MRI #2 Update

We got to see the post-op MRI results with the surgeon.  Imogen has always liked him the best, because he kisses her on the head.  He showed us a comparison between the first and second MRI.  

The great news is that he was able to get a lot out, and it's no longer leaning on the spinal cord.  There are still areas near the kidneys that aren't in his wheelhouse, so they're still in here.  He said that when the tumor was in there, it was pushing in such a way that was the equivalent of someone having 5 or 6 slipped discs at the same time.  Anyone who's had one knows that's no small thing.

So, now we're waiting for some physical therapy and for the pathology report at the end of the week. 

She's feeling a lot better. 

Up and about

Well we've had some wonderful visitors today, and Imogen has returned. She has joked, been a kitty cat at the pet store, and started eating again.

Latest update: catheter is out, and we've gotten Imm out of the bed. We wheeled her into the playroom, and she sat up by herself and played with moon dough for 15 min before being DONE. 

We talked to pathology again, and they don't expect to have conclusive results until maybe Friday. 

Overall, the post-op has been quick but tough on me and Tam, so it's nice to see Imogen being goofy again. Next up, we'll hear from the surgeon on the post-op MRI results. 

Tuesday 8/20

We had a much better night last night. Imogen (and mom) slept very well for long periods.

They're beginning to ween her off the morphine now that's it's been over 36 hours since the surgery. Her bandages look great. 

A couple of updates:

1. Surgeon came by and said he got a look at the MRI results. He got a big chunk out, so there shouldn't be much pressure on the spine. However, it's still wrapped around the nerves, so time will tell if she'll still have difficulty walking. "Time will tell," he says. 

He is gone most of the day, but he'll be back late afternoon to show us the images. 

2. Speaking of that, she's supposed to have physical therapy today to help get her moving about. Pray she's not scared. 

3. Also pray that Imogen doesn't develop any sort of issues from bed rest. She has a pretty bad cough that could develop into pneumonia if she doesn't start moving around. 

4. She slept great, but has also had a pretty high fever come and go. Pray it stays down and she can be comfy.  

5. Lastly, we should have the report from the pathologist today, and we'll know if parts of the tumor are malignant. 

August 19: It's benign so far, and I'm happy maybe?

Just talked with Hematology/Oncology (or "HemOnc"; they love jargon at hospitals) folks again.  The section that was removed and frozen looks to be completely benign.  I'm choosing to rejoice in that one, folks.  A couple of things:

1. Pathology will be studying every piece the surgeon got out.  If they find any malignancy in the pieces, they'll recommend chemo. We should know more tomorrow.

2. Remember, the oncologists would actually prefer some malignancy, because they want something that will respond and shrink to treatment. You decide what you'd be praying for.


We'll know more in the morning.  Imogen is doing really well tonight.  Her fever spiked up again to over 103, but it came back down with some medicine.  Her fevers aren't anything to worry about yet, says our new nurse Lisa, who is splendid.  Could be a normal reaction to the surgery or UTI-related. Everything still looks perfect.

In case anyone was wondering if she has her personality, she's still hilarious and incredibly sweet.  Depending on the hour–and, likely, who's less available at the moment– Imogen demands prefers one of us over the other.  Fortunately, tonight's my night.  She's wiggling as she watches Caillou, and keeps showing me how good she is at moving her head.  And mom is getting some much needed rest. My favorite interaction from the night, almost verbatim:

"Daddy, I have a present for you." "What is it?" "I love you."
"Daddy, I have a present for mommy." "Oh, what's that?" "I love her."
"Daddy, I have a present for Bubby." "Yeah?" "I love Bubby."
"Daddy...I love myself."
"I love you too, baby. So much."

UPDATE: Monday 8/19

A bit of a longer post. Imogen is recovering well, but she's going to be sore for sure. Sunday night was a pretty rough one.  As Tammy put it, the "worst night of my life."  We've had a few of those in a row.

The problem was that the morphine blocked the pain, but she was still coming off the anesthesia. What that means is that she was scared and really confused.  She kept asking us to pick her up and hold her–which we couldn't–but don't touch her. At one point, she was especially annoyed at Aaron being on top of her.  He wasn't there.

Monday was mostly a recovery day, making sure Imogen had enough morphine to stay comfortable.  Our incredible neurosurgeon scheduled another MRI for the afternoon to see what the tumor looks like, post-op.  We're hoping he got a bunch out.

The Hematology/Oncology doctors came to see us while Imogen was sleeping.  They were looking into the frozen chunk of tumor.  It was a long conversation, but here's the gist:

1. The tumor is very unusual.  Tumors in the neuroblastoma family are very rare and odd anyway.  They're actually the only kind of cancer that can disappear on their own.  (not counting miracles, which, for the record, I count)

2. Because of the complexity and location of this tumor, they've asked us to participate in a study.  Her tissue samples will be sent to the premier neuroblastoma scientist, doctor, person in the world for review.  It will help future patients, but we may also benefit from it, as he/she will weigh in on her case and make recommendations.

3. The HemOnc folks are actually hoping that the tumor is malignant. Not aggressive, but at least intermediate.  It was the weirdest feeling to hear that, that I should be hoping for real cancer.  The reason is this: if it's completely benign, then they can't shrink it.  Chemotherapy attacks cells that are actively multiplying and dividing. Benign tumors don't multiply and divide.

So, if it's benign, we'll have a decision to make.  If they see some malignancy, then it's chemo.  The way they do chemo for kids is in very low doses, and they combine the medicines in such a way that the bad side effects don't all come at the same time.  She'll still lose her hair, which means I'll be shaving mine.

That's what we know up to this point.  Without further ado, here's a picture of the balloon kingdom. Thanks to mom and all my coworkers at In Touch for sending these:

Timeline through 8/18

Sunday 7pm

She's out and doing well. It is a unique tumor; and it is cancer. As far as classifications go, it is a "more benign" kind of tumor, ganglioneuroblastoma. It will require chemotherapy, doc says. We'll know more after the pathologist looks at it. 

Sunday 1:40pm

First incision has been made for her surgery/biopsy. She's doing great. We're going to eat @ Maggiano's to kill some time.

Sunday 11am

Surgery scheduled to start. Imogen hungry. Hiding banana nut bread. Surgery will not be starting now. 

Timeline thru Sat 8/17

Saturday 8/17 6:00pm

Turns out its a bit more than a biopsy. He'll remove anything that's not connected to nerves. Pray that it's not inside the spinal sac. Well, pray it's disappeared by the time they start.

Saturday 8/17 12:30pm

Talked with docs, they're gonna need a tissue sample to see what kind of tumor. That'll happen tomorrow. 

Sat 8/17 9:50 am

They found a tumor on Imogen's lower spine; they are having the neurosurgeon and oncologist look and talk with us to find out how large and if it's cancer. 

Sat 8/17 6:30am

We woke up to them telling us Imm was first in line for the day. What a relief!

Friday 8/16

Welp, looks like they accidentally skipped us for the MRI. Apparently no one put the order in, and Imogen's been hungry for no reason. Frustrating, but not an accident, I think.