plan, and I really appreciated this doctor’s thoroughness and demeanor.

This road – man – I don’t even pretend to know where it’s taking us anymore. 2020 has put some bumps and twists on our path for sure. But our people are still ours. And it all matters, this journey we take together.

Dr. M, Kiran’s neurologist, called this afternoon. Kiran didn’t even have a neurologist on his team until earlier this year, when we saw her for the unilateral redness symptom that is taking us on this current journey. We had seen her only once before, after Kiran received his first MRI two and a half years ago, and it was determined we didn’t need a neurologist on his already extensive medical team. I hold out hope that by the time we complete this journey, we can say the same thing. Nothing against Dr. M, of course.

The good news first: His brain MRI was stable and looked as it should. Nothing concerning compared to his baseline MRI. Some bad news: Dr. M made a mistake and failed to order the neck MRI that is important imaging as well to investigate this rare symptom. She apologized extensively. Because she was so focused in not making a mistake about the rare labs oncology had recommended (WHY is everything with this child “rare”?), she missed her mistake with the MRI order.

This is upsetting mainly because Kiran has to be sedated for an MRI. Though he always does well with anesthesia and we have no concerns, there is risk involved anytime it happens. And another trip, another appointment, another test….but it gets less upsetting as the conversation goes on.

None of the lab results are back yet. These labs had to be sent away to be processed, and they generally take 2-3 weeks for results to get back. Dr. M at this point is saying she really feels the neck MRI is necessary and important imaging, and she mentions that if the labs come back abnormal, she will reach out to oncology to see if any further tests need to be done so we can coordinate.

At this point, I speak up and ask that she confer with oncology even if the lab results are normal, because I want to make sure ANY testing ANYONE wants done to explore this symptom be done under only ONE more sedation. That is when she asks about the frequency of his symptoms.

When Kiran saw her in September, his symptoms had decreased quite a bit. I wasn’t noticing them very often at all, and I was relieved (and so was she). But, according to my notes, as of Sept. 28th, I have started seeing it more. I have 9 times recorded in the last month.

And so, her recommendation: Kiran needs to be seen in the oncology clinic.

Every time I have said or typed that in the last two hours since getting off the phone with her, I have had to blink back tears. It is not that anything is more concerning than it’s been or that I am super fearful that this could be a major issue – This entire thing, still, could absolutely just be a benign issue that he just has to live with – but something about a doctor telling you that your child should be seen in oncology….

We are doing due diligence. She kept reminding us this is a rare condition/symptom. We have to be sure we aren’t missing something important. Something more. We are going through all of this to hopefully get to peace of mind.

It’s what I keep telling myself anyway.

I got a second phone call from Dr. M several minutes after the first one. She had already consulted with the neuro-oncologist who confirmed Kiran can be added to her schedule sometime the week of Nov. 16th. She also said she will likely want to order a CT scan, so that would require sedation anyway and it can be coordinated with the neck MRI Dr. M still needs. That made me feel a little better about that situation but still – honestly – I’m annoyed by it.

Mostly, tonight, I’m just overwhelmed and emotional. This week was already feeling emotional and hard, for many reasons. I just have to hope and pray that this will all be the journey to peace of mind.

It’s a long road ahead, but we have to take one step at a time. Together.