Weepy Wednesday

Here’s some real talk, on a random Wednesday, almost a year into a pandemic.

I’m weepy today. I don’t know why. I have been in a funk all afternoon and on the verge of tears.

So. I did a few things to try and take care of myself.

1) I sat down and made a proposed plan of Kiran’s re-entry (and mine) into the world. It is proposed because I don’t get to make the decision alone, but I feel good about what I came up with, timeline and all. I am so ready and cautiously optimistic the numbers will stay low.

2) I sat down with Kiran and watched Daniel Tiger while snuggling. This isn’t necessarily something new – we try to make time most days at 3:30 for good ole Daniel, but sometimes I don’t stop and sit and be.

3) I texted Eric and asked him to pick up Totino’s pizza because we are watching Ghostbusters tonight. If I could have made it happen on my brother’s birthday, I would have. But it seemed I needed to stop and honor and celebrate him. So we will tonight.

I haven’t written a lot lately for many reasons, but the truth is: This has been a really difficult season for me. Many factors play into the fact that this fall/winter has been one of the most challenging times in my life. I am working toward spring in my heart and in my mind. I haven’t lost hope. One step at a time, always.

One Step at a Time

This is proving to be an important motto in our world. One step at a time. It’s one of the things Kiran and his journey have taught me: I can’t overwhelm myself with all of the future what-ifs. I have to look at the place we are currently walking on this journey, instead of ten or even two steps ahead. (One step ahead is important for planning/anxiety reducing purposes, of course, but rarely two).

We had a conference call with Kiran’s oncologist yesterday to go over the results of his labs from a few weeks ago. Only one was elevated – substance P – but she feels it fits in with his flushing symptoms and could still be indicating the presence of a neuroendocrine tumor.

Don’t google that. Just don’t. Stay on this step with me.

Substance P is also something that can get elevated due to stress/emotional levels, like…getting blood drawn for labs. But of course, he has the flushing symptom happening as well, and that does not (as far as we can tell) correlate with change in stress/emotional levels.

Neuroendocrine tumors are apparently very difficult to diagnose. They are slow-growing tumors, most often found in the intestine, though sometimes in the neck or lungs. This is why we have been waiting for imaging, because oftentimes in the early stages, the tumor/lesion can be so small that it cannot be seen in a CT scan. They take months or even years to change in size, so since Kiran’s symptoms haven’t changed in a year, nothing is urgent at this time.

Our plan is to repeat the labs in two months (from the last lab draw), sometime in March. If we are still seeing elevated substance P or any other changes to other numbers, it may be time to discuss a CT scan for Kiran. This would be a scan going from neck to pelvis, to cover any of the areas a neuroendocrine tumor may be growing.

In the meantime, we have our usual symptoms to watch out for, and I continue to document anytime I notice the unilateral flushing. It is still so bizarre to me how quickly this went from probably nothing to a possible tumor – it seems Frey’s Syndrome has been ruled out, at least by the two specialists we have been working with to get answers (neurologist, oncologist). It’s too bad. I liked that diagnosis so much better than this potential one.

One step at a time. I am aware we may still find this is just something else about Kiran we can’t quite find an explanation for – it isn’t necessarily or for sure a neuroendocrine tumor. But it might be, which is why due diligence is also the name of our game.

One step at a time, with some planning for the next step. But this step? It’s big enough to wrap my head around and accept and handle. I don’t need to take on the next one, just yet. And Kiran doesn’t need me there either. He needs me right here, walking next to him.

Tuesday Thoughts

This is the last week before my spring semester starts. Instead of taking two classes, because it wouldn’t disrupt when I can apply for grad school, I opted to drop down to just one class. I am hopeful this will allow a little more balance in my world as I continue to juggle everything Covid and life has thrown my way.

I spent a decent amount of time on the phone yesterday with a scheduler trying to coordinate some upcoming appointments for Kiran in Iowa City. I am still waiting on a callback for one particular appointment which has been surprisingly difficult to get scheduled, but most of 2021’s appointments are now on the calendar.

I was surprised that he was due for his two year follow-up with genetics. I just can’t believe it has been two years since we decided to do the whole exome sequencing. I am excited to see if any more research has been done on his rare substitution.

Today, I have spent the majority of my day swallowing down panic over an abnormal lab result that came in this morning. I have already emailed and gotten a response from his oncologist, but the response was essentially she will need to “weigh in all the other results combined” before discussing what this result may mean with us.

The waiting is always the worst for me. Try as I might, I spiral to the deepest, darkest places. It must mean the worst thing, because that’s the card life has dealt me too many times. I googled it – I always do, even though my advice is nobody should ever do this – and it actually doesn’t make sense to me that this particular lab would be elevated for Kiran. So despite the panic and the dark, I am hopeful and see some light that perhaps the oncologist has a simple, non-tumor explanation for it, especially since all the other labs so far have come back normal.

We played – but didn’t win – the billion dollar lottery jackpot. If we had, in a heartbeat, I would just be Kiran’s mom full-time. It’s a full-time job, after all. I learn that every time I have a break from school, when life just doesn’t slow down. It fills in, with my favorite part of all my jobs – mother.

A Week and A Day

I generally write about our appointment days while sitting in the car on the way home afterwards. That is why it is very weird that our appointment day was one week and one day ago, and I still have yet to write about it.

I was exhausted afterwards. Kiran was exhausted afterwards. My dad was probably even exhausted afterwards, because it can’t be easy to entertain yourself for that long when you can’t go anywhere or do anything (and aren’t allowed into the hospital to go spend time eating, which is one of his things usually).

For those who were following along on facebook and wondering how the urine collection went…not well. The bag they gave me really didn’t work well – he pretty much got pee all around it with a tiny amount actually inside it. I had to put these cotton pads in his diaper – twice – throughout the time we spent at the hospital, making our very last thing of the day delivering urine to oncology. Weird.

We had one of the best experiences getting labs drawn that we have ever had. This is one of Kiran’s least favorite things. I requested the lidocaine with the j-tip application, because this is a trick we learned a couple years ago when he first got to experience it. And they got the needle in on the first try (he’s always a tough poke!) and were able to get all of the blood they needed quickly. The worst of it was Kiran gets mad when you make him hold his arm still that long. He grimaced a little with the initial pinch of the needle going in, but he didn’t yell or cry out or sweat or anything…but he did still need a mama hug immediately after.

The oncologist essentially got caught up on what we have been seeing, and it was decided if all the labs come back normal this time, we can wait six months before coming in again. At this point, all of the lab results that have come back are normal. This is a relief and not all that surprising – his symptoms remain stable, and no new ones have popped up. Still, I like normal numbers!

We saw a new ophthalmologist to make sure we were plugged into vision services (we are) and to have an extra person to help coordinate and make a plan for the accommodations Kiran may need, especially in the classroom with kindergarten approaching. At least that is my basic understanding of why Dr. D had us meet with him. He did one vision test on Kiran and deemed him to have “usable vision”. Not normal vision but usable vision. I feel we already knew that, but it’s nice that the test showed him that – and also, it was consistent with the test results Dr D has gotten in the past with this specific test.

Next came the eye appt with Dr D that really stretched us both to our limits of patience. He did a pretty good job of actually putting his chin and forehead on the contraption so Dr D could get a quick look into his eyes, so she decided we needed to try to get some photos of his eyes and then get a better look at his refraction (I think) – both of which required him to put his chin and forehead on contraptions. He doesn’t like to do this. It is not set up well for a child as big as he is to be in a mama’s lap to do this. He doesn’t lean forward well. He is strong. And stubborn. I was sweating by the end of it. That’s not even a joke.

But we got decent results for everything the doc wanted to see, and everything is looking as we know it does for him. The only bummer that came from this appointment is we had to start dilating drops again. Kiran was born with microcoria, which is a fancy way of saying he has small pupils. When we do the dilating drops every other day, we kinda train the muscles of the eye to bring his pupils to a larger resting place. At least that is how it worked last time – maybe 2 or 3 years ago – when we had to do them for a period of time. I am crossing my fingers they will do what we want them to in the six month period before we go for our follow-up. Kiran HATES eye drops. Like, I mean, pushed me away when I tried to hug him after they gave the dilating drops at the appointment…HATES. We are doing okay with it, but he gets really stiff, tries to push me away, and shuts his eyes tight tight tight. I have only given them three times so far because of the every other day routine, but I have already learned I just have to harden my heart and get it done as quickly as possible. It’s best for everyone. Not our favorite thing but just another one of those things we have to do.

Overall, as usual, Kiran was awesome. He wore his masks (We have to change them out every half hour because they get wet) like a pro and didn’t get too frustrated with me about them. He was brave and mostly cooperative and continues to show strength I can only begin to fathom. I am so proud to be his mama, all the time – but man, he makes me proud with how he handles these appointment days.

Fierce

Fierce: adjective: showing a heartfelt and powerful intensity.

I have decided this is my word for 2021. I am going to continue to approach my life with heartfelt and powerful intensity. This means loving fiercely. This means fighting for what is right fiercely. This means protecting my son fiercely.

I see living fiercely as the opposite of living apathetically.

There are many facets of what living fiercely must look like in this year. I know what I have ahead of me in certain areas of my life, and I will have to be a fierce fighter. But I have committed and will continue to commit to underlying all of the necessary fierce fighting with a fierce love – love for my son and what is best for him overall.

I am tired. 2020 wore on me, and turning the calendar page hasn’t changed much in my world. But I will be fierce in this way, too: choosing what is worth focusing on. Heartfelt and powerful intensity takes energy, and not everything is worth that. But as far as what is? I’m showing up for it this year.

Break

I am terrible at giving myself a break. Even when I do, I struggle with feeling guilty, especially when it comes to being Kiran’s mom. So much pressure is placed upon me for his needs, his skill progression, his happiness, his health. And I feel it, constantly.

We took the last two weeks completely off – Kiran is on school break, so I also canceled all his private therapies.

We have watched a lot of TV. We have snuggled up and read books and sang songs. We have played with toys and I only occasionally worry specifically about incorporating therapy skills practice while doing it. We still practice walking daily, but not always with the walker and not as a focused goal. Kiran has gone to bed late on more than one occasion.

Why is all of that so hard for me? Eric and I had an entire conversation last night, because I admitted I feel like a terrible mother these past few weeks. I am so worried he will have fallen behind with his skills taking these two weeks off. I have pushed ahead with the rest, because I also feel like he needed the break (and so did his mama). But I worry. I feel intense guilt. Did I mention I worry? I worry hard.

I also don’t look forward to getting back to his intense schedule next week.

Uncertainty

Being a parent to a little boy with extra needs perpetually involves making decisions you aren’t sure are the right ones. Particularly a boy like Kiran who doesn’t have a clear developmental trajectory wrapped up in a neat diagnosis. There is no way to know when his skills will plateau and how much progress he will make. For that reason, I have always felt paralyzed in moving forward with equipment for him.

I took a step a couple months ago – finally – and filled out an application to a local organization called Children at Home, in order to get a changing table that would work better for Kiran. His physical therapist encouraged me to ask for a height adjustable table, because he is able to do pivot transfers and should always maintain that skill, even if he doesn’t progress beyond that. (A pivot transfer – because I had to ask for clarification, too, would be like Kiran can stand up from his wheelchair and support some of his weight while turning around to sit down on the changing table). A height adjustable table would allow the table to go low enough for him to sit on and then could be raised to a position comfortable (and back-safe) for an adult to change him on.

These are expensive, and I had no idea if Children at Home could or would even be able to cover the full cost of something like this. But I knew it was worth a shot, and I knew I needed a different solution for Kiran soon. Getting up and down off the floor multiple times a day to change his diaper is starting to take its toll on my body, and it’s uncomfortable for Kiran to be up on his current changing table because he’s too tall for it.

When I found out the table was actually going to be covered in its entirety and had been ordered and was on its way, I had so many doubts. Did I choose the right features? Did I really need the big table at this point? Will Kiran even need this for more than just a few more years? Will he successfully potty-train at some point? Will he be able to stand during diaper changes at some point? Did I do the right thing in asking for this type of assistance?

The table was delivered today and is in Kiran’s room now – Kiran is currently clapping in his bed instead of napping because it’s been a weird schedule day. And I have to admit the relief and joy in seeing that table was huge. It sounds a bit strange because it’s weird for me to even type it – but this changing table will literally change our daily lives.

Until you are living in this world, I don’t think you realize all the pieces of equipment and the costs involved – you certainly don’t realize how little insurance (and even the waiver!) covers. Insurance would have never agreed to a height adjustable table for Kiran, because in this instance, it isn’t so much a need for Kiran that the height adjusts – it is more a caregiver’s need, and insurance doesn’t care about that. The waiver Kiran is currently on only covers home and vehicle modifications – it is possible we could have figured out how to get some sort of built in changing table covered as a home modification, but that would have been more difficult.

I am beyond thankful that organizations like Children at Home exist, and that there are people who care about caregivers and those they care for – and who care about keeping children at home where they belong if at all possible. I am thankful my back will hurt less, Kiran will feel more comfortable during diaper changes, and this is a device that will grow with him for many years.

And if he does outgrow the need for this, in one way or another, I know I will be able to pass it on to someone else who has a need. I am so thankful today.

Oncology

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.

MRI; Next Steps

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.