Update 12/19

Ok, so we got our update from the oncologist. Counts went back up slightly, but are within "new normal" range. The radiology board has concluded that the tumor is larger in a few areas on the right side, and possibly smaller in another area. It's all a matter of millimeters, so whatever's going on, it's slow. 

What does this mean for us? Well, nothing, right now. We're still monitoring, and have moved up her MRI to 12 weeks. Immy has been having on-and-off leg pain again, so it could be connected. 

Where do we stand, treatment-wise? Well, if things were to get worse: chemo isn't really an option anymore, because Imm didn't really respond to it the first time. So, our only real option would be more surgery—very dangerous, morbid surgery. So, the plan is to continue monitoring, unless she starts experiencing adverse effects from the cancer. 

We feel fine; we're not worried. The oncologist isn't thinking it's an emergency, and she feels confident we'll know more once another scan is under our belt. 

#teamimogen #imogenclaireneedsprayer

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Update 12/17/14

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Christmas at #CHOA.

Sorry we didn't update yesterday, but Immy did great. The only issue was having to get poked THREE times before the IV worked. 

Basically, there's not a lot new to tell. We will know more by the end of the week, but basically every radiologist that has ever looked at Tiny's scans got in a room to discuss what they think is or isn't happening, because the latest guy reported that the tumor grew by millimeters here and there. The oncologist doesn't think it's relevant, so they'll duke it out and let us know. Yeesh. We should also find out her urine counts on Friday, which will tell us a good bit more about how we are trending. We feel good, it's just more non-answers than answers; kind of par for the course. But from what we can see, she is healthy, happy, growing, and full of joy. Thank you for your continued prayers and notes of encouragement. They mean so much to us, still. 

Update 12/14

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What a difference a year makes. Immy last year vs. this year at the kids' Christmas bell thing. 

Tomorrow morning, we go in again for an MRI, to see if the tumor has grown or changed since earlier this year. It's always a stressful and anxious time, and the mornings can be difficult for her (not allowed to eat or drink anything). Thank you for your prayers and continued support!

#TeamImogen #imogenclaireneedsprayer #pediatriccancer

...Or Not

We are back from the hospital now, resting at home.  By the way, we're so grateful to our parents, who have been amazingly helpful, taking Aaron and bringing us whatever we need. Thank you, unsung heroes!


I've gotta make this quick; my apologies for any typos or unfinished sentences that


So, we talked with the surgeon after, and here's what Dr. Grey's Anatomy said:  He didn't see a hernia.  After drawing out a picasso-looking diagram of the human body, he explained that there was no "hole" that he saw. Look up hernia on wikipedia, if you don't know exactly what it is. Instead of a hernia, he believes there's a weakness of the abdominal muscles due to nerve weakness/damage/suppression from her surgery or the tumor itself. So far, it's not dangerous to her, as there's no risk of any bowel or other stuff getting stuck and strangled in there and going toxic. Moving forward, the muscles could get stronger, could continue to weaken, or it could stay the same. So, with nothing to do, the doc just played paparazzi and just snapped pics and got out of her belly.

For us, it's frustrating, because we can see a bump poking out of her tiny little abdomen.  It's also another thing with no clear resolution. Add it to the list. But we are glad that the surgeon didn't do any unnecessary surgery, and she did really well with sedation and is recovering fine.  Pray for peace and wisdom and patience for us over the next few days– Immy is really cranky from sedation and medicine, a tree root attacked Tammy last night and snapped her ankle (ER trip, x-ray...sprain), and we're training a puppy who eats pacifiers. We have scans coming up in a month, and we're trying to figure out exactly what we want to happen then, and what we need to do leading up to it.

I'll update again soon when we have some time, but that's it for now.  Thank you all for your prayers!

Reparations

It's been a while.  Thank God.

The last few months have been blessedly normal.  In fact, we just got back from Immy's Make-A-Wish cruise, and the kids had a blast! I'll do a separate post for that soon with lots of photos.

Getting a princess makeover on the ship.

For today though, we have a quick request for prayer for Imm. This morning, she has surgery to repair a hernia in her lower abdomen. If we've spoken about it before, it's the "bump" we kept seeing.

So the surgeon is going to do a couple things this morning.  First, he is going to repair the hernia, obviously. It's likely a result of either her surgeries or treatment from the last year, so he also wants to see if there are other weaknesses or damage inside that he could fix at the same time.

It looks like we'll be outpatient, but, depending on how much the surgeon sees and fixes, we could be admitted.  Pray for success and no pain for our Tiny.  We'll update when we're out!

Update 6/30: Scans done, good news

Thank you for the prayers. Tiny did so well, and we had a great day. Scans showed no changes, so we are looking to move the scans out to every six months now. She is a Fun magnet in these waiting rooms, making friends. And I've never seen a happier little one, even in a hospital gown & an IV sticking out of her hand. 

#teamimogen 

#imogenclaireneedsprayer 

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Update 6.30 — MRI day

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Update 3/16 — Counts down!

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Great news! Counts are down! We just got the results back from Imogen's urine test, and her HVA and VMA is the lowest they've been since everything started. 

Thanks for the prayers, and we hope to see many of you at Buffalo's in Loganville tomorrow!

Update 5/12 : Reorientation

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Mother's Day was a pretty special day for us. A year ago, we had gone to the hospital a few times by now, but we had no idea what the next year would hold for us. For our part, we're incredibly conscious of the highs and lows of parenting, distinctly attuned to the balance of setting a course but relying on God when things go wrong. Faith. Ugh. It's not easy.

 Tammy has a post of her own coming up, so I'll let her elaborate later. but I wanted to update everyone on the latest developments with Imogen. (and Bubby. He's fine.)

I'll just say that we're grateful. We're so grateful to be parents; so grateful to still be able to say we're parents to two amazing children.

Imogen's last catechol counts in her urine showed that the HVA an VMA both went up. Again. [[When we got the last PET scan, one of the assurances we received was that these numbers had consistently been going down since diagnosis]]  Needless to say, it's not the most encouraging news. After talking with our oncologist, we're not freaking out, but we have scheduled another urine test, to see if the counts are truly trending up. Our doctor says that tumors can do this, even as they're dying, but we want to be sure that we're on top of things.

Unfortunately, there's no magic number that tells us if something is wrong or ok. All we know are the trends. So we have a little bit of anxiety heading into Wednesday, and then looking forward to June for Imogen's next MRI.  At this point, there's no reason to order another PET scan. Since last week, Tiny has had a bit of a cough.  Bubby had croup, so it could be related to that, but she hasn't shown other symptoms.

So, of course, our minds go to the tiny but unexplained nodules on her lungs from the last PET/CT, and the "small" growth of the tumor shown in the last scan.  So, after a couple of months with hardly anything new, we're getting accustomed to worry/faith/decisions/frustrations/uncertainty.

If things go poorly, then we do have a few options for different treatment, and we'll likely schedule a chest CT soon to see if those nodules have changed at all. There are some trials around the country that Imogen could be entered into, because her tumor didn't respond to chemotherapy.  There's also Accutane, which is an option that is prescribed to some patients.  It does a similar type of thing as chemo, trying to "dry out" and kill the bad cells.  Accutane, for those lucky enough not to need it in high school, is one of the ingredients for popular acne medication. As many know, it dries you out big time. When it's used as cancer medication, it can be very uncomfortable. Cracked skin, bleeding lips, a lot of little pains.

By way of announcement, we have a fundraiser this weekend for Imogen. A sweet friend has organized a night 'o fun at Buffalo's Cafe in Grayson this weekend. There will be a silent auction, a car show, and tons more. Check out the Facebook Event for more info. We hope to see you there!

So, say a little prayer for all of us. For Tammy and me, that we would have peace and make the right decisions. We want to do what's needed, but I don't want to put Imogen through more treatment if it's not necessary. Most of all, I feel I need the faith to listen for God's leading, to listen to what He's telling Tammy, and to know what is best for Imogen. And what's best isn't often what's easy or what makes me feel like I'm in control of the situation.

Pray for Aaron. He may have the biggest heart of all of us. Pray that God's love will cover him, especially in times where he can't get the attention he deserves and needs from mommy and daddy.

Most of all, pray for Imogen. Pray for healing. Pray for her heart. She's so innocent, you guys; it's unbelievable the way she sees the world so purely. Most importantly, she sees herself as normal; her sweet spirit hasn't been spoiled by the dirtiness of worry or fear. She's been protected from that. It's a miracle and a testament. She has fought so hard, but is not battle-hardened. She's incredibly tough, but is as tender as any little girl deserves to be.  For this, I'm so very grateful.

Easter prep

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Insta-update: 3/31 Done and Praising

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Yay! Imm looks great! All numbers seem to be trending down, including PET. We like our new doc a lot. Ill update more when I can, but for now, it's great news!

Insta-update: ready for PET

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Update 3/31 :: Off we go

It's 5:30 in the morning on Monday, and we're about to wake up Immy Claire to head to Egleston. Today's a big day. She'll get her PET scan around 9-10. Rather than waiting for results, we're actually meeting with her new oncologist today to go over the results as soon as they're in. Pray for peace, pray that Immy is super happy, and pray that everything goes quickly and smoothly. We'll know a lot more about our next steps this afternoon. Thanks to everyone on Team Imogen for your prayers and thoughts today. AJ

Update 3/23

What a week!  Thank you to everyone who came out on Monday to Chick fil a! A lot of nuggets were consumed, the kids had a blast, and we were blown away by the generosity of all who came.


We're still getting pictures in from the different locations, but we've seen and heard stories from each one. Thank you!

 By way of update: Imogen's next PET scan was indeed moved up. Rather than waiting 12 weeks (or 6 months, which is what the previous doctors said), our doctors in Cincinnati and Atlanta agreed on the need to scan again, sooner rather than later.

Frankly, I'm scared. I'm thrilled to be in more capable hands, but this next scan could change everything. If the SUV score continues to rise, then that's bad news. So, please be in prayer for Imogen and us as we head toward the PET appointment on March 31.

Also, pray we don't have any more issues with our insurance. They initially rejected coverage on her last PET before "reversing the adverse decision" in a letter. Just pray that trend continues. From our bills, an uncovered PET is about $12k. Obviously, we'd do it anyway, but it'd be nice to have coverage on it.

To those who have ordered a shirt via the GoFundMe account, I promise it's coming!  We ordered some more, and they'll be sent this week, as soon as they're printed.  Don't forget to give your address, and your shirt size(s) when you order!

Update 3/17 : Spirit Night and Oncological Adjustments

Don't make plans for dinner tonight.

Well, make them, as long as they include Chick-fil-a. Normally, I love St. Patrick's Day anyway, because I love harping on my diluted Irish heritage (much to the disdain of my real Irish "sister," Hannah.)

But today is even better because it is Spirit Night for Imogen at  seven Gwinnett Chick-fil-a's! See my last post for all the locations that are in on it. If you're in the area, stop by, grab a bite, and say "Team Imogen!"

Also, we will have t-shirts for sale, too! They're $15 and adorable:

I've had some of you ask how to get a shirt if you're not local. First, let me say thank you for loving an supporting Immy from afar. Second, I can mail you one. Just go to our GoFundMe page, and donate $20 or so to cover post, and leave your address in a private message.

Update time
After a lot of prayer and discussion  with Tam, we have decided to switch oncologists for Immy Claire. With all the uncertainty around the last PET Scan, we reached out to the doctor in Cincinnati to get his input. We feel very good about the decision to change, but there's definitely more concern about the increased counts and size. He has recommended moving up Tiny's next scan date to the beginning of April to see if the score comes back down or continues to climb.

Per his recommendation, we are going to see another oncologist here in GA to see if she is a better fit for us. Fortunately, she has more experience and expertise than our soon-to-be ex-doctors.

Please continue to pray for our wisdom as we navigate this next month. One of the nation's top experts in neuroblastoma just told us on the phone that this is hard to figure out, and it's not an exact science. So pray for peace, for sound judgment, and of course for healing.

Chick-fil-a Spirit Night on March 17 for Imogen

Mark your calendars, folks! We are so blessed by the work of Linda Garner, Cindy Newsome, Robin Mauck, and many others at Chick-fil-a, as SEVEN stores are all sponsoring Immy on St. Patrick's Day, March 17. Basically, eat at one of the stores below from 5-8pm. That's it. Of course, feel free to make a night of it with the family and hang out.  We'll also be selling Team Imogen t-shirts, finally!  They're $15, and we'll sell 'em 'til they're gone.

Print this pic out, share it, and help us spread the word. I'll be getting extra waffle fries.

I got the addresses of each store, too, so pick whichever is most convenient!

Sugarloaf and 316

4965 Sugarloaf Pkwy Lawrenceville, GA 30044

Scenic Highway

1559 Scenic Hwy N Snellville, GA 30078

Lilburn

4801 Lawrenceville Hwy Nw Lilburn, GA 30047

Snellville

2932 Main St W Snellville, GA 30078

 Stone Mountain

5075 Stone Mountain Hwy Stone Mountain, GA

Loganville

4321 Atlanta Hwy Loganville, GA 30052

Dacula

545 Dacula Rd Dacula, GA 30019

Update 3/8

The week of scans is behind us, finally! Imogen did great, and it made a world of difference that we got to use nitrous oxide again before the MRI.

Some updates on her counts:

Catecholamines/Urine counts:
The results from the latest sample was on par with previous results, as her HVA was 24.4 (compared to 24.9 in Feb) and her VMA is 11.3 (Feb was 11.8).  As far as the differences, they're considered the same.  So that's good news.


MRI:
Basically, the MRI looks the same, as far as we can tell. We met with our current oncologist, and he said everything looks stable. From here on out, we will only be getting an MRI in 3 months, unless something changes.

This seems to be really good news, as they're not concerned and the tumor is not spreading anywhere else. We're still a little uncertain because of the difference in the PET scans. The way each one was analyzed was completely different, so it's hard for us to figure out if anything changed. (For instance, this most recent PET noted a higher SUV score–aka malignancy–and seemed to identify it in more places).

Add to that the CUX1 results, and we're daily more aware of what we don't know. See, before, we had no clue either, but we were ignorant of our ignorance. As we progress, we discover more questions that don't seem to have answers.  So pray for wisdom in making choices that aren't black and white. Pray for our decisions with our doctors, and mostly pray for sweet Tiny. Her hair is coming back, and she's starting to talk about being able to put clips and bows on. She seems to be doing so well, and I don't want her to have to go through any unnecessary treatments or scans anymore. But I also know that the right thing to do is seldom the most convenient.

Check back on Monday for an update on the Chick-fil-a spirit night for Imogen on March 17!

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.

Update 1/8 :: Quick Recap from the Urologist

Our visit to the urologist, Dr. Smith, came and went last Friday, without too much to report.  The concern for Imm is that the tumor is all over the kidney and ureter area, in addition to all the spinal stuff.  So, the risk is that a) the tumor is physical obstructing, and/or b)there's nerve damage caused by the tumor or her surgery.

Thankfully, the doctor thinks that there is currently no problem. Right now, we're keeping a record of how often she goes #1 during the day, to see if she's peeing enough.  Sorry, that was so non-medical of me. They want to see if she is *ahem* fully "voiding." 

As we're finding with everything else, it's not an exact science. It depends, of course, on how much water she drinks during the day, and it's different for every kid. That's why they call medicine a practice.  So, the plan right now is to wait until Feb 21, which is the date of our next MRI. They're going to take a few extra pictures/slides of Imogen's kidney while they're imaging the tumor and her spine.

We feel pretty good right now. It's hard to wait and feel like we're doing nothing, and we're not sure if we want to stay with our oncologist. I think she's a capable researcher and doctor, but she's not warm, caring, or invested in us, and Imogen's cancer is not her specialty. Pray for us with that decision.  Also, we are open to your advice and suggestions with this, if any reader has any experience with this kind of thing. Every other cancer parent we've talked to has said, YOU SHOULD LOVE YOUR ONCOLOGIST.  Frankly, we don't.

In happier news, Imogen's head is fuzzier every day. When you go through chemo, your hair won't necessarily grow back with the same color or texture. It's actually one of the fun exciting aspects of recovery.  I'm open to taking bets for the following:

How will Imm's hair grow back?

My guess changes depending on the angle and the day. Yesterday, it looked quite dark. But she's noticing, and is adorable when she talks about it. Tonight, while she was taking a shower, she asked mom for some shampoo, because she said she has hair again; aaand, commence waterworks. I won't forget that moment for a long time.  Here are a couple shots so you can see it!

Update 1/2 :: New

All of us every single year, we're a different person. I don't think we're the same person all our lives.

-Steven Spielberg

I can't tell you how glad I am that I was able to take a break from updating during the holidays.  Not because I don't enjoy writing and sharing, but because there was no emergency or unexpected hospital visit. In fact, it was quite perfect, and an excellent rest.

Imogen and Aaron are covered in dolls and toys and gifts from Christmas, and Tammy and I are scheming and figuring out which toys we can secretly get rid of. We're working on a formula to weigh:

• The amount of joy said toy brings 
• The degree of dependency on mom and dad
• The likelihood of it destroying our house at some point

In other words, goodbye to you, cotton candy machine, and all your sugar-spraying chaos. 

As far as an update, we met with our oncologist for a couple of hours on Monday, to talk about the next year.  We asked questions and entertained what ifs, and some of those were actually answered.  Here's what our 2014 looks like: 

• Tomorrow, we begin our meetings with a urologist to see if there are any issues caused by the tumor.
• In February, we have our next MRI and PET scan. The MRI will be every 3 months, the PET once or twice a year.
• Also, Imogen will be doing her post-chemo echocardiogram. (Chemo can damage your heart; this one will be compared to the baseline we did before chemo to make sure there are no problems)

Celebrate what you want to see more of.

-Tom Peters

2013 was tough. It had an unspeakable amount of blessing, of course, and there's so much to be thankful for. But I don't think it'd surprise you to hear that 2013 was the worst year of our lives, for some obvious reasons, and others that will remain obscured.

But let me put on my philosopher hat for a moment, will you? I really only have one piece of advice: 

Wipe.

In addition to the practical application (which I do encourage for 2014, by the way), I'd encourage it in your relationships. Wipe the slate clean. Be willing to start over. Don't give up on people, and learn to see them the way God sees them.

When I look at 2013, particularly with Imogen, there's plenty I want to leave in the past. Like chemo. No thanks, I'm more than happy to keep that out of our 2014. So, leave your poison in the past. As far as it depends on you, live in peace.

Hat off. Thanks for that. From my family to yours, happy new year. And here are some cute pics of Imm and Aaron over the break.