Monday, September 30, 2013
Update 9/30 :: Redman, Houses, and Poop
Saturday, September 28, 2013
Update 9/28 :: new robot
I'll keep updating as we know more.
Friday, September 27, 2013
Update 9/27 :: Don't make plans for the weekend
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.
Thursday, September 26, 2013
Update 9/26 - Monitoring
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 |
Wednesday, September 25, 2013
Back to the hospital
Tuesday, September 24, 2013
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.
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.
Monday, September 23, 2013
Update 9/23 :: pizza, pizza!
Wednesday, September 18, 2013
Update 9/18
Tuesday, September 17, 2013
Quick Update :: Readmitted for nausea
I'll update more soon, but I wanted to give a quick heads up and a request for prayer for little Imm. Yesterday was a pretty intense day of chemo, with a couple new drugs and things happening in quick succession.
After arriving home, Imogen began vomiting, and the anti-nausea medicine we were given (Zofran) wasn't really working. So we took Imogen back to CHOA, where they gave her new stuff (Adavan?) that seemed to do the trick. She slept for the rest of the night.
Everything seems to be ok, but they wanted us to bring her in so Imogen wouldn't get dehydrated. With this batch of chemo, her blatter could be at risk of infection if she did get dehydrated. We're good for now, I think.
Pray for the medicine to work and for these next three weeks to go more smoothly than the doctors expect. Again, this round is way more intense, so they expect her to be a lot more achey and sluggish as her counts dip low.
Sunday, September 15, 2013
Update 9/15 :: tomorrow, tomorrow
"Daddy, do you like my haircut?"
She's been asking me that lately. Of course, I think she looks beautiful. But I have found myself messing with it and obsessing over the little white hairs that go everywhere and at different lengths, and thinking that I need to cut it so it looks better. I can't help it. Maybe it's part of adjusting. Maybe it has more to do with my own insecurities.
The thing is, I actually think she is pretty cute with no hair. It's just so, you know, cancer. Earlier today, though, Imm was hiding under the big armoire that holds all the toys. It was one of those times where she got herself in, but couldn't get out. I moved some toys out of the way and helped her keep her head down as she crawled, and I was overwhelmed with love and adoration for this big, beautiful, bald head that was coming right at me. She loves her haircut and think it's just great that a) some other little girl is apparently borrowing it, and b) because it matches daddy's haircut.
In case you haven't seen, Tam also took hers down and got a smokin' hot pixie cut. (Thanks, Robin!)
[if you're on Instagram, I'd recommend following tammypassman and ajpassman. We actually do mini-updates on there throughout the day.]
Tomorrow we go in for Round 2 of chemotherapy. This cycle is only one day, so hopefully we'll be home morrow night. Pray for our rest, pray for great-grandma, who is in town and is watching the monster sweet Aaron.
We have other big news, because life has a habit of moving right along. No, we're not pregnant. But our house is under contract! It's a long story, the timing is crazy, and it's bittersweet, but we're excited about where the Lord has us going. We don't know where that is, but it's exciting nonetheless. We had our inspection on Friday, so we're hoping that went well.
Thank you all for the kind offers to help. Again, I apologize to anyone I have not replied to yet; I will. I'd love to post every meal, every gift we've received and shout your names from the rooftops, but that's not everyone's style. And I'd undoubtedly leave some out.
As soon as I get time, I have a couple stories from our first stay that I really want to share with you. I learned and felt a lot during that time, and it's cathartic to get it out there.
A quick reminder for those who are local: pizza night at Johnny's Pizza in Grayson and Lawrenceville on Monday 9/23. It's a night for Imogen, and I'm mostly excited about getting my face painted by the clown.
And now, cute pictures of the kids from today!
Wednesday, September 11, 2013
Update 9/11: leaving to come back again
Before we went home,though, another couple of folks were added to the no-hair club. Jon & Amy brought us dinner, and just happened to have some clippers with them. I thought it was a #3 buzz I was getting. Turned out to be a #1. Jon also joined in on the fun. Imogen even got to do some of the cutting! Pics are below.
Once again, we've been blessed beyond comprehension by the offers of support and love. I promise we have read every single word of kindness, even if I haven't yet had a chance to respond. And thanks to the army of mommas who have offered to watch Aaron at a moment's notice.
Remember Mon. 9/23, is Imogen night at Johnny's Pizza in Grayson and Lawrenceville. It will be a blast.
Monday is Round 2 of chemo. Keep us in your prayers.
Continue to pray for Imogen's walking to be restored.
Continue to pray for complete healing and for the tumor to disappear (even if you're not into that sort of thing). I get caught up in the day-to-day battles sometimes and realize that my expectations and hopes shift and diminish. Until it's gone, I'm praying for healing.
It's ok if you've butchered Imogen's name up to this point. Lots of people do. We expected that, which is why we gave her Claire as a middle name, in case she ever tires of her parents' decision to give her an old Gaelic name while living in the South. For your consideration, there's no e at the end, and it's pronounced IMM-oh-jenn. That is all.
Tuesday, September 10, 2013
Update 9/10 No.2: #WhoNeedsHair
They are keeping us at the hospital through the night to continue to monitor Imm, but everything is looking good. No fever today, and her counts appear to be on the up and up. All great news. No bacteria on her port, either! Thank you all!
I was asked for the link to the GoFundMe site my classmates made, so here it is: http://www.gofundme.com/47bl0c
The biggest news for today is that Imm's hair is pretty much gone now. We were so thankful for the cute little bob Robin gave her, but even it was getting a little unwieldy. So off it came. And, I have to say, she looks awesome. Like, legit cutie. So cute that mom and I only got sobby once or twice.
If you've seen the #ImogenClaireNeedsPrayer around, I had an irreverent thought to change it to #ImogenClaireNeedsHair and see if anyone noticed. Too soon, according to my better, more tactful half.
Ok, that's it for now. Hoping to head home tomorrow! Thanks for the prayers! God is good. Oh, and shout out to Papa Tom, who already joined the hairless club today.
Update 9/10 - Fevers, cultures, and hospitals, oh my!
In case I haven't mentioned it, fevers can be very dangerous during cancer treatment. A fever of 100.5 for more than two hours means come to the ER. It can be nothing, or it can be a life-threatening infection or reaction. Given those two extremes, they play it pretty safe around here.
So we came in and were admitted for the night. Thanks to those who knew and prayed for us, because the fever broke soon after we were here, and Imogen ate and slept wonderfully–though mom and dad were a different story...
We just got her blood draw results back, and they are pretty low. Not alarmingly low for day#15 after chemotherapy, and not low enough to warrant a transfusion, but low enough to keep us here for another night. So, we're back at our second home for the time being. She'll need another set of labs to get her counts tonight to see if they're back on the rise.
Things to pray for:
1. Pray that there is no bacteria on her port, which is often the cause of fevers. She's on antibiotics right now.
2. Pray for the urine culture we have to get. It will be unpleasant.
3. Pray for Imogen's platelets and some other things I can't pronounce to go up. If they go up, we go home.
A couple other updates:
Imogen's hair will be gone this weekend. It's coming out in huge clumps now. We had our photo shoot yesterday with Paige Knudson, and it was Uh-mazing. And it was perfect timing. Check out a little sneak-peak she posted on Facebook (I put a couple at the end of this post, too).
Some of my friends from my MBA program at UGA set up a donation site for us. We didn't even know it went up. It's weird to ask for help, so I don't like to do it. Well, they kinda did it for me. To all my classmates and others who have donated so far, thank you guys! And thanks Mary Catherine for setting it up.
If you live in Gwinnett, mark your calendars for PIZZA on Monday, Sept 23. In honor of Childhood Cancer Awareness Month, Johnny's Pizza in Grayson and Lawrenceville is having a fundraiser night for us. Big thanks to Kari and Sarah for setting that up, and to Matthew Shelnut and his crew at both locations for their generosity. Spread the word! Oh, and the Grayson location has Twinklz the clown who will do free face painting and balloon animals. Should be a great time for families!
Sunday, September 8, 2013
"This is our life" –Update 9/8
It's been a great week at home, really. Imogen has done better with her walking, and this is the first sniff of a fever we've had. We're still in for a dog, but that didn't stop Imogen and Aaron from loving the snakes and lizards at the pet store.
The biggest thing of note is that Imogen's hair has started falling out in the last few days. And it's going quicker than we realized. Imogen, always the generous one, has liked the idea of another little girl needing to "borrow" her hair for a little while (and someone needs to borrow mine, too.) Today, it started coming out at the slightest touches. So, our schedules change again. A family photo shoot that was scheduled for next weekend is now tomorrow morning at 9am. She probably won't have much by Friday.
One fun upside is we got to get her a a sassy haircut before it all goes. We weren't planning to do it so soon, but it was everywhere: in her face, on the floor, all over our clothes. We went with a posh reverse bob, and I think it fits her personality quite well.
Thursday, September 5, 2013
Throwback Post - Our first few days
There's a ton that happened while at the hospital that I'm still processing and want to share, so I figured I'd do my first one in honor of #tbt.
Before we knew about the tumor, before we knew it was cancer, before we knew we'd be living at the hospital for a stretch, one of our first visits came from our lovely friends Jon and Amy. It was a great visit, and they asked if we wanted/needed anything. It would not be the last time we heard that question. But I jokingly said that Imogen would like a singing performance.
Later that evening, this pops up on our phone:
Tuesday, September 3, 2013
Psalm 61
Give heed to my prayer.
2 From the end of the earth I call to You when my heart is faint;
Lead me to the rock that is higher than I.
3 For You have been a refuge for me,
A tower of strength against the enemy.
4 Let me dwell in Your tent forever;
Let me take refuge in the shelter of Your wings. Selah.
You have given me the inheritance of those who fear Your name.
6 You will prolong the king’s life;
His years will be as many generations.
7 He will abide before God forever;
Appoint lovingkindness and truth that they may preserve him.
8 So I will sing praise to Your name forever,
That I may pay my vows day by day.
Monday, September 2, 2013
Update 9/2: Walking Together
I went back to work on Friday, and I must say I didn't get too much done. It was great to see all my coworkers who have been praying for us for the last couple of weeks. The funny thing is, everyone was wearing yellow shirts, even on a video conference call I had with the lovely folks at Hampton Creative. I had no idea why, until my bossman Steve informed me that yellow is the official color of pediatric cancer. Probably something I should've known. Anyway, blown away by that, and I continue to be floored by the support, prayers and help from family and friends.
I am loving the prayers that have been sent so far to imogenclairepassman@gmail.com. So great to read, and I can only imagine what it will be like for Imm to read them later. Keep 'em coming!
The weekend has been a whirlwind. A good one. Imogen has done incredibly well since we got home. She hasn't gotten sick yet, no fevers, and she has been walking more and more. There's still a pronounced limp, but she is now walking on her own (and is very proud of herself, as you can imagine.) She even went down the slide by herself. We definitely still have a long road with her legs, and we're trusting she'll regain full functionality.
Speaking of that, Imogen's great grandma and her friends up in Ohio are all wearing pretty pink bracelets for Imm, there might be an Imogen night at one of our favorite pizza joints soon, and our house is overrun with bunnies, bears, princess books and all other sorts of stuffed lovelies.
There's something about being home. We decided that the wheelchair isn't even allowed inside the house, and that has surely paid off. Aaron is as active and hungry as ever, and I believe that he's helped Imogen settle in even more by taking away some of the attention.
A couple of quick things to note:
1. For those who were interested in bringing us meals and run errands, THANK YOU THANK YOU! We're finding out that the day can get away from you with all this going on, and it's taking time to settle back into any semblance of normalcy. We still have no idea how to ask for or even organize the things we need, but it's a great problem to have!
2. For those who are constantly praying for us, THANK YOU THANK YOU! I'd ask that you add a couple people we are praying for. A couple days before Imogen went to the hospital, we found out our neighbor Jill was also diagnosed with cancer. Crazy timing, I know. Please pray for her and her family as well. Also, my coworker Caleb has had a crazy couple of weeks, as his beautiful daughter Leena was diagnosed with diabetes. She's close to Imogen's age, and I know it's a huge life shift for them.
3. Tammy is awesome. Before we went to the hospital, our kitchen was getting some repairs and upgrades, so a lot was unfinished. Yesterday, Tammy finished the backsplash grouting completely on her own. Mad skills.
4. We like visitors, and we really like visitors who give us a heads up. :) Everyone's been great so far, so don't be scared of seeing us. I'll tell you if you should come by later, believe me.
5. Our routine is beginning. This week, Imm will have her first weekly blood draw, and her second round of chemo is in two weeks. We're hitting the days where she could still feel the chemo hit her, so pray for strength and no fevers!
Also, I hear that September is Childhood Cancer Awareness month. Go figure. I think we can all agree that I'm very aware of it already. That's about it. Hoping to post some stories and memories from our time at CHOA in the next couple of days. These last two weeks have been the hardest of my life, but they've also been my proudest. Proud of my family, proud of my friends. There is truly a peace and a joy that doesn't make sense without Jesus. There's nothing better than waking up with hope and seeing His hand in so many situations. More on that later. For now, I need to go to the store to get milk, and maybe some shirts in my new favorite color.
Slide buddies |
Princess story time |
Loved our visit from Sarah and her mom Kari |