Update 11/23 - New directions, not done yet.

So, the last few days have been a whirlwind. After being uneasy about the doctors "we're done!" proclamation, we decided to reach out to other physicians for a second opinion.

We're thrilled with being done with chemo, but we know that there's still cancer on Imogen's spine and near one of her kidneys. The problem, obviously, is the tumor's location. Well, besides the fact that it exists at all.

So, we have asked several questions and spoken with our docs and others, and we're going in a new direction. After speaking for awhile with our oncologist on the phone, we decided that a PET scan and a surgical consult is the next step.  Here's why. Upon further review of our MRI with a second radiologist, it seems that the tumor is pressed up next to the ureter, which propels the urine from the kidneys to the bladder.

What this means is that it could continue causing urinary tract infections or other issues.  The general pediatric surgeon at CHOA has looked at the images and said that it might warrant a surgery to remove that part of the tumor, if it's accessible.

So, we're planning to hear from our oncologist and the surgeon on Monday, and we'll go from there. We're still sending our files to surgeons and oncologists across the country, so pray for us the next few days as we learn and decide what to do.

On another note, many of you probably know from my earlier post that we had to go to the ER on Thursday night, as Immy came down with another fever.  After spending a few hours in there, we were sent home late, and were told that it was ok to give Immy Tylenol, because her counts were really good. Like, 10x what they were during chemo.

She has been happy and well this weekend, so far, and is currently sitting with me as I type, asking me to go dance with her instead of "playing on the pum-pooter." I shall oblige.

38.4

A quick update: Imogen spiked another fever last night. Because she still has her port in, we have to go in and get evaluated still. Back to CHOA we went. After spending a couple hours there, Imm's fever still wouldn't budge. Her blood counts came back, and the counts were the best they've been since before chemo started. 

That's good news, but obviously doesn't tell us anything about the fever. After talking with the ER doctor and the on-call oncologist, they gave us Tylenol and sent us home. 

Through the night, the fever has persisted and fluctuated from 101 to 102. They think it's just viral, but say a quick prayer for Immy for the fever to break. 

Update 11/18: Scan results

There's still a lot going on, but I wanted to give you all a quick update from this today:

1. MIBG scan showed less uptake; that means it matured

2. MRI shows little to no shrinkage; so it looks about the same size.

3. No more chemo!!!! They said it does more harm than good at this point.

4. Surgery not really a viable or necessary option right now. More risk than reward.

5. Port coming out soon; hopefully this week.

6. Going into a period of monitoring; MRIs every 3mo.

So, we're glad she's done with chemo. With this kind of cancer, we'll never get the 100% clean bill of health, unless it were healed. So it's hard to have closure with it, because we can't declare "cancer free!" or anything like that.  The only way to know for sure would be to go back in surgically and resect more of the tumor. Not worth it. 

I asked the oncologists if this downgrades the cancer to a ganglioneuroma (benign) from the ganglioneuroblastoma.  They said, yes, in their minds, that's how they're looking at it, but it can't be reclassified as such for sure...unless they went in and took out more. Not worth the risk for a name change, they say.  Agreed. 

So, that's just the details. We're still reacting, obviously, but It's good news. They're not expecting her to have issues, but it all depends on how her body grows and develops. As it stands right now, the chemo wouldn't do any more than it already has, so we're off! 

So, up next is the scheduling of the port/"robot" removal and a few months continued on antibiotics.  Because of the chemo, she's still considered immuno-compromised.  I'll update this post with images as soon as we get them, and I'm sure we'll be posting again once we've processed more.

How to prepare for healing

So, the scans are done, and we're waiting for Monday.  Monday is when we meet with our oncology team, and they're going to tell us what they see, and what they want to do next. There are a few options and scenarios that we have been told could play out.

1. The chemo worked, and the cancer has shrunk (probably means 4 more cycles of chemo)
2. The chemo matured the cancer, but it's still the same size (possibly more chemo, probable surgery)
3. The chemo did nothing noticeable
4. The cancer has spread (unlikely; more chemo at increased doses)
5. It's healed. (that one is ours)

We're praying for healing. We're praying that we walk in on Monday, and they say, "We need to do another scan, because there was either an error with the MRI machine, or it's gone." That's what I feel strongly about praying for. Exactly that. We believe in healing; we've seen and heard miraculous stories of God breaking through, of heaven invading earth at the opportune moment. I know about the different kinds of prayers; I've read Richard Foster and Andrew Murray.

As much as I say we trust Jesus in this, I am finding that I'm quite superstitious. Making sure I pray the right way, hoping I say the right things, making sure I don't offend God while we wait. I'm afraid I'll jinx a healing. Or, if we go into the office and it's the same or worse, that it reflects poorly on us or on God. Maybe it's the desperate need for control; to feel that we can hit the right formula to stir the hand of God.

I realize that I also treat God's presence and His favor as a limited resource. As if, in order to heal Imogen, someone else is ignored. A seventeen year old boy just died from his cancer a couple of days ago in our hospital. What right do I have to ask God to intervene for Imogen? Didn't Brandon's mom pray just as feverishly for her son in his last moments?

I don't understand a lot of this, and I'm learning as we go, but I know God isn't like that. Myself? I can't imagine a more perfect way for God to show Himself than through a miracle, but I've already seen His hand in the midst of sickness. It's as if God said, "I've proved trustworthy up to this point, will you trust me still?" This is probably the most literally that I have understood that "His ways are not our ways." Up is down, cursed is blessed, healing comes from brokenness. We have felt His presence, we've seen His people come to our aid in unbelievable ways. I can feel your prayers from around the world. But it's still a mystery, and it's not easy. So, I don't think faith nullifies preparedness. There's an old proverb that says something like this: The horse is prepared for battle, but victory belongs to the Lord. 

So we're making our plans, but they're surrendered. We're praying for healing, but planning for anything. Thank you for praying with us. And if it's another outcome, pray that we make the right choices moving forward.

Update 11/13 :: One down, one to go

That's Imogen's necklace, her "Beads of Courage," as they're called. Every time she goes through something tough, be it a stay at the hospital, a poke, or chemo, she gets a bead to chronicle her journey. I kind of hate that necklace.  I don't, not really, because it's a reward and a testament, and we'll hold onto it forever. But I can't look at that thing as a dad without my heart breaking at each bead. There's nothing I wouldn't do to undo this for her or take her place.

It's humbling, because I know that we are one of the families in the Aflac center who are better off than many. All of this, both the good and the bad, is humbling. All of this has deepened me. All of this has helped me understand God more. All of this has made me understand God less. And it's ok. We're here. Immy is here. We're ready for what's next.

I'm writing this from home, which is excellent news! We had to miss our Five Spot night on Tuesday because Imm spiked a fever...again.  It went up to 101.9 on Tuesday, and the docs were considering postponing the scans because of it. But the fever dropped (yay!) and we got it. The original plan, as if that's ever existed, was to do all of this outpatient.  With the fever, we were admitted. As a matter of fact, we were admitted into the same room as the first time we were put in the Aflac Center, room 197.

Now, if you're charismatic like me, you've made the connection. Immediately, my prayer was that this first room would be our last room in this story.  We're praying for healing.

Of course, we  won't know anything until next Monday, I believe. We're meeting with our oncologist then to go over the results and talk about the next steps in treatment.  No biggie. 

Anyway, after her nuclear scan today, they decided we could go home and come back for the Friday MRI. That was a huge relief, considering they were ready to give Imogen another platelet infusion yesterday.  But her counts were up, and we were shipped out. 

Thank you to all of you who prayed for Aaron and his rash. It went away overnight, and he is still rash-free! If it comes back, then it's definitely some sort of reaction to food or his environment.

Immy and I while she was coming out of sedation.

What did she want after her scan? A cupcake, is all.

A lot is going on in our calendars and in our minds.  I do hope that I have a chance before Friday to share a bit more.  Thank you again, to all who are sharing and praying. The generosity–and creativity–is unbelievable. And the stories are coming. We just heard today from one of our first nurses, Nancy, that while she was on vacation at the beach, one of you lovely people asked her if she knew about Imogen! So whether you've given us gifts or money, or you've had some frozen yogurt on Immy's behalf, or if you've shared with your Sunday school class a prayer request, THANK YOU. We'll never know some of the conversations and prayers that have taken place on our behalf, but we feel their impact, I promise you. So to all who are near and far, I cannot say thank you enough.

More to come.

Fro-yo, anyone?

Well, it's been quite the weekend. I enjoyed being in New York, but I was ready to be back home. Imogen has been doing really, really well.  We went to the park yesterday to enjoy the sunshine, and let me tell you, that girl will ride a swing for HOURS if you let her.

Aaron, unfortunately, still has that rash. Well, it's not really a rash. Tam took him to the dermatologist, and they actually biopsied it to figure it out. Creams and oatmeal baths aren't doing the trick. It oved from his left eye to his right eye, and now is on his ear and neck, too. Pray for him if you think about it.  We had an AWFUL night of sleep on Saturday because of all this. Thankfully, last night was much better.

A BIG THANK YOU to Carrie Martin and her crew! They raced last weekend, and rode for 32 miles or some ridiculousness. I get tired if I drive for 32 miles, people.  That's impressive.  And thank you to all who partnered with the team to sponsor their miles!

Aaaaaand, if you like frozen yogurt in November like I do, check out this sweet flyer that our friend Sarah made.  She organized a benefit for Immy at Five Spot in Grayson and Snellville tomorrow!

  They're giving 25% of all proceeds from 5-8pm tomorrow at both locations, so I'll see you there. It all fits together to be a pretty huge week.  

Here's the schedule, so far:

Monday

-Maybe taking Aaron back in to dermatologist

-Hearing results of Aaron's biopsy

-Imm has to take iodine drops for her nuclear injection, for the MIBG scan on Wednesday. They are disgusting, and she hates them. Trust me, you do, too.

Tuesday

-Injection. Imm gets the injection 24 hrs before her scan, and her port will be accessed. We're doing all of this outpatient, so pray for no complications or whoopsies while we're home.

-Iodine drops. Really, they're really gross.

Wednesday

-MIBG scan.  We'll get a reading from the results within two days. This scan can pinpoint tumors and tell where it is (or isn't) in the body. It's the one Imogen got a while back to see if the cancer was anywhere else in the body.

-Iodine drops. --shudder--

Thursday

-The calm before the storm.

-Iodine drops. They taste like sour, spicy poops.

Friday

-MRI, and hopefully the MRI results that afternoon.

-iodine drops (last time!); they don't deserve to be capitalized.

Let's do this!

Update 11/8, & Holiday Open House for Imogen!

The last few days have been ludicrous. Imogen has been happy and hasn't been sick for almost a week, so that's been a huge relief. However, her blood counts dropped significantly, so the docs ordered a blood transfusion. She did great.  

New slippers!

The crazy thing has actually been with sweet Aaron. The poor little guy has a rash of some sort that's been spreading on his body. Obviously, that raises our concern for both him and Immy. Fortunately, it doesn't seem like it's spreading to her or us; unfortunately, they're not sure what it is. We have taken him to the pediatrician and a dermatologist, and tomorrow, Aaron has to go in and have parts biopsied so they can be analyzed. It's just something that makes me say, Really?  Is this something we needed? Here's a pic. Notice his eye in this pic (and that is oatmeal on his neck and hair, not anything bad)

Lastly, I wanted to let people in Georgia know of an open house Friday and Saturday at Country Garden Florist near Ronald Reagan and Hwy 29! My dear mother-in-law is a floral designer there, and they are donating 10% of all proceeds for Imm.  It should be a lot of fun, and they've got some freebies for everyone, so stop by Friday or Saturday.

See the flyer below:

Country Garden Florist

3639 Lawrenceville Hwy.

 Lawrenceville GA 30044

(770) 923-0590

http://www.countrygardenflorist.net

"Mr. and Mrs. Passman, we found something"

During our last visit at the hospital, we asked again for the images from the MRIs. (She had two: one post-op, and the original one that found the tumor.)  Well, we got 'em.  It was surreal to look at them again, and an emotional experience to relive it.

Anyway, I wanted to share our "Houston, we have a problem" experience. Maybe they'll connect you to our story more, or maybe they can help someone know what to look for, down the road.  I sincerely hope that no one reading this ever has to see these results for your own children, but if you do, then it's best to know as early as possible.

Original MRI video snapshots:

Side

Top-Bottom

Back-front

They go by really fast, I know, and you may not know what you're looking for.  So, here are the important snapshots, labeled:

Unlabeled:

Update 11/1 : Home, Scans, Spooks

It's kind of fun being at a children's hospital during a holiday. Not more fun than home, but they do a good job at Scottish Rite. We had Halloween parties for three straight days, which was a welcome distraction. 

This cycle/round of chemo went as planned, and Tammy, Imm, and I all went home together on Wednesday. She was pretty excited to go.

*I tried to update as much as possible while at the hospital via Twitter and instagram.  Check the previous post to see the timeline.

And, I missed Aaron. That's one of the hardest things, especially for Tam.  So it was good to be with His Cuteness again. 

From the time we arrived home on Wednesday, Imogen Claire has had several spells of nausea. With the kind of chemicals she received this round, this was to be expected. But it still is hard to watch. Thank God, though: She is taking her medicine, which helps a lot, and she is happy and ready to play shortly after she vomits.

We spoke to the oncologist again, and here's what they're thinking: the chemo may not have shrunk the tumor, but it likely calcified, or matured, the tumor to the point that it's benign.  In a way, that's good and bad news together. Whereas benign is always better than aggressively malignant, it still means they believe the tumor to be wrapped around vital nerves.

We do trust our doctors and believe we're in good hands. We believe in medicine and scientific study. We are preparing for surgical and chemical solutions. But our prayer is for healing. Complete, final restoration. The scans have officially been scheduled for November 13-15.  Immy will get two scans, and MRI and MIBG scan.  The second one is the nuclear scan she got the first time.  So, mark that on your calendars.

We had a lovely Halloween last night.  Imogen was a dragon princess, and Aaron was a robot. It was great to meet a lot of the new neighbors, and we live in a very friendly neighborhood. Of course, it always takes me a minute to realize why they stare, why the other kids wonder if the baldness is part of Immy's costume.  It's like a silent movie Tammy and I get to watch over and over again everywhere we go– the look toward Immy, then to me and Tam, then back to Immy, then it hits them why all of our haircuts are short!  It doesn't really bother me.  I've seen a lot of other people's kids that still aren't half as cute as mine. #sorrynotsorry

By the way, thanks for reading this blog.  I'd probably write it even if you didn't, because it helps me process. But please know that we treasure the feedback, and even knowing that others are listening. I have had this passage quoted to me many, many times during this whole thing, but this was my morning reading yesterday:

Even the darkness will not be dark to you. 

The night will shine like the day, for darkness is as light to you. 

YOU created Imogen's inmost being. YOU knit her together. 

I praise you because Imogen is fearfully and wonderfully made.

AND YOUR WORKS ARE WONDERFUL.

I know that full well. 

Her frame was not hidden from you when she was made in the secret place. 

When she was woven in the depths of the earth, Your eyes saw her unformed body. 

All the days ordained for Imogen were written in Your book before a single one came to be. 

[so, upon seeing God's thoughts toward Imm, what else could my response be but...]

HOW PRECIOUS ARE YOUR THOUGHTS TO ME, OH GOD