Result

Nothing new, thankfully. Josiah's hearing is still unaffected.

His tumor is still stable. The doctors reminded us that the purpose of Josiah's chemo treatment is to just keep the tumor from growing. So, chemo is working. The ventricles in Josiah's brain have shrunk a little bit in size, but they will always be a little bigger than the average person's. The fluid collection that caused Josiah's last surgery in October is a little better.

We have a couple appointments tomorrow and a kidney function test on Thursday. We'll celebrate the New Year and get chemo 10 on Monday.

Please pray for families in distress tonight. The owner of the company Stephen works for passed away unexpectedly today. Pray comfort for his wife and daughter.

Goodnight.

MRI

Man, it feels like forever since I've written. Stephen's been picking up my slack :).

Christmas already seems so long ago. We were able to visit with each of our parents, but not all the aunts and uncles. That was pretty difficult for me, but we just couldn't make it to every family function. I guess that's the only 'downside' of having most of the family in the same city. That just means we'll have a lot of house calls to make after this next round of chemo!

Josiah wasn't feeling good today so Stephen stayed home with him while I went to Redeemer. We were afraid he might be getting the bug we had last week, but he's kept everything down since 4:00 this afternoon. Thankfully, since he'll be NPO for his MRI tomorrow anyway we didn't have to reschedule. We just want tomorrow to be over-- whatever news it brings. I'm fine for most of the three months between scans save the three/four days right before, and this is the most anxious I've been since May. The further we get into treatment the more desperately I want to see chemo making a difference.

Pray:
...Josiah will do well with anesthesia tomorrow, and that he'll wake up nicely (he was pretty groggy last time.
...Stephen and I will sleep soundly tonight.
...for my heart to feel the Lord's perfect love that casts out fear.

Merry Christmas!

Long Week

Since Josiah's been sick, Merri and I really haven't been too concerned about our own health. This week, we learned that's not a great idea. I was sick all weekend with a stomach bug (and am still down for the count), and Merri was sick Monday night, but is feeling better. Thankfully, Josiah hasn't gotten it. Merri's mom came over yesterday and took care of everything so Merri could rest — Thank you!

Also on our plates is car trouble. The transmission pooped out on my Civic, and we were scrambling to get it fixed. Silly us — we should have known God would provide. This time, it was through our wonderful, delightful, supportive and amazing church, Redeemer. Once again, you guys have taken care of something we couldn't. Thank you — we really can't say that enough.

We're so glad that Josiah is healthy enough to see people over Christmas. He'll be making the rounds, keep your eyes open!

In the Clear

Josiah had some X-Rays today of his shunt to see what was going on. The X-Rays looked good, and Josiah is doing much better, so they think it was a temporary thing. We're going to keep an eye on him this weekend, but things to have settled down for now.

Limbo

Last night we took Josiah to the medicine room because he just wasn't acting himself. There are four or five things that always tip us off that his shunt is acting up, and right now he's exhibiting three/four of those symptoms. They told us to watch him today and if he doesn't seem to get better we'll take him in Friday. So far, he's about the same.

Stephen and I were joking last night, even though it's not really funny, that it's time for another surgery. Since May it has been 8-10 weeks between surgeries. October 12 was his last shunt revision so that makes this week 9. Right on time. Who'd have thought brain surgery could be so predictable?

Pray for Josiah's counts to be stable for surgery if that's what's on the books for this weekend.
Pray for our little friends at St Jude, in Florida, and back at their home.
Pray for Stephen and I-- We're a little frazzled with this and some unexpected car trouble coming at the same time.

Thank God, Josiah's Gtube site is looking much better without antibiotics!

Monday

Sorry, I can't think of any interesting titles today.

We had counts done today and he's starting to fall, of course. We go back Wednesday instead of Thursday because his RBC are pretty close to the lower limit, and he'll be needing a transfusion.

Pray against infection for his little MIC-KEY button (Gtube site). Yesterday he screamed when I was doing some tummy exercises with him. We were afraid it might be infected, but he hasn't had a fever and the doctors said it's okay. We just have to keep it extra clean and put this special cloth that creates a barrier against infection around the site.

Josiah is keeping to his post-chemo diet of bread and yogurt-- mostly bread. He doesn't have much of an appetite for that either though. Pray he can get lots of good rest so that his body can recover in time for holiday fun.

Slow Weekend

Hey Gang —

We've had a pretty boring weekend, which has been great. Josiah's starting to feel crummy, but is hanging in there. He's gotten very good at getting around in his walker. One minute, he's in the living room, the next, the hall! We've had to re-arrange some stuff so he doesn't pull anything heavy down on himself.

This week, Josiah will have some blood work and spend most of his time recovering from chemo. He hasn't been sick to his stomach yet, which is great.

A new thing has started with him, though... hair. For real. For those of you who have met Josiah, you know he's bald. Bowling ball bald. Well, he has fuzz all over his head now. It's real light and real fine, but it's there. We're hoping it will last, despite the chemo. I keep telling Merri she needs to go the combover route with him, but she doesn't listen to me when it comes to good ideas. Silly girl.

Chemo 9

Nothing to report, thankfully. They let us go home as soon as chemo was finished last night. So we only had to stay one night inpatient. It was a very nice surprise! Josiah has been sleepy today, but that could be because he screamed and jumped up and down most of yesterday. Josh and Mary, we've never even seen him act like that.

No runny nose, no fever, no vomit [yet]. Thank you for praying for him and us. We've got one appointment and a Target sponsored Christmas party at the hospital today.

Friday we have a medicine room appointment for Josiah to get this new kind of shot that works like a GCSF (filgrastim) shot, but it'll stay in his system meaning he'll get one shot from someone else as opposed to 8-10 shots from us til counts come up. I'm very, very excited. They haven't even published the study on this med in children-- it has only been used in adults in the past. But St. Jude doctors did all the research and they wouldn't offer it if it weren't safe. I forget sometimes that the care that Josiah receives is truly the newest/best medical technology available. Or like this, not even available to public hospitals yet. Did I mention St Jude covers all costs? Amazing. Thank you for donating to St. Jude in honor of Josiah's birthday last month and thank you St. Jude Heroes for your efforts for St. Jude.

Merry Christmas!

Over the Hump

We made it! We're over halfway done with chemo as Josiah is getting the first part of round 9 right now. This is the first time he's gotten chemo before bedtime. Hopefully the Benadryl won't cause him to sleep right through dinner tonight. We had to be up at St. Jude at 7:15 this morning so the poor man was wiped out by lunchtime today. He's making up for missed naps now.

I just need to tell you how proud we are of Josiah. Every new challenge they give him in OT he masters in just a few sessions. It's as if he's anticipating what they want him to learn to do and he just does it! He is starting to grasp with his left hand no matter how high above his head you put the object. He will 'point' with his left arm voluntarily (he used to only if you were restraining his right arm)! Watching him work with Mrs. Jess his OT just made me well up with pride. So our 13 month old can't crawl or walk-- he is still just as smart and mischievous as the next kid.

Thanks to GoJGo runners!! I hope each of you had a clean, fun run. I was happily surprised to literally, run into a some of you on Saturday. Dyane had a great idea to put whatever race pictures we have together for everyone to see. Not sure of the best way to compile them, but I'm sure we can flickr something together. I'll be emailing as soon as I get my iphoto library back.

Thanks to everyone who cheered us on! I felt famous there for a few hours. As Stephen already said, there were several people with GoJGo signs and shirts we didn't even recognize! Thank you, too, to Aunt Kathy's team who also ran in honor of Josiah. I let him play with the red sign and I think it made him feel very special.

I'll let you know how chemo goes. Ojalá, counts will fall and be back up just a day or two before Christmas. We hope to get some more good time with the families.

As always, pray against infection, against fear, and against lies that come from us being fearful. MRI is scheduled for December 28th. Josiah will als0 have hearing and kidney function tests, but we don't know when yet. Pray for families enjoying a few more sweet days with their children here.

Love,
merri

Champs

I just wanted to thank all of you who ran in, raised money for, or volunteered at the St. Jude Marathon today. You guys are awesome — I saw so many Go J Go shirts on people I don't even know! Thanks!

Extra Extra...

I feel like I just have a lot of 'headlines' to write but not enough about any one thing to write a whole article. Hope you can follow me though this:

We're all doing well. I can't think about anything right now besides the run tomorrow! If you need a place to cheer Josiah will be at his lady-friend's (not girlfriend, Frazer-- don't be nervous) house at 1781 N Parkway (at the corner of Hawthorne). Thanks, Gieselmann's for opening up your front yard! Be sure to park on the north side of North Parkway so you don't get trapped with all the street closings. I'm told there will be a fire pit. That and getting to watch helpless runners pant their way down the road should be enough to entice you out. The 1/2 and full marathon start at 8:00 and the Gieselmann's is at mile 7/22.

There's still time to donate to GoJGo @ https://waystohelp.stjude.org/sjVPortal/public/search/displayEBUserSearchPage.do?sectionStyle=subMenuTwo&eventId=55854&programId=401
Josiah's team has raised $8,852 for St. Jude! This is already way more than we anticipated! Thank you, all who've already donated.

This next link is for those of you who've asked about prints from Lisa's beautiful photographs of Josiah. Go to http://kiralisa.com/Hackett and email her with the number in the photo title that you would like a print of. Do not use the number of the photo in the slide show. Her email address is in the top right area of the gallery.

Hope to see you tomorrow at the race! Even more, I hope to recognize you through my exhaustion and delirium. Thanks again to everyone who's bought shirts as well. We still have some left so get your Christmas-support-St.-Jude shopping done @ http//forkbombr.net/gojgoshirts

Love,
Merri

RO

Sorry to leave you hanging. We've been busy all day, and every time I thought about updating I wasn't near the computer.

So the meeting went well Monday. I'll just hit the high points of the conversation, because much of what Dr. Merchant talked with us about depends on Josiah's tumor. Right now, Josiah does not qualify for the proton beam radiation. The benefit with the type/location of his tumor would be only marginal. Good to know: If he gets radiation it will be here at St. Jude. We will not immediately start radiation after chemo unless it shows signs of progression. Even then, they may decide it's better to try another chemo treatment before radiation. The older Josiah is the less dramatic the side affects of radiation will be. The biggest risks for Josiah are deafness and hormone problems because of where his tumor is. His ability to learn may be a little slow, but that part of the brain will not receive direct radiation.

So for now, we have to just get through the 16 rounds (7 left after next week). Then there will be a waiting period of a few months to monitor it.

Tomorrow we have appointments and then we're done for the week!! (Godwilling). Then we have an afternoon full of Tshirt deliveries. Coming at you, Cordova and Germantown.

Good night!