Another long MRI day

After changing into her gown

Today was Madeleine’s 2nd post-surgery MRI.

 

Playing with daddy's phone to pass the time.

The actual MRI was uneventful. We were taken back on time and she was taken to the bed for anesthesia on time. She didn’t get overly hungry (probably because I woke up at 2:15am to bring her down for a meal since 2:30 was her cut-off for food). She woke up relatively normally and drank milk and was fine. So then we got to leave the MRI area – and had 3 hours to kill until our hem-onc appointment.

Rockin' out to Lynyrd Skynyrd with daddy

First, she had some brunch (only because it was 11am and she didn’t have any breakfast). She thoroughly enjoyed her grilled cheese and orange slices. Then we went up to PT and scheduled her next appointment for next week. And then we went to hem-onc to wait. This included some trips to Starbucks and the bathroom and little “walking” expeditions down the hall for M to move around and not just have to sit in her stroller all day.

Post MRI, still out.

Such a little angel

Her height and weight are doing awesome. She’s gained about a pound since last month and is currently at 23.5 pounds. She’s also gained another inch of height, so she is at 31.5″ now!!

"ooooooooo" LOL! We were working on different alphabet sounds.

Which leads us into the doctor’s appointment. First we reviewed all of her movement, new skills, talking, etc. Cori was quite pleased with all of that. And then on to the MRI reading. Cori started with “Now, don’t kill me.” Alarm bells!!!WHAT?!?! Don’t kill you?! You’d better tell me right now what you’re talking about or I just might! Kidding! Kind of.

MRI results were not good, but not bad, either. What does that mean? I’m still trying to figure it out, myself!

Good news: There is no measurable growth of the tumor.

Bad news: Even though there is no measurable growth of the tumor, it appears to be bulging slightly in places where it was not before.

Good news: Dr. Park said she has seen this before, and it turned out to be nothing. Sometimes the places they do the cross sections in the MRI aren’t quite the same and can cause this effect.

Bad news: It means her tumor could be growing again.

Good news: They are going to monitor her even closer, having another MRI sooner than the 3 months they would have normally.

Bad news: There isn’t much point in doing that MRI any sooner than 6 weeks, because there won’t be enough noticeable change any sooner than that.

Good news: They did run the neuroblastoma blood test, which tests the NB markers in her blood. We will have results of that later this week.

Bad news: The markers don’t always go up, even if the tumor is growing, so if there is no change we still will not have any sort of answers.

Good news: If it is nothing after the next MRI, we can continue with regular maintenance.

Bad news: If it is tumor growth after the next MRI, they will have to evaluate options. Including chemo, surgery and neuro surgery.

As you can see read, today was very up and down in terms of emotions. Alex and I both left completely emotionally depleted after having had such a good stretch of time with no bad news. They kept saying that this was not for sure a bad thing, that they just didn’t know and that they’d rather be conservative than just not doing anything. Great, but still.

Playing with the x-ray light wall while we waited. This was a super fun game haha!

I will say, I have been having really scary feelings about this appointment today before it happened. I finally gave in and called Cori this weekend and she reassured me that her tumor was more than likely just fine and no, she didn’t have a tumor somewhere else and that we’d know everything for sure on Monday (today). The moment Cori said “Don’t kill me” my heart sank and I had probably the 2nd most gut wrenching feeling I’ve ever had in my life. The first being the night that the ER doctors told us she had cancer. This limbo is so difficult and I’m sure I’ll be watching her movement like a hawk for the next 6 weeks. In fact, I am going to talk to her physical therapist about scheduling more regular PT until that next scan is done. Just in case there is any weakness, Leslie will see it before I do.

All in all, a tough day for us. Please keep her in your thoughts that this tumor is not growing and it was just a weird MRI today. 😦

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6 Comments

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6 responses to “Another long MRI day

  1. Awww 😦 keeping fingers crossed for the blood results. This is what the follow up MRI s are for so I’m sure they’ll do everything they can to make sure she’s a-ok. That oooo photo looks like a fist pump haha!

  2. grandma

    Love you all-good thoughts and prayers. Don’t strain your eyes looking for something wrong with her-hopefully it would just be a waste of time and you might miss some joy! xo xo j

  3. sending love and prayers to you all! M is looking SUPER adorable, as usual!

  4. I just wanted to let you know that we have been through the “maybe the tumor is growing, maybe it’s just a different cross section that was measured during the MRI” result SO many times. Every time it nearly kills me, and it turns out to be nothing. The VMA/HVA results can also fluctuate a lot and still be within the standard deviation, so try not to worry (I know, fat chance, right?!) too much if they are a tad higher than last time. The fact that she is now walking (!!!) means that she is doing great!

  5. Pingback: MRI Day | Tiny Baby Fingers & Tiny Baby Toes…

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