Traffic in Atlanta, yellows in Lilburn

Sitting on 285, just before Spaghetti junction, I realized today might not be the day. For non-Atlanta folks, this week was the worst traffic I've seen in a long time.  So, on Friday, we left home for our MRI with plenty of time to spare, and managed to arrive almost 30 min late.

Monday
I'll back up.  The PET scan went well, and Imogen was great. Normally, the IV "poke" is the worst part of the whole experience, but we were so blessed. When the nurses were about to get started, we decided to ask if there was another way. [Imm had gotten gas sedation for her tonsils, so we were crossing our fingers for something like that.] No, said the nurse, it's a different kind of sedation and that's not available.

Just then, the other nurse poked her head in the room. Actually... we can do nitrous oxide to calm her down, just for the IV. Not very many doctors do it, and there are only two at Egleston that are allowed to. Well, it just so happened that Dr. Dixon was at the hospital, and even in the hallway at that moment. So we got a couple i's dotted, and on the mask went, complete with strawberry-scented lip smackers. IMOGEN LOVED IT. Nitrous oxide is laughing gas, by the way.  She wasn't laughing, but didn't even notice–or remember afterward–the IV. Only a goofy smile greeted us as the blood draw started.

On Tuesday afternoon, we got some uncertain results from the PET/CT. The CT revealed three spots on Tiny's lungs, and her SUV count had gone up from 1.3 to 1.8 around her spine. Both were kind of terrifying, and it was hard to get a good handle on exactly what that meant.  The docs had to look at her scores and compare them from before, but we were able to come to a general conclusion on Wednesday: we're ok.  The score increase does indicate the possibility of more malignancy. The increase, however, is within the normal variation, particularly because the PET scans were done on two different machines. 

i.e. It's more like the difference between a 94 and a 95 on a test, not the difference between an A or B. At least that's what we think for now. It's considered a stable result, and there's no change in her treatment; still monitoring and testing only.

Obviously, the MRI can reveal a bit more, especially around the spine, but the lung spots, the pulmonary nodules, did not show abnormal SUV levels, and they were the same size as the last CT scan (which wasn't reported to us; kind of why it freaked us out in the first place.)

Friday
Now back to traffic: we were unable to get the MRI on Friday, and it's been rescheduled for next Thursday.  Like both grandmas were trusting it would, it has already proved to be a blessing. First, Imogen can now get the laughing gas with her IV! That alone is enough reason to do it. Second, we found out that she needs two MRI appointments. The order at first was for thoracic, lumbar, and pelvic slides. The problem is, somebody forgot to schedule the abdomen, too.  Remember all the urological stuff we were concerned with? The doc had said that an MRI of the kidney would be super helpful in finally ruling out urological issues or potential threats. Getting 4 slides is too long of an MRI for a Tiny, so we got another MRI scheduled for later in March, too. A bit annoying, but I'm glad it's at least all happening.

Thursday
I'm fully aware that Thursday is before Friday, but I'm taking license to go out with a bang. Chick-fil-a is hosting a benefit day for Imogen on March 17 at SIX different stores, and they wanted a picture for promotional materials. After scrolling through our phone camera rolls, we decided to make it special. Our lovely friend and photographer, Paige Knudsen, came with us to downtown Lilburn and photographed the kids on Main Street. It was gorgeous.  [Aside: If you're in the Gwinnett area, make a stop in Lilburn. There's a great restaurant, and the park is wonderful. We're so excited about the area being revitalized.]
So, I'll leave you with the gallery. I'll have more updates on the Chick-fil-a day, and thanks for your prayers on the upcoming weeks. We have a lot more tests and meetings, so keep praying for healing and peace!

...

How to prepare for healing, part 2

This is the second post on my journey to understand God's will, and how His goodness is revealed in every situation, even when He doesn't do what I think He should, the way I think He should. Read part 1 here.

If I have any aptitude in scheduling a post, this should come to you as we are in the hospital, getting Imogen's PET scan. You know what makes sense to me?  That the PET scan comes back, and they can't find anything. The doctors tell us they may need to do it again, but they'll wait to see what the MRI shows on Friday. But that comes back negative, too. They run a million tests over the next few months, but the cancer is gone, disappeared, healed.

I do believe in miracles; I am all in on God intervening in miraculous ways. But there is perhaps no more constant theme of the gospel than this: pain and suffering gives rise to salvation. Jesus was never worried about living in the balance of miraculous intervention and pain. He didn’t see the need to justify God’s goodness in the midst of trouble. He didn't shy away or try to make excuses for God and His will. Time and again, the most dangerous occasions brought about a fuller revelation of God’s character. From what I can tell, as often as He promised peace, He promised pain.

While God has not yet come through the way I’d like, or the way I think He should– or, perhaps, the way I think I would if I were Him– I will not reach the conclusion that I have figured out His will in this. Considering that I've now heard two sermons from the book of Daniel this week, I think God might be trying to teach me something. Shadrach, Meshach, & Abednego made their choice not to bow to the golden statue of Nebuchadnezzar. They made this choice, anticipating that God’s will would involve a miracle, that He would intervene.

I do wonder if they thought He'd come to their rescue before they were arrested, or before they were shackled, or before they were tossed into the flames. Maybe Abednego was at peace with dying a martyr's death once the guards tied his bonds. I don't know what each man was thinking, but they seemed to live in the holy balance of expecting breakthrough without demanding a desired outcome. "But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” (Daniel 3:18) God clearly isn't on trial here. Their faith is not dependent on what God does or doesn't do in that moment. He's not worthy of worship if He obeys our prayers. He is worthy and He is able, and the next moments in our lives don't change that.

The hardest part of the story for me to accept is the timing, actually; that it was only in the midst of the flames that the king and his men saw Jesus. “Look! I see four men walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods.” (Dan.3:25) Sometimes, God waits to show up until it seems most dire.

So, I trust that He will heal. And even if He does not, we will not put our faith in another way, or set our hearts on more tangible alternatives. We will not settle for less than hope in the impossible.

Anyway, that’s what I want to believe.

Snow fun, my cute valentine, and Impending Scans

Thank you Auto-Awesome!

Lots of updates in here. Obviously, I think they're worth reading, but if you just want the medical updates, scroll down:

I hope everyone on the East Coast had a great snow vacation. We in Georgia are about done with this white winter stuff that keeps wrecking our weeks. For any who weren't tuned in for the second wave of snow and ice, here were my favorite nicknames and hasthags:

1. #Snowpocalypse2
2. #Snowmageddon2
3. (and my personal favorite) #Atlantarctica

Basically everywhere was shut down for us Tues-Thurs. It wasn't too severe on Tuesday, so we went to God's Gift to Parents of Tinies, better known to the public as Catch Air, and the kids had a BLAST.

mandatory "wrecking ball" caption

I can't tell you how full my heart was watching Imogen run with her little bro and her cousins without a care in the world. Her movement is strong, her legs are working, and her smile is coming straight from a full heart. We are so blessed that she is doing so well, and it sometimes takes those moments to remind me of that.

After that, the snow and ice really hit, so we were stuck at home. Imm was with her cousins, having the time of her life and Gram and Papa's house. But we still got some good playtime in:

For Valentine's Day, Tam and I had already celebrated ours the week before with a trip to the beach, so I had a date with another little beauty at my house. This was waiting for me when I got home from work:

Overall, a pretty special night was had. She was a doll, and loved her macaroni dinner.  I had to slightly shame our waiter a little bit, as this is how the evening started:

Him: Just you two gentlemen this evening?

Me: Nope.

Him: Oh, I am so sorry.

me: Yeahhh, it's ok. *death stare*

~pause~

Him: So, just the two of you, no one else?

Me: No. It's just us.

~Another awkward moment as he realizes not to ask a dad at Valentine's dinner with his daughter whether or not we're missing obvious elements of a complete family. I almost made up a story about losing my wife just to see if he would crumble, but I refrained.~

But, we wouldn't let that ruin our evening, would we? 

Nope. We had a blast.

Medical Stuff:

It's time for our scans. Hard to believe it's already been more than three months since our last round of chemotherapy.  Gosh, I hate that stuff. But to catch you up to speed:

Catecholamines and pee: once a month, Immy has to pee in a cup, so we can monitor her catecholamines. Basically, her urine is sent off for special testing at the Mayo clinic, and her levels are compared. The higher the number, the more likely there is an active/immature tumor in the body. 

There are two key counts we look at, HVA and VMA. A normal person's numbers would look like this:

HVA: less than 13.5

VMA: <13 p="">
Imogen's counts in August:
HVA: >60
VMA: ? not measured

January:
HVA 28.5
VMA 11.7

February:
HVA 24.9
VMA 11.8

So, her counts are clearly still high, but they look to be dropping, which we think is pretty good news! Honestly, I'm not sure of the ranges or of the margin of error, but I'm happy to see it continue trending downward.

Schedule:

Tomorrow, 2/17 – PET Scan at Egleston

Next Friday, 2/21 –MRI at Scottish Rite

Monday 2/24 – Echocardiogram, Audiogram to determine short and long term damage from chemo; Scottish Rite. And meeting with oncologists.

So, we're back in it for tomorrow. Imogen has gotten used to being at home, not getting poked and prodded by nurses and doctors. I'm very thankful for that, but it will mean that tomorrow may be difficult. Currently, we know that she will have to get an IV (ticks me off), and she'll have to drink her contrast for the PET. They promise it tastes ok, like fruit punch or something. Right.

The PET scan is a long process. Again, Imogen can't eat or drink anything once she wakes, and there is a period of about 45 minutes where she basically has to stay still. [PET scans measure sugars, and sugar rushes over to muscles and limbs when you use them; so, being active can mess up the results]

So, we're so thankful to have our adopted auntie Sarah coming to the house to watch Aaron while Tam and I go. Again, I also want to give a shoutout to work: you guys have been so understanding and accommodating, every step of the way. Love you all.

As far as results go, they will let us know if they see something alarming. For the most part, though, we won't hear any results this week, as the radiologists and oncologists will use both the PET and Friday's MRI to come to conclusions about where we stand and where we go.

If anyone actually read this whole thing, kudos to you. And thank you. Pray for us tomorrow. Pray for me; pray for healing.

From then to now

....aaaand we're back.  I haven't posted in a bit, so I'm sorry to those who are praying for us wondering how we are. To be honest, though, I am so pleased to be able to have this self-imposed, unintentional sabbatical from the blog. Imogen is doing great; I have updates, and most of it is good news, so I will get back to regular updates.  We have a lot of test results and upcoming scans, so I do request your prayers.

And you're going to love the pictures that are coming soon.

Until then, though, I wanted to share something.  We recently were asked to tell our story, as part of a fundraiser Chick-fil-a is doing on our behalf.  (Yep, it's pretty awesome. Thanks, Linda!)

Many know our story up to this point, but I wanted you to see a snapshot of the road we've been on.  This is a lot of information, and we could have written so much more about the uncertainty and the emotions. We couldn't include the challenging, heartbreaking, and encouraging conversations we've had so many times with so many loved ones.

Tammy wrote this recap of Imogen's story, and we both wanted to share it with you. So here you go.

The beginning

Imogen spiked her first fever March 17, 2013. For the next five months, she had countless fevers, all reaching the 103º range. Often accompanying the fevers would be pain in her legs and severe limping. At times, she was unable to walk at all. Her weight began to drop, and her energy waned significantly.

We took her many times to the orthopaedist, which only resulted in more confusion and missed diagnoses. Immy endured four ER visits for the same issues, and we were told each time that this would pass.  It didn’t pass. During each ER visit, bloodwork was done, and the results always showed normal levels because the then undiscovered cancer doesn’t cause changes in blood counts.

A normal Thursday

On August 15, 2013, Imogen spiked yet another fever, and I rushed her back to the pediatrician. Her loss in leg function was alarming to our new pediatrician (we switched), and we were sent to Children’s Healthcare of Atlanta at Scottish Rite for immediate admission and a neurological consultation. The neurologist ordered an MRI to find out what was going on. What followed was a revelation we feared but never expected to encounter.

The MRI showed a tumor, wrapped around Imogen’s tiny spine and extending out toward her right kidney. It had infiltrated some of her back muscles, and was compressing her spinal cord. The location of the tumor meant it was wrapped around the nerves that control most of the functions for her lower body. Immediately, the neurosurgeon planned an emergency resection and exploratory surgery to see if the tumor was intra-spinal or extra-spinal. We didn’t know it at the time, but that discovery was the difference between life and death for our Tiny.

The next morning, Imogen went in for major back surgery; it was a 6 hour ordeal, in which her spine was separated and lifted away from her body like the hood of a car.  The surgeon cut away as much as he could for testing, and to relieve the pressure on her spine. Thankfully the tumor was pressing on her spine, not coming from within. Again, we didn’t know this meant she would live.

Diagnosis and treatment

The results came from pathology a few days later, and the diagnosis was ganglioneuroblastoma, Stage 3. A rare case of a rare cancer. More testing and probing ensued, and we were thankful to find that the cancer was not present in Imogen’s bone marrow, lymph nodes, or anywhere else in her body. The prevailing opinion from our oncologists was to start chemotherapy to see if we could shrink the tumor away from the nerves, with another surgery on the horizon if this treatment were successful.

So we began chemotherapy. We had planned for eight rounds of chemotherapy, occurring for three days at a time, three weeks apart. Imogen’s body and immune system was more heavily impacted by the chemotherapy regimen than anticipated. While it was supposed to be an outpatient treatment schedule, we had multi-day stays at the hospital seemingly every week. At the midway point after four cycles, we scanned again, and the doctors told us that the tumor was not shrinking, and the chemotherapy was doing more harm than good. So, we altered the plan and canceled the remaining chemotherapy treatments.

Today

Currently, we are in an observational period.  The docs are also running monthly urine tests to see her catecholamine levels, which tells us if there is increasing or decreasing malignancy in Immy’s body. As of the last test, her levels are still elevated far above normal, so we know there is still malignancy.  Surgery is not worth the risk, and chemo isn’t working, so we are waiting and praying that the tumor will continue to mature and die off on its own. We are monitoring Imogen’s progress and doing body scans every three months, with MRI and PET scans, so it is an ongoing process of testing, probing, and researching.