Eye surgery, MRI, MIBG Scan and results! PHEW!

Let’s start off on this medical whirl wind with Madeleine’s eye surgery. She had surgery August 29th (sorry for the delayed update!). We knew this one would be pretty uneventful, so we went into it not super worried. It was a quick outpatient surgery to un-clog her tear ducts so she would stop getting eye infections. We arrived early in the morning, and Madeleine spent the time climbing all over the furniture, like the little monkey that she is. ๐Ÿ™‚

โค this one!!

Then we got called back to the pre-op area. We were late due to construction traffic, so they rushed us through pre-op, which was nice. Normally it takes for.ev.er. Quick change for Madeleine, hugs from daddy and mommy got to go back with her for the initial anesthesia.

Hanging out, waiting for her robe to change in to.

This is a girl who adores her daddy. It's the sweetest!

The procedure was quick, and we were back to meet with the doctor in about 45 minutes. She explained that everything went well and they cleared her tear duct, widened the one that drains down her nose and inserted a stent to keep it from closing up again before it heals. And then the doctor explained that she discovered some rather odd anatomy that our daughter has. **sigh** ย If I hear one more doctor tell me that Madeleine has something unique, medically, I might just burst into laughter. I’m not kidding! Every time something with her happens, “oh this is so abnormal! How unique!” And there I am, trying not to roll my eyes at them.

Dr's diagram.

Basically, there are two tear ducts from the inside of the eye. They collect into a little tear pouch and then drain down the tear duct that goes down the nose. For whatever reason (we’re blaming daddy since he had eye drainage issues as a 2 year old, too! Even daddy is blaming himself. haha) Madeleine’s top tear duct does not connect to the little tear pouch. It’s not a matter of clearing a blockage – the duct just comes to a dead end and doesn’t connect. It’s a good thing that 2/3 of a person’s tears drain out of the bottom duct – makes sense with gravity, no? – so we haven’t noticed any problems since the surgery.

She had a slight bloody nose that progressively got better for about a week. She also had a pretty bloodshot eye for about a week after surgery. However, all appears to be good now!

Then, we had her MRI and MIBG scans last Friday. First, we started with having to force her to drink the SSKI fluid three times a day to protect her thyroid from the MIBG tracer. That was a chore and a half. Then, on Thursday we went in for the blood draw and the tracer.

Waiting and watching Mickey!

She did a pretty good job waiting, despite the fact that they were running over an hour late and she hadn’t had a nap. I hate radiology. They are literally never on time. In fact, I submitted a comments card voicing my complaint about this after the numerous times we have gone and they’ve been significantly late. Even at 9 am! What on earth??? But I digress…

She was miserable by the time they gave her the IV. ๐Ÿ˜ฆ Poor thing screamed and fussed and was really upset about it. She was even more upset when they taped the IV tube to her arm while we waited for the nuclear med person to come give her the tracer. She kept trying to rip it out, and when I wouldn’t let her she got really ticked. Poor thing!

The next day we were back for her MRI. I was on my own for this one, since Alex is out of PTO for right now. Whoever thought only having 1 time all week ย for the MIBG scans and making it for 12:15 in the afternoon was smart is clearly an idiot. If they knew that you were dealing with a 2 year old that’d been begging for a “sack” (snack) since 9 am, they probably wouldn’t do that. So, I already had a pretty not-happy little girl, upon arrival. In fact, when we got back into the room, she started screaming and ran behind the crib and refused to come out. While still screaming. ๐Ÿ˜ฆ She must have remembered the appointment from the day before and getting poked. Broke my heart. So we snuggled a bit and I was lucky to find Mickey on the TV.

See how red her eyes are? ๐Ÿ˜ฆ

Oooh! What's outside?!

The MRI and MIBG scans took 2 and a half hours. And I was trying to work via phone e-mail while we waited for her to go back because work is crazy right now. So, I broke out the laptop in the cafeteria to pass the time while she was actually back there. Much easier!

They’d predicted 2 hours for the scans, so when it was taking longer I was naturally getting nervous. But everything went ok. She came back to the recovery area asleep, still. Of course, with nothing else to do but wait, I took some adorable photos of her.

Isn’t she sweet? ๐Ÿ˜€

Finally, she woke up and it was zero to 60! She practically jumped up out of the crib. She gobbled down some goldfish crackers, 2 things of juice and was awake enough to head home.

See how drugged up she was at first?

Chewing!

Sleepy!

On a quick side note, she went with me to pick up a quick dinner at Toni Maroni’s pizza and since we had to wait, they gave her a ball of pizza dough to play with. She thought that was fun! And look how diva-licious she is with her sunglasses!!! Her daddy bought those for her, and she loves them. ๐Ÿ™‚

Poke! Poke!

Oooh! What is this?!

Which brings us to today. Today was her follow-up with Dr. Park at Hem-Onc. ย Alex took her by himself (thus, no photos from me) because I have taken off too much time from work lately and figured I would just call in to the appointment. After a great visit with physical therapy (she doesn’t need to see her for another 6 months!!) I didn’t figure it’d be big news at hem-onc, either. But it was.

It seems as though the tumor has grown. However, the good news is that there was no additional uptake on the MIBG scan, which measures different things than the MRI. But the size of the tumor is somewhere in the realm of 20% larger in mass. Because there is no additional uptake on the MIBG, Dr. Park thinks that the increase in size is may simply be an increase in cell size as the tumor becomes benign – basically. But she doesn’t want to risk that the neuroblastoma could be growing, so she has e-mails in to the surgeons to discuss which surgery option is best.

Dr. Park is thinking that the full thoracic surgery where they open Madeleine’s chest is the best, but she wants the opinion of the surgeons. She would like to get as much tumor out as possible to test. The really good news is that there isn’t any impact showing on her spine, so that is great. That means no nerve or spinal cord damage.

The timeline for surgery is 2-3 weeks. I asked for early October because things are so insane with work right now, I just don’t see how I can take a full week off to be at the hospital with her if she has the larger surgery. Dr. Park is going to check with scheduling to see what’s possible. That’d put us on the week of October 3rd.

One major question for the surgeons is why so much tumor was left after the last surgery. We were told post-op that they got 95% of it, but there is no way that is the case. We want to be sure she’s not subjected to surgery after surgery. Heck, she’s already had more surgeries than Alex and myself combined!! And he’s had a hernia repair and neck fusion in the last few years. Anyway, I’m not pleased about the results of the last surgery, so I have some reassurance needed before this one.

I’ll do my best to keep the blog updated as I know more, but be patient with me. I don’t have as much time as I did before, when I wasn’t working.

Keep our little girl in your thoughts! She’s got another doozy of a surgery ahead of her.

And, on a lighter note – perhaps we can keep her entertained in the hospital with bubbles!! They are one of her favorite things these days ๐Ÿ™‚

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4 Comments

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4 responses to “Eye surgery, MRI, MIBG Scan and results! PHEW!

  1. Thanks so much for sharing your story. There are so many similarities to our story that it really is strange. Our Madeleine went through the same thing with the tumor growing before it settled down to being in the stable state that it is now. She ended up having another surgery after that growth as well. I know how difficult it is though, hearing that the tumor is growing. The NB specialists that we saw in LA said that the growth was totally normal and even expected as the tumor begins to mature. Facing another surgery is tough, my thoughts will be with you during the next few weeks!

  2. Kelly

    Love you guys. I also love Amber’s reassuring reply. Thank you, Amber, for sharing.

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