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:

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

Live from hospital... or sort of

I will do official updates while we're here, but if you want to stay the most updated, then bookmark this page.  Or check it often.  Or keep it open and stare at it every second...  I'll be posting/tweeting as we learn, experience, and navigate through this round.

We're going to be checking with the doctors to hear more of the medical explanations for what she's going through and what they expect to happen over the next few days and weeks.

Perhaps more importantly, I'll be posting cute photos and other goodies from while we're here.

Tweets by @ajpassman

Update 10/26 :: move

It happened! Rather, it didn't happen. No hospital visits between Rd 3 and 4.  Actually, this is the longest time we've been out of the hospital since we found out about Immy's tumor. Overall, she has felt great and has even been able to be out and about. We noticed she was a little warm tonight, actually, but it hasn't turned into anything.

Some big things have developed over the last week or so:

1. We moved. For the next year, we'll be living in Lilburn aka Thrill-burn. We're renting, which works out perfectly to be close to family, navigate through this with Imogen, and take the pressure off finding the perfect house.
2. My fabulous mother issued an official 30-day prayer challenge via Facebook, as a reminder to pray for Immy every day until her scan, which should be around Nov 15. I'm in. You can join it here.
3. Also, Carrie Martin, a dear friend of ours, is a stud cyclist. She and her team are doing an endurance race of some sort (I'm not a mountain biker, can you tell?) and are looking for sponsors, as they're dedicating each mile to raise funds for Imm! I don't entirely understand, but if you email her at carrie@gfc.tv, she'll explain it. My quads are tight just from the conversation.
4. Thank you for your prayers. I'm so blessed as each one rolls in. It doesn't matter if you're across the street or in Germany, each prayer is precious and saved. If you'd like to send Imm a prayer, it's imogenclairepassman@gmail.com.  I'll share one with you for the next post.
5. I promise, a t-shirt design is coming soon, or details for ordering the shirt you've already seen are coming.

So, we're heading in for Round 4 tomorrow, and if you're just joining us, here's the scoop:

• Round 4 is supposed to be our "halftime" of chemotherapy. The original schedule calls for 8 rounds, with MRIs and body scans scheduled halfway through. Hard to believe it's already upon us, but here we stand. Due to the way Imogen's body has been hit up to this point, the oncologists think that the tumor might have been unaffected by the chemo, so the chemicals just had healthy good cells to attack, out of spite or something. So, the second batch of 4 rounds might not happen. We're praying it's because she'll be healed! The docs are saying because the tumor may be mature (chemo only works on active/malignant cells.)

• Round 4 is supposed to be brutal on Tiny's body. Over the next three days, Imm will take combinations of three medicines. One is new, and the other two have hit her hard in previous rounds. Carboplatin (sp) is the first one, and I remember because it's like reverse carbs for my daughter's energy and appetite. Cytoxin is the other one, and it remember it because IT HAS THE WORD TOXIN IN IT. Anyway, because of the severity of the treatment, they're admitting us through all three days, and Imm will be monitored through the whole round. We'll kick off just after lunch tomorrow, so keep us in mind.

As soon as a get some time at the hospital, I want to share with you the beautiful pictures and videos we have from the past couple of weeks. Until then, thank you for loving and supporting us with your prayers and gifts. In spite of it all, and maybe because of it all, we feel truly blessed.

Update 10/19 :: Picture party

It's been quite a few days since I've posted. Believe me when I say that's GREAT news.

 We're going on days 12-14 from the latest round of treatment. If the first two rounds were anything to go by, I'd be writing this update from the hospital.  I'm at home with Imogen in my lap, so yay!

Here's the latest: no fevers so far.  We just got the latest counts from Imogen's blood counts, and her white counts are very low.  It doesn't mean that we need to go to the hospital, but it means that her little immune system is very vulnerable.

We're in our house hunt frenzy mode.  We didn't find the perfect house in Kirkwood, so we're going to take some time and rent for a bit, most likely in Lilburn.

That's about it for the updates. I am more than happy not to have a lot of medical information to update you on.  I want you to get your money's worth out of this blog, so here you go.  Pics of the kids!

NEXT UPDATE: A lot of you have asked about #TeamImogen shirts, so I'm going to throw out a couple designs, and you can vote on which one we go with!  I think we'll need at least 20 people who want one to make it worth the printing.  Stay tuned.


Created with flickr slideshow.

Update 10/9:: rd 3

I can't emphasize enough how well Imogen has done over these last three days. We still have more to come, but I'm happy to report no sickness, no fevers, and minimal nurse-kickings (only 3!)

Now that round 3 is done, we have our fourth round on Oct. 28. There's been a little bit of a development in the schedule, as well. 

The original plan was to do four rounds, pause for scans and imaging, then four more rounds. Here's what we heard today  out oncologist came in to talk about how tough the last cycle was for Imogen. They expect kids to have a much smoother time on this kind of regiment, meaning one of two things:

1. She's an outlier, and her little body doesn't handle it well. 

2. The tumor is so mature that it can't respond to the chemo, meaning her body is absorbing the full force of the treatment. 

So, they now have serous doubts as to whether we will continue with rounds 5-8. We're not really sure what to hope for, besides this: maybe the meds don't have anything to attack because the tumor has disappeared. 

We're still praying for healing, but we're also preparing for anything. It's hard watching the poison demolish her immune system, and we don't want immy to suffer unnecessarily if the chemo is as ineffective as a Braves player with RISP.* Of course, we don't want a risky surgery, either.  

So join us as we pray for a good report, and that we'll know what to do, come what may. 

We're still in process of moving, so if you and/or a friend can come help Saturday, that'd be a great service to us. 

So, we rejoice that Imm's spirits are up. And her appetite. This was her expression for tonight's late-nite snack. She's giddy for the slice of cheese coming her way. 

*had to [runners in scoring position]

Update 10/6 :: Round 3 tomorrow

Sorry. I've been a bit lax in my updating.  But I'm not really sorry, because there hasn't been much to report!

The last few days have been great.  Imogen has been feeling a lot better since we've been home, with NO FEVER.  Basically, they let us go home because she seemed like she was fine.  And she's been getting her appetite back, too– she eats more spaghetti than I do.  Maybe she's making up for lost time.

One bummer.  Imogen's nose is a bit runny, so I think she may be coming down with a cold. Depending on how she feels in the morning, that could derail the chemo schedule.  It all depends.

So, the next three days will be spent mostly in the hospital.  We'll go in tomorrow and stay the night for Day 1, then start on Day 2 first thing Tuesday.  How she's responding will determine whether we go home Tuesday.  Either way, we have Day 3 on Wednesday, which should only take an hour because that day's meds don't require hydration.  

In addition to all this, we are praying that this chemo is actually doing something to the tumor. We have this round and another in three weeks' time, then we will do more body scans to get a look.  I would hate it if she's been through all this, and the tumor is too mature to respond to the chemo. And by respond, I mean die.  I want it to die. 

In other news, we're getting into crunch time at the house. Many have offered to help, and thank you to the ladies who have come already to box stuff up. For anyone with an average amount of muscles, we'll be clearing out the rest of the garage and basement on Saturday, starting at 9am.  I'll buy you pizza.  Oh, and by muscles, I mean arms. 

One cool thing: I updated my phone, and I didn't check Imogen's inbox for a couple of days.  I can't explain the gratitude I had for you all when I checked it and saw 63 unread emails.  The prayers you are writing to Imogen are not merely sweet wishes and kind thoughts toward her; they are the embodiment of hope and encouragement to us.  So thank you.  If you'd like to email Imogen and let her know you're praying for her, we really do appreciate and cherish them: imogenclairepassman@gmail.com.

Here's Immy eating a bagel today:

Tammy and Aaron NOT doing something illegal:

A cheeky Aaron:

And Imogen being beautiful: