Update 12/19 :: Next!

Just a quick note, for any who don't follow Tam or me on Instagram or Fb.

All is well!  The "robot" is out, and everything went splendidly. Imogen's surgery got started a little late, so we had a really long day at the hospital. She's not allowed to eat or drink beforehand, so the longer it takes, the more enjoyable she gets. Us too, for that matter.  When she finally went to the OR, Tam and I practically sprinted to the cafeteria.

So that's the port that was on Tiny's chest. The port that delivered chemotherapy, antibiotics, blood, platelets, everything. If you look closely, you can see all the different needle pricks from each time the port was accessed. They let us keep it.

Besides the hunger and a grumpy ride home, Imm doesn't even seem like she had surgery. Before the end of the night, she was dancing and singing to her favorite songs from Frozen. By the way, parents, that movie is legit. The next Disney staple. 

Later, we even got to do one of our favorite Christmas traditions, Christmas bark, white chocolate and minty rocks.  So good, and now all my coworkers get to benefit from a great evening.

That's about it. We have nothing more until the new year, and we'll have a consult with a urologist and more follow-up meetings with oncology. Not done yet, of course, but we're really excited about this next season. Thank you for your prayers! 

Update 12/18 :: Robot extraction

In all the times we've been to our hospital, we've actually never set foot on the second floor. It's nice, though, and a paper mâché puppy was there to greet us as we stepped off the elevator. Immy thought it was really cool. 

Today's surgery should come just before noon. We just found out that the surgeon we spoke to a couple weeks ago (about resecting more of the tumor) is the same one that's taking the port out. Great news. We're gonna ask if we can keep the "robot" itself. Trust me, we paid for it. 

Again, it's a fairly straightforward procedure that only takes a few minutes. Most of the drama will be beforehand, depending on how we decide Imm should be sedated. It's definitely a significant day, and we're excited about heading into our next new normal. 

Today also marks the four month anniversary of Imogen's major back surgery, the one that determined Tiny's diagnosis. 

So, say a quick prayer for us, and for the surgeon. We'll see you after. 

Update 12/15 :: Christmas wishes

I've read a lot of posts–too many, really– about the hilarious things kids want for Christmas. Most seem to have a specific amount of money, too, normally in the range of one to ten thousand dollars. When compared with real penguins and superpowers, Imogen's Christmas wishes seem pretty tame.  She just wants an easy-bake oven (done!), her current bike–which will be moved from the garage to the tree on Dec. 24–and some glow-in-the-dark stars for her room. Easy peasy.  And we might let her have a digital camera. She LOVES taking pictures.

Aaron doesn't know what Christmas is. Boom.

As for us, we're gearing up for one of our–hopefully–last big events in this whole cancer journey. On Wednesday, Immy is getting her port line, or "robot," removed. It should be a very simple procedure that takes less than 30 minutes. We've heard varying reports about recovery time and pain management, but she should be completely recovered by Christmas. Phew.

For this paragraph, just pretend I made some long, articulate story about Imogen's stuff being what I want for Christmas. You get the idea.

Something about the holidays puts you in a reflective mood. And generous, I think. Seriously, we have had so many freebies since Thanksgiving weekend. It's a little weird to accept it, and sometimes I'd rather people didn't stare and pity us, but I know that others are offering whatever they can. A sweet lady at Marshall's bought Immy a rolling princess suitcase, someone else bought our breakfast at Waffle House, and the list goes on. I know that the people who did those things will probably never come across this site, but thank you for your kindness. And even more, thank you for being bold enough to act on the leading you felt. It's not easy to go outside your bubble.

After the port is out, Imogen should go back to normal, at least in her eyes. We've still got schedules and scans to look through and plan over the next three months, but all that is for monitoring, not treatment. Please, Jesus. The next meeting we have is January 3, with a urologist. That's where we'll do an ultrasound and everything to see if the tumor has caused any bladder/kidney issues.

As far as an update, we're so thrilled to be able to take the kids to church again, to preschool. Heck, to be able to take them outside without worrying about fevers is a change. Tonight, we get to go to church and have Imm play the bells. It should be epic.

Also, our inimitable photographer, Paige Knudsen, did another photoshoot for us to get Imm in all her bald glory.  Aaron was especially dashing.  Here's a tease.

Wanna see the rest? Click here

Update 12/6 :: Cincy Recap

Well, yesterday was a whirlwind. Imogen wasn't allowed to eat until after her scan and everything was over, so she want over 12 hours without eating. To put that fun into perspective, just think of something that makes you sad.

Honestly, it was a yo-yo kind of day. We liked the folks at Cincinnati Children's. We did. Unfortunately, it just seemed like everything went wrong for a little while. The scan was delayed, the PET scan machine had to be completely reset.  All of that was ok, because Imm was in a great mood, and the staff was great playing with her and distracting her from a growling monster in her tummy. But they removed her nap diaper (much more preferable to a catheter, trust me) before she had fully come out of sedation, and she kinda tee-teed all over herself and.was.INCONSOLABLE. So that was fun.

But, that's not the point of this. Here's the score.

We really liked the surgeon and the oncologist, Dr. Weiss. In summary, he agrees with monitoring Imogen's tumor via MRI every 12 weeks. The PET scan showed no malignancy in the part by the kidney. There is still a little malignancy in there. It's very low, but it's in the part that is closest to the spine. So the only part for which they'd even consider a biopsy is inoperable. 

He's 100% against any aggressive or invasive approaches (chemo, radiation, surgery) from this point on, unless the tumor shows growth in future scans, or if she becomes symptomatic. He reiterated how rare this is, so there's no tried-and-true treatment regiment, and any doc would need time to observe before making any further decisions. 

We feel good that PET scan showed very little malignancy only on portion we could never get to anyway.

So, what's next? Well, Tiny is still at risk for urological problems, whether they be because of a physical obstruction or nerve problems. So, we will be meeting with a urologist for an ultrasound soon to see if her kidneys, ureter, and bladder are all able to do what they're supposed to.

Also, we are officially scheduling her surgery to get her port/line/robot out of her chest. It should be a fairly simple outpatient procedure, but it's still a surgical procedure. We decided to go ahead and get it out of there, assuming chemo will not be part of our plans again.  This will end the whole "fever means hospital" stage of her life, because the danger is really all about the port and line getting a bacterial infection.

So, that's it for now; I'll update more as we know more, and I'll try to get some pics from the scans so we can all see them.  For now, we're done.  It's a mixed bag. It's still in there. We don't get closure or get to make multi-colored posters that scream "cancer free!" We're in that uncomfortable middle ground of weighing benefits vs. risks and praying the tumor doesn't grow.  But we believe this is the best move for us and for Tiny right now. 

So, we should be able to get the port out, and Imm should be completely recovered by Christmas. For now, we have to hurry up and leave Cincinnati before we get snowed in. Thank you for all your prayers!

Update 12/3 :: Fight or Flight or both

As I type, the rest of the family is in bed, undoubtedly with candy canes and all sorts of things dancing around in their heads. We just finished packing for Cincinnati, and we're leaving for the airport in the morning. The hospital got all of the paperwork situated, and we're off. For those who want to know the details–please don't come rob my house; we'll have a sitter– we fly tomorrow, have several appointments all through Thursday, and we fly home Friday afternoon.

Obviously, the "have several appointments" is kind of a big deal. We will meet with the oncologist, do the PET scan, and meet with the surgeon. Hopefully we'll learn a lot. I actually don't know what I'm hoping for, really.  I guess I just hope they get it right. I don't want surgery, I don't want chemo, I don't want to just let it sit on my baby girl's spine. Obviously, some of those are conflicting.

We spoke with our oncologist in Atlanta, trying to sort out the whole issue with the radiologists who have looked at Imogen's MRIs and come to different conclusions. She confirmed that one of the radiologists did, in fact, believe that the MRI shows mild hydronephrosis in her kidney.  (If you remember, our surgeon spoke to another radiologist who said it was fine; that Immy has an extrarenal pelvis)

I know we all know what extrarenal pelvis and hydronephrosis means, but I'll explain just in case. Hydronephrosis occurs when there is blockage and the kidney gets backed up and bloated. An extrarenal pelvis "is an anomaly in people where the renal pelvis becomes enlarged and protrudes from the kidney. It basically means that the pelvis is sticking out. This condition is considered a normal anatomic variant, which means it does not affect the function of the renal pelvis."


The problem is that a blockage could look like extrarenal pelvis. So we'll get additional opinions on that. 
Also, we heard back from the surgeon in Philadelphia. Ironically, the hospital is nicknamed "CHOP." He said that he thinks he could safely remove more of the tumor. In his opinion, there is risk, but he believes he can do it. But he also stated that he would only go in if there were data to suggest that removal of more of the tumor would be beneficial aka worth it.
We know progress is being made, we do. Each conversation we have is helping us understand. At least, I hope so. Pray for us, particularly as we process this information. It's really difficult not to feel that we're back at square one after every conversation.
Overall, though, we're in good spirits. We're happy to be going, very happy that we decided not to drive (fingers crossed for no sickie because of all the yuckos at the airport!), and ready to keep moving on this. Imogen is pumped about the flight, to say the least.
-AJ
p.s. I'm not very good at receiving generosity and the sacrifice of others on my behalf. Unfortunately, that means I sometimes don't honor and bless others who have acted upon their leading or gumption to help. So, huge thanks to you and your family, Jared! They paid for our hotel stay while we're in Cincy. You guys are so stinkin' awesome. It's a big help.

Update 12/1 : Grateful doesn't mean certain

Thanksgiving. I hope it was good for you, filled with lots of family and not too much food.  Or, for some of you, vice versa.  We've had an excellent Thanksgiving, filled with parties, feasts, and seeing dear friends, family, and old friends who live too far away.

But I'm not writing about my Thanksgiving. You probably just had one, and you're about as done with leftover stories as the rest of us.  So, this post is for the handful of people I haven't already updated.

On Monday, we had our surgical consult with Dr. Pitt as Scottish Rite. He was one of our favorites, actually. He was kind, thorough, and listened well.  But the meeting was confusing. If you read my last update, we were gearing up for surgery, or to be convinced that surgery was worth it. However, Dr. Pitt was very clear–adamant, even– that surgery was not something he wanted to do.

So, we were confused, and were able to speak with him for a while about the risks and benefits. As a refresher, Immy's tumor is paraspinal– it's across and around her spine, and off to the sides as well. There's a large chunk by her right kidney. We have been told there was risk of the tumor blocking her ureter and causing urinary tract infections and other problems down the road. In Dr. Pitt's opinion, Imogen's kidney looks healthy, so that likely means the ureter is not obstructed by the tumor.

However, Imogen is at obvious risk for urological issues, given the location of the tumor. If there is a problem, he believes it is happening at the neurological level, and Imm will be scheduled for regular ultrasounds from here on out.
So what does all this mean? Well, nothing has really changed, as far as our schedule is concerned. Tam and I decided that we want as many of the best looking at this, so we agreed beforehand that we would go to Cincinnati, regardless of the surgeon's recommendation.  If they had wanted to do surgery, then we'd want to know that was the right thing to do. If they didn't want to do surgery, then we'd want to know that was the right thing to do.

So we wait to see what Dr. Weiss and his team in Cincy think. They're reviewing Tiny's entire case, and we'll be doing a PET scan and an exam when we get there. We couldn't go right up there this week because of the holiday, so we took the news and waited. All we could do, really, with Thanksgiving all over the place and everyone else feeling super thankful about friends and the air and lamp.

Really, though, I am grateful for so much. Not because, well, this "could be worse." I'm thankful because circumstances, bad or good, don't determine anything. Trust me, our families have plenty of crappy circumstances to deal with. We are far from certain about what to do. Each new turn brings as many questions as answers. I'm sad, confused, and a bit angry. But I'm learning to be grateful in spite of what's around me. Seasons change, frost comes, winter ends. I have a family I love desperately, and God is faithful. That's a pretty good place to start.

A couple things coming up:
1. We are trying to think of the best way to get to Cincy. Airports are disgusting this time of year, so it looks like we may be driving. Pray for that fun stuff. And we will hopefully get at least a day's notice before we're supposed to go.  
2. We want what's best for Imogen. Although it will be incredibly confusing if the docs in Cincinnati disagree, we want to do the right thing for her. Surgery, to me, seems really risky. If it's necessary, we will have a horribly difficult decision to make as parents.
3. Awesome news, though! The hospital and the oncologist is in-network. Booyah.
4. Aaron/Bubby has been a little sick. Poor guy threw up in the car today. Maybe that was Waffle House. Maybe mucus. I don't know.

And finally, Imogen in a sweater dress and boots: