8/29: Adjusting to home

As I write, Aaron is running with a butterfly net and begging me for more jelly beans.  Tam and Imogen are upstairs sleeping.  We're just getting started.

Yesterday went as planned, and we were able to come home to a beautiful array of presents and newly painted rooms. To say we're blessed by our community of support would be an understatement.  Imogen has been excellent at home, and is walking by herself a good bit. We can still tell there are some after-effects from her surgery, but everything is improving, little by little.

It was absolutely wonderful to sleep in our own bed and have Aaron at the house–even if he woke up at 6 am.

We have a couple of weeks before we go back.  I think our next round of chemo starts Sept 16.  The hardest thing is watching out for fevers or anything out of the norm.  Hard to tell what the norm should be now anyway!

For anyone keeping track, a couple things on our horizon:
1. Imogen and Aaron love puppies.  Call me a sucker, but after all this, I am ok with her having a cute dog to love and play with. I'm guessing he/she needs to be hypoallergenic.  Right?

2. One of the side effects of living in a hospital and getting cancer is becoming quite spoiled. Imm is already behaving more now that we're home and she has Aaron to compete with, but Lord have mercy.

3. Pray against fevers. It's one of those simple things that can become deadly if it's not caught in time.  We'll learn a lot in the next two weeks about how Imm's body handles/recovers from chemo, but she has to be rushed to the hospital if she spikes a fever.  Pray she continues to do well.

4. So many have asked what they can do re: meals and other things.  Honestly, I have no idea.  We know we'll need help, but it's hard to know in what way.  In the meantime, just keep praying.  I'll list some needs on the blog as more arise. And maybe we'll have a point person to organize stuff.

5. Imogen won't remember much of this, I know, but I want her to have a record of the prayers folks have prayed. When Imogen was born, I created a gmail account, imogenclairepassman@gmail.com.
I think Google had a really cute video about doing that for a baby (and she won't have to be imopass237@gmail, either.)  Anyway, if you've been praying for her, or if you know of people who have, take a second to send her an email with your prayer or story. I just heard today about a high school student in Florida who had over 100 people praying for our sweet girl, and I had no idea!

I will keep updating this blog as things happen.  I also have a lot of wonderful stories to recollect and photos and videos to share from our journey. Stay tuned!

Update 8/28: Almost home

With Round 3 finishing up earlier this morning, Imm has officially finished her first treatment of chemotherapy.  She did incredibly well, so thank you all for your prayers.

The doctors and nurses decided that we didn't need to stay for a class on Thursday, after all.  Called us "competent parents," whatever that means. Anyway, we've been gearing up to go home since.

Today has been a good one. Imogen only got sick once, and she has felt better since. Also, the staples in her back were removed today. She did NOT enjoy that, but it only took about two minutes.

We're here for the next little bit while she gets a blood transfusion.  Her hemoglobin counts have been low since her surgery, so she's getting someone else's.

I'll update again tonight when we're home!

8/27: Gearing up for Round 2 of chemo

We're thrilled to say that yesterday went miraculously well. Not only did Imogen sleep through most of her actual treatment yesterday, she hasn't been sick at all!

We're probably going to do Round 2 around the same time today, so keep praying for her strength. 

A couple specifics:

1. Her hemoglobin was a little low in her blood tests. They expect it to go up by the time she's done tomorrow, but let's make it happen, shall we?

2. Imogen has started walking again, and she walked a LONG way this morning before her legs got tired. She's dragging her left leg like before, so pray for that to be restored.

3. Sometimes allergic reactions to the drugs can develop immediately; sometimes it can be 10 days afterward. Pray her body continues to accept the meds wth no reactions. 

4. We miss Aaron. We're so grateful to my family for stepping up, but we're ready to be home with Immy and Bubby. 

8/26: Begin

Today is the day it seems we have been endlessly prepped for. Surgeries and blood tests and training have led to noon today, when the chemicals begin to course through Imogen's body, searching  out the cancer, and hopefully shrinking it. 

I lay awake last night thinking of the journey here. How emotional it's been, how brave Imm has been, how proud I am of Tammy's strength and persistence. I used to beg God not to give me a child with a disability or disease. I told Him that I wasn't cut out for this, that if He knew what He was doing, He'd pick someone else. Normal kids only, please, because I can't handle it. 

I was wrong, and God is good. He has been with me through it all, and I'm proud to say we can do this. And in a way, I'm honored He chose me. 

Update 8/25

There wasn't a whole lot to report yesterday, THANK YOU GOD.  It was a wonderful break from the constant poking and testing and probing.

In the last couple days, the biggest news to report is that the MIBG scan (the nuclear one) came back negative.  That means that the cancer is not present anywhere else in Imogen's body!  It's great news, and confirms that the tumor is localized.  We're still awaiting the results of the bone marrow biopsy, but the docs say it's overkill once the MIBG scan results are in.  So, amen and thanks for your prayers!

Since then, Imogen has been eating and drinking more– as have mom and dad– and has been having fun feeding fish and playing.

Highlights:
Imogen took her first bath in the shower since her surgery.  She was a total champ.

Every child diagnosed with cancer is eligible for a wish from the Make-A-Wish foundation, so we're working with Imm on what she wants. We told the social worker that if she wishes for a new Honda Odyssey, then mommy might have had something to do with it.  I see mouse ears in our future.

A sweet thing they do for kids is Beads of Courage, a necklace they make during their treatment. Every time Imogen undergoes any sort of treatment–from pokes to chemo to changing bandages–she gets a different color bead for her necklace.

It's amazing to see how much she's already gone through, and sobering to think of how long the necklace will get before we're done.

Pics from the weekend:

We have been overwhelmed with kindness and offers of food and service. Thank you all, it has made this experience much more joyful.  Pray for us as we begin chemotherapy tomorrow morning and as we   make ready to go home.  We're still not sure how much of Imogen's walking ability has returned, so if anyone has a spare child's wheelchair, we may need one.

Tammy and I got a crash course for what to expect, so pray for four things as we come to your mind:
1. That the cancer would disappear completely.
2. That Imogen's reaction to the chemo will be the best in history. No vomiting, no nausea.
3. That Imogen's recovery from her back surgery will continue to progress. It's been excellent so far.
4. That our adjustment back to home life will be joyful and smooth.

Update: Port is in!

Imm's port is in. Everything went well. It was a bit traumatic waking up, as she knew that thing does not belong in her chest. We had to hold her arms and legs to keep her from clawing at it. Some of it was confusion from the anesthesia. Much better now. 

She's asked about the port and seems ok with it being there now. 

Ready for a fun day; we have visitors coming and arts and crafts to do. Met with social workers who were great! 

Update 8/23: port going in now.

Tammy and I are enjoying a brisk, 72 degree, August morning. We sip our coffee and reflect on the past week. We came in last Thursday, and now one of our babies is getting a port for chemo installed in her chest. 

Really, we feel at peace. Still praying for complete healing, but ready to take on what's ahead. 

Yesterday was a total whirlwind. From the moment the pathology report came back, we've had tests and EKGs and meetings with doctors and room changes and scans and IVs and physical therapy and more. 

Speaking of physical therapy, Imogen had her first session yesterday and did really well. She scooted and slid all over the playroom. 

Unfortunately, Imogen came back from her scan without super powers. We have moved to the Aflac cancer unit now, and our room is MASSIVE, and inexplicably has xbox360. It's the little things that lift your spirits. 

Like Aaron. We got to play with him for a bit while Imm was undergoing the scan. Happy little nugget. 

We did talk with neurosurgery and oncology, and they are good with starting the chemo on Monday. So thankful for that. This daddy was uneasy about chemo possibly starting today. So, other than this morning, we should have a really easy weekend for Imm to recover and play. 

Chemo

The pathology came back, and the docs reported they were able to find some malignant cells in the tumor samples. Their wording, not mine. 

All things considered, all the coats here seem thrilled, because that means they think it can be shrunk. Still processing, obviously. 

Right now, we're waiting to get Imogen's body scan done to see if cells have spread anywhere else.  They'll also do a bone marrow thing while she's sedated. 

Prayer request: been a rough day that has moved more and more quickly for us. Every time Imogen has tried to take a nap, the door opens with a new face for a new test. 

We're moving rooms to the cancer floor today, and she's getting her port in tomorrow. We're finding out schedules and seeing when chemo will begin. Docs want to start tomorrow; we're hoping she could have a couple more days to recover from surgery. 

Scan moved up; PT moved back

. This pic is from the first day we came in. I just keep thinking of how wonderful it is that her brain is clear. Her personality is gorgeous. I don't know what I'd do if we risked losing that part of her. 

So, Imogen has had a fantastic day so far, other than a couple low points when she was getting medicine. We did arts and crafts and sang and watched TV.  And Imogen got to pet a dog, and now we'll be purchasing one as soon as humanly possible. 

They moved her body scan up a day, so it will be tomorrow instead of Friday. The physical therapist hasn't come by, so that may not happen until tomorrow. We'll see how all that works out.

With the scan being pushed up a day, that means Imogen got her nuclear injection today. I don't wanna shoot too high, but I'm hoping for superpowers. She's been asking to get up and be held, and she's had wet diapers regularly. 

We had some wonderful visitors today and three lunches, so we're stuffed and Imm is sleeping. 

Pics from the day:

Watching the aquarium video board with Mimi

Rough night

Last night was a bit of a challenge for the three of us.  Imogen had not peed since they took the catheter out, and after 8-10 hours, the team of doctors and nurses get pretty adamant that she needs to go.  We tried everything to get her to go. The water was running, warming pack were on her tummy.  We even sang "Spring Up, Oh Well." (thanks, Jon and Amy)

But in the end, Lisa–our nurse–had to put in a small catheter and get it out because Imogen's belly was getting pretty round and firm.  It was really tough for us because she had been sleeping so peacefully, and we had to wake her up and help hold her down as she screamed for us to stop.

But it was so good we got it out of there, and there was A LOT of tee-tee for such a Tiny.  And she still wanted to sleep with both of us, so no lasting emotional damage, right?

This morning, the surgical nurse came and took off the bandages on her back and said Imogen is healing very well.  No issues there.  The hard thing will be for Tammy and I to wash it and know that we're not hurting her.  But it's a great step toward recovery.  I won't post a picture of that here.

Anyway, still hoping for pathology results to come in on Friday, the same day Immy has her body scan.  I'll be posting a couple pics and videos of the room and Imogen later today for all who haven't been able to come in.

Nurses #ftw

Nurses are AWESOME.  Queens of the night.

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.