Update 9/30 :: Redman, Houses, and Poop

A LOT has happened in the last two days. After the blood transfusion, Imogen's H&H counts (red blood cells and whatnot) went up to a good point, but she was still having fevers. So, her antibiotic was switched from Zosin to Vancomisin (aka Vanc).

For the record, I neither know nor care how these are actually spelled.

I had actually stepped away for a little bit to take care of some househunting (more on that later).  When I got back to the Aflac ward, I heard screaming coming from down the hall. It was unmistakably my Immy. As I threw the door open, I saw Imogen, as red as a strawberry.  Tammy and the nurse were trying to get her to take some medicine, but she was screaming and clawing at her own skin. It was possibly the saddest moment of this whole experience for me.

The medicine they were trying to give Imogen was Benadryl. It turns out that she had a reaction to the Vanc. Rather, it was a side effect known as "redman syndrome" that can happen to people taking the antibiotic.  The skin gets bright red (duh), and the patient gets itchy all over.  Fortunately, we were able to get Imm to swallow the Benadryl, and the itching and redness subsided. 

I undestand why they call us "patients" now. So much of this has been a process of waiting on medicine to kick in, waiting on temperatures to drop, waiting on the Lord to see how and where He shows Himself faithful.

The next morning (Sunday), Imm's blood cultures came back again negative for bacteria (yay), but her platelet count was less than 10. For reference, you and I are considered in the low range if we have a score of 140.  

So, we got a platelet infusion, which looks like grapefruit juice, in case you were wondering. We found out this morning that they helped her counts a lot, and she's back in a "normal" range– not you and me normal; cancer-normal– for those.  The tests are still coming back negative for bacterial infections, so it looks like a random virus that is just playing itself out. She has to be fever-free for 24 hours before they'll let Imogen go home. 

Today has been a pretty nice day. It feels like we're finally getting our Immy Claire back. She has an appetite, she's walking around the hospital, and SHE FINALLY POOPED. That was a minor, but constant, concern for the last six days. 

IN OTHER NEWS!!! We did sell our house. Everything is moving along swimmingly with that, but that means we're trying to find a house. We believe God sent us a buyer at the right time, and we believe (aka desperately hope) that the same will be true of where we're supposed to go next. In fact, maybe you know someone in the Kirkwood/Decatur area that is selling or would rent their house. In case you do, we're looking for something that is either newer or updated (old stuff + cancer is not a great mix):

1. City schools of Decatur is our dream from heaven; but nice parts of kirkwood will do, too. :)

2. 3+ bedrooms

3. Decent yard space for playing

4. Swim/tennis?

It might even be a solution for a few months or a year.  Anyway, email me at ajpassman@gmail.com if you know of anyone who has lived in their house in Oakhurst for 50 years, and wants to almost give it away!  (or anything else you may know of)

Thanks again! I'll try to update in the morning.  We should be just monitoring her as she plays, and hoping for no fevers, as that would reset our 24-hour clock for staying admitted.

Oh, as a final thing: we went outside yesterday to have a little picnic.  Can you tell from my photo stream I thought she looked cute?

Update 9/28 :: new robot

So last night was a little bit rough again, mainly because Imm's fever kept coming back every couple hours.

You may remember me writing about her port—"robot"—giving us some trouble. Well, Imogen started complaining again during the most basic of checks. For some kids, it's normal, but she's never had an issue with antibiotics going in or the line getting flushed. So, we asked them to get her a new "tail." It was not a pleasant experience, to be sure, but we noticed an improvement right away. It looks like there was a very slow leak that stung every time something went in.

Imogen's blood counts dropped again, so they're giving her a transfusion now, and monitoring her platelets and fever. We'll be here at least through tomorrow. If her fever persists, they might start getting more aggressive with it on Monday, with different medicines and body scans. The hope here is that her counts will go back up, which should boost her immune system, which should stop the fevers.
I'll keep updating as we know more.

Update 9/27 :: Don't make plans for the weekend

UPDATE 4pm: ok folks, we need some prayer. Imogen's fever has jumped up to 104. They don't want to give her Motrin because it decimates her cell counts, so we're in rock-and-hard-place mode. We need this fever to drop.

Last night, we had a little bit of an episode, and Imogen's fever went pretty high again.  At around 4am, the nurse came in to get blood cultures. They can often do it without her even waking up, but she woke up pretty ticked.  She cried a bit and vomited, saying that it was hurting her, that her stomach was hurting her.  Part of the problem was the time in the morning, but she was pretty hot as well.

The rest of the night, or what was left of it, went well.  Her fever broke and has not come back, and it looks like neither a blood nor platelet transfusion is necessary at this time!  While that's great news, it doesn't mean we get to leave quite yet.

The cultures still came back negative for bacterial infection, but Imm's white blood cell counts are very, very low. The plan moving forward is that we will be here until Saturday, maybe Sunday, as Imogen is monitored. Basically, we don't get to go home until Imm's counts go back up.  And until that time, she is prone to fevers.

Thanks again for the prayers. She has had a pretty wonderful morning, actually.  She had a craving for strawberry yogurt, and has been playing with dolls and crafts since then.  We're just watching and waiting.  Pray that her counts bounce back, and she doesn't get fevers along the way.

Update 9/26 - Monitoring

Imogen's fever is a bit back and forth, but she is on some antibiotics, and seems to be doing well.  As expected, her counts are low, particularly the white blood cells. They're still thinking the counts could drop more as the day goes on, so there's a chance we'll be operating out of the hospital for the next day or so.

We're not worried right now. Imm is sleeping on mom, dad goes back to work for a bit. We're just waiting to get more information from the tests and get moved over to the Aflac center (cancer city).

Thanks for praying! I will update this post throughout the day.

UPDATE 10:45a: Imm ate a bit, but fever still spiking, as high as 102.5º.  Imogen has said a couple of times that her leg hurts. Once about the right, a couple times for the left leg. Leg + fever is a bit confusing; it could be the tumor moving along nerves, or it could mean something completely different. Hard to tell. We're waiting on the cultures to see if there's any bacteria in her system.

UPDATE 4:30p: Once again, we've been pretty up and down with fever. It went all the way up to 103º this time, but Imogen seems to be doing ok now. The results came back negative for bacteria, which is excellent news.  Because "apparently in the medicine community, negative means good."

One quick scare we had was with Imm's port. The needle got a little dislodged, and the fluids were pooling up underneath her skin.  The nurses were going to have to deaccess, then reaccess her again to get it flowing correctly.  It's not a painful thing, but imagine being three years old with that going on. Thankfully, they were able to get it corrected by doing the medical equivalent of jiggling the handle, and all seems to be well on that front.

The biggest bits of news are that we will be sleeping here again tonight, [a room opened up in cancer city, praise the Lord] and Imm will need a blood transfusion to get her counts to bounce back. Pretty simple, actually. They just hang up a bag of blood, and faster than you can say Edward Cullen, she perks up and feels better.  Hopefully.

sleeping

Back to the hospital

Quick update. Imm spiked a fever this afternoon, and it persisted into the evening. We called the hotline, and we're going in for the night.  

We're not thinking it's serious at this point. Just one of those things we have to do, and it's Day 10 after her last round of chemo, so we're expecting her counts to be low.

We definitely appreciate your prayers. 

Update 9/24

 If you took any pictures at Johnny's Pizza, please email them! And if you're praying for Immy, send her an email at imogenclairepassman@gmail.com, even if you don't know us at all. I have plans for these, and I'd love for anyone who has been keeping up with us to be included. Also, I've heard a few people might be interested for a Team Imogen shirt. Yes? More on that later. 

The pizza night with Johnny's was a huge success! Imogen and Aaron had a blast, kids were getting faces painted, balloons were popping left and right. We can't thank Sarah and Kari and the team at Johnny's enough for making it special. The best way I can sum it up is by telling you what I heard to be true: in Lawrenceville, you guys made Johnny's run out of food before 9pm. Here's what Grayson looked like:

That's bonkers. Thank you all who came out, even if we didn't get a chance to hang out. The greatest joy for me was seeing so many people from the pieces of my own story gathered in one place for a unified purpose. I was truly blessed by each and every person's presence. Thank you from the bottom of my heart. 

In other news:

We've had a wonderful Friday thru today, as far as Imm's health is concerned. She's been playing, laughing, telling jokes. The weather is gorgeous, and she has tons of energy. And an appetite for pizza and cheese. Aaron is as cute as ever, and weighs as much as me now. Imm felt good enough to go to the mall, so we rode the merry go round. Aaron screamed with joy the whole time. Screamed, y'all. 

Physical therapy is going really well. Jeff, Imogen's therapist, says she is making huge strides (literally?) and believes that we're doing the right things to help her at home (whew). Imogen's progress is not without attitude, of course. "She is very sassy and independent," says Jeff. We know, and we wouldn't have it any other way. He only thinks she'll need to go a few more times because she's making enough progress at home. 

Many have asked details about our treatment, so here's the latest schedule:

Oct 7,8,9- chemo round 3

Oct 28,29, 30 - chemo round 4

Nov 15. Re-scan, MRI

So, she has six more to go before we hit the pause button and do some re-imaging. After that, the white coats have another batch of 4 cycles tentatively scheduled. A bit of a coin flip, because we'll have to see what the scans look like. As far as the chemo goes, we'll be admitted overnight to the hospital on oct 7 and Oct 28, as the first day is a little more intense, and Imogen will need to be monitored. We will go home on Tuesday and come back for an hour on Wednesday. That's how both remaining rounds should go. 

In other other news, we are under contract for our house. Inspections have been completed, and we officially close late October. For so many of you who have offered to help us in so many ways, here's where we might take you up on it. Stay tuned for a couple Saturdays where we'll need trucks and help dumping and goodwilling stuff. 

That's it for now. Let the cuteness reign. 

Update 9/23 :: pizza, pizza!

So Immy had a great weekend! After her last round of chemo, she was pretty sick for the next few days. For me, it was one of those times where we really felt like this is the real deal. Maybe even more than the hair, actually.

After a few days, though, Imm's appetite and energy came back, and she didn't get sick again on Saturday or Sunday. Yay!

Quick reminder: tonight is pizza night at Johnny's Pizza in Grayson and Lawrenceville! Tell your friends, see you there!