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.