Josiah Updates

Christmas Dancers

2011-12-26T22:23:00.002-06:00

Merry Christmas!

2011-12-25T19:51:00.000-06:00

Christmas was pretty quiet for us this year. The kids opened presents this morning (HOW DO WE HAVE SO MANY TOY CARS NOW?), and we visited with my dad's family this afternoon.

Josiah and Allison enjoyed themselves so much they both fell asleep in the car on the way home tonight.

Josiah continues to fight some weird bug. Friday night, St. Jude gave us some Pedialyte to start giving him instead of water, to make sure he doesn't get dehydrated. So far, it seems to be working.

Merry Christmas!

Stable MRI Results — An Early Christmas Present

2011-12-10T10:15:00.000-06:00

Yesterday's MRI showed that Josiah's tumor remains stable. He's been off chemo since June 2010, with no new tumor growth!

Now, Josiah will never be in true "remission," since the tumor will always be present in his brain. That said, we are in what is the best case scenario — that Josiah's tumor is "dormant." This doesn't mean that it can't or won't grow again in the future, so we will continue regular MRIs in the future, just as we have been doing.

But it sure makes for a good Christmas. I can't say that about the candy Josiah is helping make in that photo. If we give you candy, make sure there aren't any Cars 2 figurines in it.

Haha, I'm kidding.

Mostly.

Happy Thanksgiving!

2011-11-24T18:39:00.002-06:00

Two Weeks?!

2011-11-16T23:11:00.002-06:00

How has it already been two weeks since J's birthday?!

Stephen and I (and half our family) have been either painting, sanding, or boxing up belongings as we prepare to move into our house (!) this weekend. We're pretty excited. When Stephen leaves for work in the morning Josiah now excitedly asks him, "You go work on new house?!?" :)

We're doing well, though.

Excited about seeing family this coming week for Thanksgiving.

Excited about so many St Jude fundraisers going on right now.

Excited about moving to a one story building with a back yard AND a washer and dryer!

If you're free this weekend and don't want to help move boxes you can do this in Collierville. This is the first time (since we've been a part of St Jude) that they've had an organized Give Thanks Walk in Memphis. Ironic, but I guess it's because they have to put so much into the marathon two short weekends later.

Anyway, have a wonderful weekend!

Cheeeeeeese!

2011-11-04T14:38:00.002-05:00

CIMT is unofficially over! Josiah has a couple of posttests spread out over the next few weeks to check on his new skills, but we're done with the intense part! Yesterday was wonderfully low-key.

We have a three year old.

No power of hell, no scheme of man,

Can ever pluck [him] from His hand

Till He returns or calls [Josiah] home,

Here in the power of Christ [he'll] stand

Hooray for 3!

2011-11-02T20:59:00.004-05:00

We are in week three of CIMT...just two days left!

He has gained a lot of strength and new skills for Left Hand that will hopefully carry over.

Josiah turns THREE tomorrow!!! Every birthday he celebrates is a new victory.

Everyone is mostly well now! My knee is cooperating enough that I can continue training for the half marathon. Thank you for praying for us.

You can still donate for Josiah's team here.

Josiah's friends Rayna and Dylan would've celebrated their birthdays this week as well. We are thinking about you and praying for sweet memories.

Continue to pray for our sweet friends Belle, Brody, and Arianna.

If You Can't Say Something Nice...

2011-10-22T13:58:00.002-05:00

I haven't updated this week because I feel like I don't have a whole lot of nice things to say.

Don't worry! Nothing horrible has happened, but few things have gone as planned. For some reason that surprised me this week.

Monday and Tuesday went ok with CIMT starting. Josiah does not enjoy the cast, but he is already gaining new skills and new strength in Left Arm. He is still enjoying going to therapy, but requires a couple breaks in the three hour sessions. Well, Friday I did walk in on him trying to run away from this therapists, but he was really exhausted that day and he only had 30 minutes left anyway.

Wednesday we found out Allison had the hand, foot and mouth virus so Thursday I stayed home with her and Stephen took Josiah to SJ. Friday she got some great-Grandma time and I went to SJ with J. Today Stephen has what Allison had, and Josiah and I have a sinus infection. And I have runner's knee so no de-stress running for me. Stephen is still hard at work with Granddad at the house every night. Whew.

I hope you've stopped reading by now to go do something productive.

Thankful for clorox wipes and Josiah's therapists of indomitable spirit.

Thankful he is already building new neural pathways to teach Left Hand new tricks. :)

Thankful BelleBelle is going home, but it's going to take some explaining for Josiah to understand he won't see her every week. :(

Pray for our health(s).

Pray for a renewed spirit and heart for Stephen and me. This is the perfect storm for miscommunications and frustration to pick us apart.

Pray for Arianna and Brody still on treatment.

Meg and Brandi, can't wait to see you next week! Hope we're well enough to give you a hug.

While We Were Slacking

2011-10-14T22:14:00.005-05:00

Sorry, guys! We're still here. Where have the past three weeks gone!?

St Jude appointments- MDO- other doctor appointments- community group- training for the 1/2 marathon- ALSAC events- enjoying the weather outside- catching up with friends we see too little- closing on our house...

Josiah is talking non-stop. A lot of his words are repetitions of what he just told you thirty seconds ago, but I suppose it still counts. He is extremely silly as usual. And, wow, I like to meet new people, but Josiah makes me look super shy and introverted. He does not meet a stranger. I was running down Highland (a busy street in Memphis) at rush hour with the kids and I kept thinking, "Man, everyone must be so happy to be getting home. Everyone seems to be smiling." Then I spied Josiah through the visor of the jogger waving like the king of England from his carriage.

What would an overdue post be without a little drama?

Josiah's had his MIC-KEY button (Gtube) for 14 months. It has never ever fallen out or been pulled out. Monday night we drive to Martin, TN (a couple hours away) to hang out at an Up Til Dawn event, and it comes out not once but TWICE!! The first time I had supplies in the car to refill the device and put it back in place. The second time the actual device needed to be replaced...the one piece of medical equipment I did not pack for our less than 24 hours stay away from home.

So we left the party early for a nearby ER and had the busted MIC-KEY taped in place til we could get a new one that fit from St Jude. Fun stuff. Thanks, Neil, Eric, and UTM people that helped us out! Josiah had the time of his life while we were there: Unlimited pizza and cookies, sorority girls with iPhones, and camera flashes everywhere. I wish I had videotaped the whole night (minus the gaping hole in his stomach)-- He was going nonstop.

He also got fitted for his CIMT cast. We've been practicing and if I mention 'practicing playing with Left Hand' he immediately starts asking, "No, take it off? Take it off?" Ergh. If he only knew.

Monday he won't get the option of getting it off after a couple hours. Monday is also his endocrine appointment. I have no idea if they will have something conclusive to say about his lethargy or if we're going more to rule something out. We'll let you know when we know.

We continue to enjoy life off treatment and pray for many more days (dare I ask for years?) like this.

It's Fall Y'all

2011-09-25T15:17:00.003-05:00

It is officially fall! I love having to windows open and I especially love not sweating when I walk out to check the mail.

September is almost over, but not without the annual Chili's St Jude night. I've been meaning to post about it, but it snuck up on me. Eat at any Chili's anytime tomorrow (Monday), and they will donate 100% profits to St Jude. We will be at the one near Oak Court Mall around 5:00. Hopefully, we'll see some of you there!

Josiah is doing pretty well. He's having some digestive issues and is still pretty tired. His endocrine appointment is in three weeks. In two weeks he starts an intensive constraint induced movement therapy (CIMT) with his OT. Basically, his right arm will be in a cast type restraint 24/7 for three weeks. This will force his brain to make new neural pathways and encourage his left arm to play a bigger role in his life :). It's used a lot with stroke patients. We are so excited about this developmentally, but it is going to be very frustrating for all of us at first. He will have to relearn how to eat and carry toys with his left hand.

Also this October:

We will, Godwilling, be closing on our first house!! We are overwhelmed with the generosity of so many friends and family members making this possible.

Pray for researchers, doctors, nurses at St Jude.

Pray Josiah will adjust quickly to the CIMT cast.

Pray for wisdom for us as spouses and parents.

Now Where You At?

2011-09-21T09:43:00.002-05:00

Post MRI Stress Disorder

2011-09-16T21:23:00.002-05:00

Is that a real thing?

...Because I'm pretty sure I have it. Still have so much sleep to catch up on.

So Stephen already posted STABLE results! Thank you, Jesus, for this unexpected blessing. My heart is so torn in this temporary victory of ours; We ache every day for other friends who are actively fighting for their lives.

For several days before this MRI I knew something was not right. I asked the Lord to guard my heart and mind from lies or to clarify that vague feeling. I'll spare you the long wrestling prayers and panic attacks that followed that request. After 'the call' Tuesday night all I could do was go to bed. My heart was still unsettled.

Wednesday we got to speak with Dr. Broniscer, and he said that Josiah's labs showed a steroid/ hormonal level that was off. It's obviously not urgent, but we will be heading to the endocrinologist to see what's going on there. TaDa! Lethargy accounted for. Heart settled.

Curse that mother's intuition. No, bless that mother's intui...no curse. No, it is a blessing. I think.

THANKFUL

1. Tumor stable

2. I am not off my rocker yet.

3. We live close to St. Jude so we can talk to his doctors face-to-face.

4. Friends to listen and cry and bless us with their perspectives on Josiah's life and what God is doing because of his cancer.

Well, I feel a little less disordered after a long post and a good cry.

"MY CLOTHES!"

2011-09-15T19:59:00.002-05:00

Josiah, "helping" Merri with clothes. At the end, he says he's playing "hide and boo" with "Knock Knock," which is Monsters Inc.

Stable

2011-09-13T19:22:00.001-05:00

We just got off the phone with St. Jude. The report says that Josiah's tumor remains stable!

Merri and I were both preparing ourselves for bad news this time around. Josiah's been playing less actively for the last month or so, and we thought that would be a sign of something wrong. Thankfully, the MRI tells a different story, so we're trying to chalk it up to him being a growing boy.

Pray for our little friends. Several are going back on treatment this week, and it pains us to see them starting another round of fighting this terrible disease.

Pizza, Popcorn, and Pixar*

2011-09-12T11:51:00.002-05:00

We unfortunately had to stay home from 'school' (MDO) today. Allison has the crud that Stephen caught last week, and Josiah's tummy has been upset. Godwilling, it's nothing that will delay tomorrow's MRI.

Josiah is on his second Pixar film of the day and Allison is continuing what is already a three hour nap. It's probably a good thing we're at home since I'm not in the best frame of mind today. Please continue to pray for our hearts to be prepared for what the next couple of days bring.

We are going to have a dinner of his favorite foods since he won't get to eat tomorrow until 3 or 4 when he wakes up. Germ-permitting, we might venture out to support Forrest Spence Fund at YoLo tonight. Go to the East Memphis location anytime today for 15% to go toward this great ministry to PICU parents at LeBonheur! The Spences were a blessing to us when Josiah was in the PICU after his first surgery.

Pray for Brody, Belle, and Arianna!!

Pray for the health of our family.

* Thanks to my journalism-major husband I can no longer use commas in a series without second guessing myself. I expect Olivia, Stacey, Misty, and countless other MLA-loving English majors to back me up on my choice of commas.

Thoughts That Aren't Mine...

2011-09-06T23:37:00.002-05:00

This is part of an excerpt from "100 Prison Meditations" by Richard Wurmbrand. He was imprisoned for 14 years total in communist Romania. He founded VOM (Voice of The Martyrs) which is where I got this article from.

____________________________________________________________________

Reading the Bible in a solitary cell from memory, I am struck by the extent to which suffering pervades it. It begins with the catastrophe of mankind's expulsion from paradise, and it concludes with the majority of mankind entering hell.

Why do even saints have to suffer? Why is there suffering in the animal kingdom? Why is a baby born with suffering? Is suffering God's only educational method? Why does evil exist? Why have Christians suffered for decades in Communist jails?

The only answer that I believe should be given is not to ask the question. Jesus, when He was on the cross, asked God why He had forsaken even His only begotten Son. His question is followed only by a question mark. All that is revealed to us is that the question exists and that we can live with it.

You do not need more than His peace, which passes all understanding. You do not need both peace and understanding, for understanding presupposes qualifications that most of us do not have.

-- Richard Wurmbrand

____________________________________________________________________

We are so short on peace over here it's a little bit scary. Josiah is having lethargic days and ok days, but doesn't have much of an appetite now. Ugh. If it isn't one symptom it's another. Could be 'a virus' (or 'wedon'tknowwhat'swrong'), seizure activity, tumor growth... God only knows. No literally, only He does.

I've tried to be one step ahead in this and it just isn't possible! Somehow I think it won't hurt as badly when he relapses if I'm expecting it, but that's a lie. I've been thinking about a verse that's in the Psalms somewhere where the author talks about 'Your ways are higher than my ways, your thoughts above my thoughts.' That is some good news right there.

I keep reminding myself that God loves Josiah more than Stephen and me combined. I know He is full of perfect compassion and mercy unlike us.

Pray for us to look at His face and take our eyes off ourselves especially this week. If we don't it will be a terribly long and selfish one.

Last week he did fine for all three therapies, and I'm anxious to see how he does tomorrow. Mrs. Jess, Mrs. Angela, and Mrs. Kelly know Josiah's habits as well as any of his aunties.

Belle's scans are Thursday and ours are Tuesday.

So tired!

2011-08-24T13:53:00.002-05:00

Josiah has gained a little more energy since Sunday. He's not 100%, but it's helping to ease my mind. He didn't make it through all his appointments today. Halfway through OT he just started crying and laying on the floor :(. And yet, after a 45 minute nap he is here trying to pull me away from the keyboard to sing the 'Bambi song' for him.

Continue to pray he is just getting over a virus.

Pray for St Jude friends.

MRI September 13. Belle's is a few days before us, and Brody and Arianna's are in there somewhere around the same time.

September is childhood cancer awareness month! We will help you get aware :)

The Young and the Restless

2011-08-21T21:28:00.002-05:00

Man. What a week.

'The Young' is our babies, and Stephen and I are 'the Restless' in this scenario.

I feel like we have been running like crazy people lately.

Allison is growing, starting to talk, and showing her once mild-mannered brother new worlds of things to get into around the apartment.

Josiah is doing okay. This morning took us to St Jude instead of Redeemer as we'd originally planned. A normal morning begins with Josiah staring at me from the side of our bed anywhere between 5:45AM and 6:30AM. For two days now we've had to go in and wake him up at 7:45 just because he has to have his Keppra at that time. He just isn't playing much. He hasn't had any shunt issues since October 2009, but this type of lethargy is characteristic of shunt problems.

St Jude docs looked him over and decided to just keep watching him. We'll be there Wednesday for therapy appointments anyway. It could just be a virus his body is fighting so he needs extra sleep.

His MRI is in three weeks and Stephen and I have hit 'scanxiety' a little early this time around. Our St Jude friends Arianna and Brody have relapsed. Carissa had been on treatment since before Josiah was diagnosed and she passed away this week. Belle is neutropenic (no immune system) and in the hospital. Avery's family is dealing with losing their unborn child.

The Lord always provides(!): Encouragement, sanity, Peace, wisdom, a clear mind... all the things I run short on when Pain and my sin seem greater than my Savior. Heart, believe what my brain is telling you!

Pray for these friends of ours.

Pray for us to know what to do for Josiah this week.

Pray for Stephen's back-- he has a bone spur.

Pray for my TMJ not to act up right now-- it gets worse with stress.

Thank you for being with us.

This Time A Year Ago

2011-07-29T14:11:00.002-05:00

Happy Birthday, Allison Mae!!

Man, how they grow. We are so thankful for a first birthday for Allison. God is answering many of our prayers for her life even now.

She is mostly content to be dragged around St Jude for hours at a time.

She is healthy and has not yet had to be inpatient at a hospital.

She loves her brother and craves his company!

Big brother is doing okay besides some lingering viral-type symptoms. It has landed him back in diapers for a bit-- I will not elaborate. He did well at speech this morning. He has been a little clumsy lately. Hoping that's because he isn't 100% well quite yet.

Happy end of July!

Summer Snot

2011-07-22T20:31:00.003-05:00

So, when we get sick we go all out.

Allison's cold turned into an ear infection. She gave the cold to Josiah who now has almost no voice. She gave me an infection that made me lie in bed for two days. It's making it's move for Stephen next.

I could make a list of other ailments of the week, but you get the point. I have no memory of this week since we didn't leave the house from Sunday until today. I'm really excited about grocery shopping tomorrow just because I'll get to be around people (over age 2)!

Pray for Josiah to get well quickly! Stephen is sitting with him til he falls asleep. Pray it's only this cold bothering him and nothing brain related. He complained about his eyes hurting (headache maybe?) and has been really lethargic.

Kelly, please do use his photo on your running page! And yes, Alivia, there is a small Alivia running around in Memphis.

Don't forget about the St Jude Marathon coming up December 3! Click here to donate to anyone on his team.

Matchbox Cars and Movies

2011-07-18T13:25:00.003-05:00

I find those things all over the apartment. Josiah is constantly perusing the DVD collection in Allison's room and bringing his suggestions to Stephen and me wherever we might be. "Milo and Otis" was in front of our bedroom clock. "Muppet Treasurer Island" was on the desk with "101 Dalmatians." "Cinderella" was in the bathroom.

The beloved RedCar has been found! He was discovered when one pee-soaked car seat was removed from my car. Josiah's expression was that of pure wonder and joy at the prodigal car's return. Josiah takes him to have a 'nak' [snack] and he has started potty training him as well. :)

Sorry we are irresponsible bloggers as of late. Josiah continues to surprise us with his new found command of the English language. He is quite inquisitive and asking questions about everything. "I'll be riiiight back" is his excuse for choosing not to obey. haha.

He continues to do well in rehab appointments. His next MRI is in September as is his next neurology appointment.

Allison is growing up fast! She's been sick this past weekend but it hasn't stopped her from trying to take a few steps. Pray she will get rid of her germs quickly without giving them to Josiah.

Please take a moment to read our little friend's facebook page if you're able. Sweet Arianna lives here in Memphis and has been a sweet St Jude friend. We met in a waiting room discussing feeding pumps and g tube care. They are celebrating Christmas in July. Please send a Christmas card to encourage her and her family. She and her sister Alivia love Disney princesses :).

It's Time!

2011-07-02T15:06:00.002-05:00

It's time I start annoying you about the St Jude Marathon events!

The races will fill up quickly so be thinking about it now. Prices go up August first-- if spots are even available that long. They expect the 1/2 marathon to sell out as early as July. That's this month!

If you'd like to join Josiah's team click the button to be a "Hero" and put GoJGo as the team name. If you have problems with the website you aren't the first. You can email/message me or St Jude and someone can walk you through it.

I don't have a newborn this year and am psyched to be running the half. So there: You're excuse of not having a partner for those long runs are gone. Email other excuses you have and I will do my best to refute them as well.

We've had a nice, calm week for which we are very thankful. Josiah is chatting our ears off and entertaining Allison til she's red from laughing so hard. We'll be cooking out with family and staying cool this weekend, Godwilling.

Happy 4th!

Our Channel 5 Interview

2011-06-21T14:03:00.000-05:00

Double Thumbsuckers!!

2011-06-20T21:59:00.003-05:00

What a weekend. We had a great time seeing family and celebrating birthdays and dads etc.

Josiah was great at the TV station Sunday. He kept thinking he was going to watch TV while we were there, and I think he was a little disappointed he didn't get to. Haha.

Josiah is quite chatty these days. He loves telling Stephen what he did at school, and is forever bossing Allison around.

He makes me laugh several times a day with his particular preferences.

He decided Allison's dirty clothes basket should go where ours normally goes.

He decided bedroom doors should all be shut when no one is in the room.

He decided the mop bucket drying in the bathroom should be returned under the kitchen sink.

He decided the top of the litter box belongs in his bed(?!). Ok, that did not make me laugh.

He's a character for sure.

We have several friends at LeBonheur right now. Please pray for the Chu and Travers families.

We have appointments Wednesday. Will let you know how it goes.

Father's Day on 5

2011-06-17T14:47:00.002-05:00

Sunday morning between 8:30 and 9:00 my two favorite men will be on Channel 5. Stephen and Josiah will be interviewed for a special segment promoting the St Jude Dream Home Giveaway. There will be a special open house on Father's Day.

We're all doing pretty well. Josiah did a great job with therapy this week. Well, he decided not to talk during speech therapy, but otherwise he did great. :)

Thanks for checking in on us!

Quiet on the Homefront

2011-06-11T20:18:00.002-05:00

We've had a really busy week! It's been a nice, quiet kind of busy.

Josiah did well with rehab last Wednesday. He has been extremely talkative lately. It's so fascinating to hear him formulating sentences and elaborating on what I tell him. I'm having conversations with this little person!! The English major in me is bubbling out. He narrated a scene from Toy Story to me yesterday as we sat on the couch together: I see Woody! Woody on choo choo. There woof woof! Whoooooaahhh. BIG pig!

So exciting.

Stephen and I celebrated our anniversary the day after scans. We are sure in a different place in our marriage than we would've planned. Four years: We should have a house and no kids yet, right? Happy all the time, be great communicators, totally unselfish beings... oops. I cannot begin to guess what else we will experience together, but I know it will be good. It might take another four years before we see it as 'good,' but I know that day will come.

The kids and I started the summer term at MDO and Stephen had some big events going on at work. Weekends have been full of weddings and catching up with friends and family in town.

Thank you for praying for our friend Belle. Her scans show no new growth!! We were thankful for a playdate with her and Mrs. Kelley this afternoon.

Thank you for praying for our family. There is nothing we could ever do to repay you. It's a constant (and humbling) reminder of Grace to us.

Pray for SJ families away from home.

Praise God we can stay off treatment for now!

Sorry I'm a bit scattered tonight. Happy weekend!

Stable!

2011-06-01T15:09:00.002-05:00

Josiah's tumor looks the same! That is the most important news. His shunt is still working overtime, but as long as it doesn't cause him any problems (clinically) we'll just keep an eye on him.

He did great with sedation, and has just been a little cranky and hoarse. We're watching Toy Story ("Woo--ee") right now :).

It's always sobering to talk to the doctors. Every conversation starts out with how 'difficult it is to see where the tumor stops and starts.' They encourage us with stories of other patients in similar situations who've had no change in their tumor for years post-treatment. We know from being a part of St Jude that there are no rules. Survival stats don't mean much-- positive or negative. He's not guaranteed another three months, but we're glad for the prospect!

They told us when we first came to St Jude that once you're a patient you're always a patient. It made me a little sad to think of him spending all of his life coming for scans or something else. I wouldn't have it any other way now!

Thank God Josiah can stay off treatment for now!

Please pray for sweet Belle and her scans Friday.

Cleared!

2011-05-31T21:44:00.000-05:00

Josiah will have his MRI tomorrow morning as planned. His lungs were clear despite his 'productive' cough.

He did really well in most of his rehab appointments. We're so proud of his progress!

Praise God we don't have to reschedule the MRI!

Pray for no more crazy business with his brain floating around and things shifting. It was more difficult for them to see where his tumor's borders were.

We'll keep you updated.

It's Friday Friday...

2011-05-26T20:57:00.006-05:00

We missed appointments on Wednesday so we're going tomorrow afternoon instead.

No one has thrown up since Tuesday, but Josiah still isn't eating much. He will randomly cry and seem to be in pain. Then other times he'll play just fine. Of all weeks this is not the one we want to be seeing signs of intracranial pressure. I'm glad Stephen and I both have Monday off. Hopefully we can just enjoy each other and our babies.

Please pray for calm hearts and minds this week.

Here are some pictures as promised:

Josiah at the Children's Museum!! Thanks, Uncle Dick.

Allison Mae

Little sister being ridiculous...

Oh Man

2011-05-24T22:43:00.002-05:00

Well, Stephen and Josiah have a stomach virus that is hopefully just a 24 hour thing. Allison and I are hoping it's also just a man thing.

Josiah's been acting sickly since Sunday evening. God willing, it's all because of this stomach bug and nothing else. He has a nasty cough, and hasn't been eating much.

Scans are one week from tomorrow. Our friend, Belle, has her scans a couple of days after Josiah.

Please pray his cough won't delay sedation for his MRI.

Pray for no change from his last MRI.

Pray we will rest in the Lord. It's a busy week

When I have more brain power I will post some pictures and elaborate on how we're doing past just the physical realm.

Neurology

2011-05-18T21:02:00.002-05:00

Josiah did really well in his appointments today! We also got to go to the Target sponsored Spring party. Josiah is old enough now to enjoy the music and games.

Tomorrow we have a neurology appointment. It was set up a few weeks ago when his medicine was adjusted for his mini-seizures. I don't expect any new news, just talking.

Allison is doing much better. Monday was probably the worst day for her. She's playing again and is only slightly splotchy now. The best we can tell she caught a harmless virus, but was allergic to that virus. That's why her symptoms continued to get worse and not better with meds/time.

Good night!

Short Weekend

2011-05-15T15:54:00.002-05:00

Last week was a little crazy.

Josiah's had a great week. He did great with all of his therapy appointments on Wednesday, and he has been so obedient and helpful. He told me we needed to pick up toys before we went outside for a walk Wednesday evening! Not going to argue with that.

Allison has a had a really hard time of it. She went to bed Wednesday night with what we thought were a few bug bites. Thursday morning she was covered in hives, and every day since then she's looked worse and worse. The ER doctor said it's a reaction to penicillin that could last a couple weeks [God forbid it!]. Pobrecita is also teething and having serious stranger/separation anxiety. Ugghh!

Stephen and I had some wonderful time away this weekend courtesy of Redeemer. Thank you, Gillilands and Lancasters and Joneses. Those were a lovely 22 hours. Thank you for making us go!

Praise God Josiah is having such a great week! Pray for stable (or clear... we can ask, right?) scans June 1.

Pray for Stephen and me: Mental strength and patience to care for sick kids and each other. Pray I don't take off someone's head at a doctor's office if we have to take her back again.

Pray for sweet Allison. Please pray for some kind of small improvement soon. Praise God, it isn't contagious!!

Announcements...

2011-05-04T22:50:00.004-05:00

Sorry to leave you hanging...

Josiah's ANC is up to 2000, and that's close to what it was before the crazy dip it took last week. To be sure his little immune system stays on the upswing we're supposed to continue to 'take it easy' for a few more days. We might make it to Redeemer Sunday, but definitely not MDO tomorrow :(.

Allison had her 9 month check-up and everything was wonderful except for a mean ear infection. Her head circumference is 46cm. Josiah's was 50cm at six months old. Being at the pediatrician's office (especially this time of year) will always bring bittersweet feelings.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Other news, my Stephen takes his final final at the University of Memphis tomorrow morning! He has worked so hard.

We were both going to school full-time and working several part-time jobs when we first married. When I graduated he dropped to part-time student so he could work full-time at one place and we could have health insurance. We also got to see each other again! He took a semester off when Josiah was on chemo so he could be with us as much as work/ life would allow.

God has provided tuition payments through you, His people, when we didn't have it worked out in the budget. Thanks to those men who encouraged him to finish what he started even when he was worn down. On top of taking care of us, working, and running a few tech sites for fun he has also managed to graduate cum laude! So so so proud.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

.5 ml

2011-05-01T16:41:00.002-05:00

It seems to be making the difference. No seizure activity since Friday morning!

Josiah continues to be tired and moody so there's no telling what his ANC is doing. I watched "Everyone's Hero" ('ball') twice and "Cars" one and a half times. I had to start playing it in Spanish just to mix it up a bit. He didn't seem to mind... or even notice.

We go in for rehab and bloodwork and clinic Wednesday. Pray we make it through all those appointments with out too many tears. He is old enough now to know when he's about to get stuck, and he's a little bit huge and difficult to contain. Then of course Allison gets upset when he gets upset and then all the nurses get upset to see both the smiley babies crying. At least it's short lived.

We'll let you know if anything else comes up. Thanks, Uncle Frank.

Part of a reading today at Redeemer:

...With believers in every time and place,

we rejoice that nothing in life or in death

can separate us from the love of God in Christ Jesus, our Lord.

Glory be to the Father, and to the Son, and the Holy Spirit. Amen.

Seize the Days

2011-04-29T14:51:00.006-05:00

Josiah has been fever free since Monday evening. Tuesday his follow-up appointment went well. All blood cultures were negative. Yay!

Wednesday we skipped rehab in order to keep the virus away from immunocompromised friends at the hospital. That afternoon he 'spaced out' a couple times and just didn't seem right. We didn't want to jump to conclusions, but he continued to blank out Thursday at MDO and this morning. Each episode lasts about 10-30 seconds, and they are thankfully not as scary as the seizures he had last May (no shaking or eye-rolling).

We spent the morning getting labs and seeing our lovely docs in E clinic. They've upped his Keppra (anti-seizure med), and hopefully that will be the end of that. The interesting part of all this came in his CBC. His platelets and ANC (see below) seemed way off... like he was still on chemo. So they took a second CBC-- his platelets were within his normal post-chemo range, but his ANC was even lower!! Why it went from 2500 on Tuesday to 600 today no one can tell. That does explain a lot of whining and moodiness from the past couple days. Low ANC = lots of snuggling and movies.

No Redeemer, no school, no playdates till that ANC comes back up. Stephen pointed out if we hadn't brought him in because of the seizures we wouldn't have even known about his ANC. I was going to bring him to Allison's 9 month check-up at the pediatrician's today! God knows he would've caught every germ in there.

Today has really messed with my brain, and I'm not even the one seizing! It is a little frightening how weak his immune system still is. Nine months off chemo and he's nearly neutropenic! Poor guy. I'm having a hard time staying calm even though Josiah is really fine. I just feel panicky and unprepared. On chemo I wiped toys every day when he was down. As soon as they were down for naps today I started spraying and wiping like a crazy woman.

This morning I met with two of my dearest friends to pray. Someone thanked God for never being surprised, and I've been thinking about this all day. I don't know why, but I am still surprised (and greatly annoyed) to find that I cannot control a thing! Ultimately I am glad of this, but only when I have to believe it.

Oh well.

Pray for Belle as she prepares for her second round of chemo at home in SC.

Pray for Josiah to stay/get well, and not get too spoiled by this extra movie time. It could be hard to break him when the time comes :)

Pray for us: I need a "spirit of sound mind" and Stephen needs patience to stay around me this weekend.

Pray that I will believe God.

In case you haven't seen it yet, Stephen posted an article about our past two years on his website today. Get out your tissue. My buddy is a great writer.

**If you don't remember, ANC (absolute neutrophilic count) is a measure of your immune system's ability to do it's job. 1500-8500 is normal. Below 500 and you have to wear the green mask around everyone.

Round 19721 of this stupid virus

2011-04-29T00:02:00.001-05:00

Josiah seems to be feeling much better. It looks like he just got another round of the virus he keeps dealing with. He's been taking it easy since the beginning of the week, but is on the rebound!

April Showers

2011-04-26T09:34:00.002-05:00

It's been quiet here on the ole blog because it's been quiet at home.

Last night, though, we discovered Josiah was running a fever. Per our usual action, St. Jude saw him last night, and pumped him full of fluids and meds, and got some blood work. While it may just be a viral thing (again, sigh), there is always the chance that his port or G-Tube track is infected. We should get some news from the blood work as early as this evening, and will let people know what's up.

Please pray for rest for everyone. Josiah didn't sleep well, and neither did we. Allison doesn't seem to mind the commotion, but having her along always makes things a little more complicated. Pray that his appointment this afternoon clears things up, as well.

As always, we're humbled by your support.

Weekend

2011-04-10T22:03:00.000-05:00

We had a great weekend. Saturday morning, the four of us went to the park for a picnic with my aunt and uncle, and some cousins. Josiah stuffed his face with food then played on the playground for a while.

He loves my cousin Mary Shea and her husband Gene. They got roped into taking him down the slide over and over and over after lunch.

Allison continues to do new things. She's starting to pull up on things. When she's not crawling, she's scooting around on the floor like Josiah.

Please continue to pray for our friend Belle, and our new baby second-cousin Hazel, who had a rough entry into the world. Belle should be done with chemo tonight, and will be heading home some time later this week. Hazel will get to go home on Wednesday.

Go hug your kids.

The Best Kind

2011-03-31T16:29:00.002-05:00

The best kind of update is an uneventful one. Last week went so quickly! We made it to MDO both days last week (mark the calendars!!)! Josiah had rehab appointments, and has started wearing his new brace every day. He is very proud of it :). Stephen and I had a nice date night over the weekend. Half of us made it to Redeemer on Sunday, and that's 50% better than the last 5 weeks. I felt like I was at a family reunion instead of church. We also had a good time seeing grandparents and cousins and celebrating birthdays this weekend. It was kind of nice to be busy.

Josiah has appointments tomorrow, but he went to bed with a fever so I may have to cancel those in the morning. Poor guy fell asleep on the couch 45 minutes before bedtime tonight. Please pray we don't have to go get cultures and antibiotics.

Please continue to pray for Josiah's little friend, Belle, and her family. If you have a St Jude calendar you'll be seeing Belle with the Easter Bunny all this April!

Thank you for continuing to stay with us. We are humbled by the love you show to us and our little family. I can barely believe we're almost two years from diagnosis. April always brings back a flood of haunting memories. I welcome it though. We didn't expect an April 2011 for him two years ago.

So so so glad to be wrong. Thank you, God.

Why, oh, why...

2011-03-26T15:57:00.004-05:00

...am I not surprised? Infection continues to ravage our apartment. Allison woke up with pink eye which has brought on a special case of "someone-must-be-holding-me"s. We've all had a rainy day nap so hopefully that will help this evening go more smoothly than the morning went.

Josiah is doing well! Allison has started army-crawling and so he's gotten extra bossy about what she is and isn't allowed to touch. He likes to 'help' me put her down for naps by shutting the door after I lay her down. Today she was watching him instead of laying down so we stuck his hand into the crib and tried to push her head to the mattress saying, "Night, night." Oh, if he only knew what is to come. If Stephen and I only knew what is to come. Non-handicap babies are super fast! Thankfully, we've had neighbor-baby Isaac to watch and to help prepare us... a little.

Josiah gets fitted for his new brace Wednesday. He's been quite a chatterbox lately. This morning he was walking around with 'Red Car' (a recent favorite) practicing opposites: "up, down, inside, outside, high, low..." haha.

A long long time ago before we were sick we used to go to Redeemer. We sure miss you guys, and will try for next Sunday.

I don't remember if I've already asked this or not. Please, please, if the Lord brings it to mind pray for our little friend Belle. She is having her tumor resected this Wednesday. You can read more here if you'd like. We love you, Mitchells, and can't wait to see you.

Stay well.

Champ

2011-03-17T15:33:00.000-05:00

Boogie Noses

2011-03-16T10:16:00.004-05:00

Don't pretend you don't have them too. We have green ones in abundance over here. I guess it's good we're off from MDO this week anyway (spring break) because we're trying to keep to ourselves. This means we also have cabin fever in addition to regular fever. Josiah's fever has remained low grade so we haven't had to take him to St Jude for blood cultures.

Allison woke up congested and Stephen has a sore throat.

Josiah is doing okay besides feeling under the weather. He'll play a couple hours before he wants asks for "bed" (couch). When they're feeling better I'll post a picture of the two of them. They're changing so fast, especially Allison! Josiah pushed her walker into his room and shut the door on her the other day :). I guess there can only be so much sibling together time before it goes south... even if Allison doesn't notice.

Thank you, Alivia. Nice to 'meet' you :)

(Obsessive toy & doorknob disinfecting + avoiding crowds + not playing with other kids)

x (14 months) =

----------------------

Making up for colds not caught May 2009-July 2010 now

Sigh

2011-03-03T21:32:00.002-06:00

More watch and see. They decided it's safer to leave Josiah's shunts alone and to monitor him for symptoms of increased pressure in the meantime. Josiah has been extra tired the last few weeks, and has quit drinking by mouth. Those are the only symptoms, and even those could be explained by other things like growth spurts or 2 year old stubbornness.

Recap: Ventricles in brain too small- not bothering him bad enough to be cause for invasive brain surgery. Swollen veins don't seem to be related. They will also be left alone.

We have our next MRI scheduled in three months-- that will be close to two years from diagnosis. Insane.

We're thankful to not have to deal with surgery, but it's a little annoying to wait and just see if he gets worse or better or stays the same. I know it's safer though. They need 'probable cause' before 'breaking and entering.' Oh, we've been watching to much Monk.

So I guess we're back to where we were before the MRI: Live each day and that's it.

Happy weekend. We'll continue to let you know how he's doing as you are very much a part of his life and testimony.

Decision 2011

2011-03-02T16:16:00.002-06:00

It feels like that big a deal to us. Talked to the doctors today while Josiah was playing with Ms. Jess in OT. His eye exam and ultrasound showed nothing out of the ordinary (thank you, God!). So our St. Jude doctors are getting together with the neurosurgeons at LeBonheur tomorrow to decide what to do with Josiah.

It's possible they may decide to just monitor Josiah and wait for more symptoms to show up. It's possible he will have a shunt revision surgery. It's also possible they will do something else. We hope to know sometime tomorrow afternoon.

Josiah and Allison both had a big morning playing at the park with friends after our one SJ appointment. It was great to see you ladies and your babies.

MDO friends, we miss you and hope to be with you next week when we are germ free!!

Thank you for praying for Josiah and the rest of us. Please pray for rest.

Quick Update

2011-03-01T14:33:00.002-06:00

Josiah did really well during the ultrasound. No yelling!

We are waiting on results from the test still, but thankfully, everyone seems to be feeling better.

Eeny Meeny Miny Mo...

2011-02-27T15:47:00.002-06:00

Take your pick of virusy symptoms at our apartment right now. We thought we were doing good to keep Allison home this morning since she's had a fever with her ear infection, and then Josiah ends up being the one who should've stayed home.

Thanks Leigh and Molly for your dedicated thermometer search post church. We went to St Jude from Redeemer and he got a nice dose of antibiotics, tylenol, and a nasal wash (booger collection). If he didn't have a port we could've just gone straight home, but they have to do a CBC to be sure it isn't a bacterial infection in the line. The nasal wash will tell them if it's one of the more common viruses. Not that there's any medication to be taken, but if it's RSV we definitely need to be in isolation at St Jude. Tomorrow we'll go in through the isolation entrance just to be sure we don't get any friends sick.

It was good to be at Redeemer, and selfishly, I'm glad Josiah didn't have his fever before service so I could stay.

Talked to Dr. Broniscer in the medicine room (weekend/after hours clinic at St. Jude), and he said he expected to speak with us at some point tomorrow about the ultrasound.

Pray Josiah gets lots of good rest so he can recover fully.
...we quit passing this sickness around! I'm about to put up a 'QUARANTINE' sign on our door.
...Josiah doesn't freak out during the test tomorrow. He hates his neck being messed with.
... I can quickly get rid of this sinus infection!!

...for rest in our bodies, immune systems, minds, spirits...all that.

Thank God
...Allison seems to be more like herself
...Josiah's brain issues aren't causing him pain that we know of.
...Stephen was able to work from home some last week.

Sang this song this morning:

Out of earth's sorrows into Thy balm,
Out of life's storms and into Thy calm,
Out of distress to jubilant psalm,
Jesus, I come to Thee.

State of the Hacketts

2011-02-25T21:16:00.004-06:00

We feel a little more together after today. Having a plan always helps with that.

We've moved from, 'We don't even know what's up with your kid's brain' to 'We will do A,B and C to find out what's up with your kid's brain.'

The eye exam went well. No evidence of ICP (inter cranial pressure) to the point that it is affecting his vision or the optic nerve. This time they used a sticky patch to cover each eye and he did great! Stephen and I were amazed he didn't fight it.

We got to talk to Dr. Abraham this afternoon. Since the eye exam didn't show any immediate issues, we're going to work on finding out what those swollen veins in his head are doing. His tumor is very vascular so there have always been a lot of veins back in that area. They're just more exaggerated for some reason. They don't know if the vein issue is related to the shrunken ventricles.

Monday he will get an ultrasound done of his neck and chest. The results of this test should show

if there is some type of venous blockage. Josiah hasn't shown any symptoms of this, but they have to rule it out before moving to the next thing.

So there are two issues in his brain that cannot be explained at the moment. BUT none of this is related to the tumor! The tumor is stable and that is helping to keep us fairly calm. Brain surgery is, well, brain surgery. That is much more 'possible' in my mind than going back on treatment is. I feel like we've just settled into living outside hospital mode, and this week was a quick jerk back to eight months ago (sans being hugely pregnant).

Other news: Allison has been running a fever since Thursday morning. She got her turn at the doctor's office this afternoon and is now on antibiotics for an ear infection on top of her little sinus infection. She's just too sweet not to kiss on so now I've got a sinus infections as well. Stephen is spending extra time with us which Josiah is loving. So glad we're a local St. Jude family so I don't have to be at appointments like this by myself. Another reason to <3>

I have a lot of other things rolling around in my head, but along with it is a lot of lovely drainage. Thus, I will wait til my thoughts are more collectable to write more. Sorry for the typos and half-written sentences.

We're thankful for our many doctors we've seen this week-- thankful that they are in just as much hurry to figure this out as we are (close to it, anyway). Selfishly pray for them to study Josiah's case diligently and to arrive at some sort of conclusion.

Thank you, God, for another 3+ months with no tumor growth. (!)

Isaiah we've been thinking about you and praying for your MRI results today. Hope you sleep well tonight!

Update #2

2011-02-24T17:28:00.000-06:00

Okay...

Josiah has an eye appointment tomorrow at lunchtime. This is to look for signs of stress or increased pressure in his head.
Depending on how it goes, St. Jude has some more tests lined up.
Dr Boop and the St. Jude doctors want to make sure there isn't any pressure increases due to the shifting around.

In short, we don't know much more, but we have a plan.

Brief Update #1

2011-02-23T18:37:00.001-06:00

We just got off the phone with E Clinic at St. Jude. Here's what we know now:

The doctors feel that Josiah's tumor has remained stable, despite the other changes (good news!)
In the back of his head, things have always been a bit compacted. With this scan, the veins in this area are bigger than normal. We didn't get much info past that.
St. Jude will be talking to Dr. Boop (everyone's favorite neurosurgeon) in the morning about the ventricle collapse issue.
Josiah is going to have a vision appointment early next week, per the suggestion of the radiology team

We'll post again as soon as we know something. Until then, we're gonna try to get some rest.

Preliminary Results: Lots of Questions

2011-02-23T13:36:00.000-06:00

The MRI itself went really well. Josiah was super funny right until he went under. He woke up well, asking for Allison and for grapes. Typical.

Sadly, the preliminary results are far from typical.

Since the beginning, Josiah's ventricles have been enlarged. These are the areas that store fluid in the brain. His were damaged due to the tumor, and has two shunts in place to help drain them, to keep them from expanding too far.

According to today's scans, these areas have collapsed. They have all but disappeared — they are even far smaller than in a normal brain. Additionally, the area where Dr. Boop operated 21 months ago can no longer be seen — indicating that this open area has also collapsed.

Since so much has changed, the doctors are currently unable to say for sure if the tumor is stable. They also don't know why this change has occurred, or what it means for Josiah in the near (and long-term) future. They are reviewing it with some specialists, and we should know more within 24 hours.

Thank you all for your past prayers and support, and I ask that you continue to intercede on our behalf as this new chapter unfolds. It's scary as hell, and a vivid reminder that as well as Josiah seems to be doing, his battle is far from over.

Pray that the doctors can discern what the cancer is doing, and set off this change. Pray that these changes would continue to have no effect on Josiah's wellbeing and development.

We'll keep you guys updated. Thank you all again. Your love is humbling.

Cleared for Takeoff

2011-02-22T20:25:00.002-06:00

I feel funny saying that we get to have an MRI, but I am so excited to say that we do!

We got cleared. There's a little bit of phlegm in his lungs, but not enough that they're worried about him being sedated.

Sedation at 9:30

Hopefully we'll know something by tomorrow evening.

Suspense

2011-02-21T23:01:00.002-06:00

Sorry. Josiah no longer has a fever. We did make it to rehab appointments last week. Josiah got measured for his new, more supportive AFO brace. Tomorrow we get cleared (please, God) for the MRI Wednesday.

Please pray we can get cleared for sedation this time and get this MRI over with. Stephen and I start 'seeing things [symptoms]' these last few days before scans, and it's difficult to not be overcome with anxiety at times. I always think about when Jesus told some people "... do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Why ruin a good day with our child(ren) worrying that tomorrow might not be as happy? Because we are weak and faithless, that's why. But in my weakness and frail state of mind He is stronger and I lean into him and really believe what I say I believe.

Night night.

One Hot Little Valentine

2011-02-14T11:37:00.003-06:00

Josiah woke up from his nap yesterday with 102.5 fever. Since he still has a port we had to get a CBC in the medicine room just to be sure it wasn't an infection in his line. He got a dose of antibiotics just in case it was bacterial and we were home in time for bed. We're sad to miss 'school' (MDO) Valentine's parties today, but I think Josiah is still enjoying his day. So far we've watched 'Mm Eye' (Bug's Life) and 'Bock Bock' (Chicken Run) and laid on the couch. Allison doesn't seem to understand why Josiah isn't up and running around-- she keeps ramming the couch with the walker and screaming at him.

Unless his fever breaks (without Tylenol) this afternoon we will probably cancel rehab appointments for tomorrow. I see more cartoons in my future...

I know kids get fevers all the time. I just am still not used to him having an immune system. If his fever is this high with an immune system what would it be if he were still on treatment?! We pray he never has to endure that again.

Please pray for his MRI coming up next Wednesday.

Pray Josiah will be able to stay off treatment for the rest of his life.

Praise God for white blood cells and immune systems in our house!!

The Grascals

2011-02-10T20:55:00.002-06:00

... and friends :)

http://www.youtube.com/watch?v=Oew56nR3UuI

These guys were really sweet to revisit St Jude to film their music video. They wrote the song after their first visit to St. Jude. Like most visitors, they were surprised at how happy and confident little cancer patients can be. Thus, the "I am Strong" song. We did not meet Dolly. Her haloed presence in the video was all we got.

We're having a pretty chill week. No MDO today since the streets were an ice skating rink this morning. Josiah is really coming into his two year old self. He loves bossing Denace (the 'kiki') and Allison around. He loves lugging her around in her walker wherever he goes. I was loading dirty clothes into the car for laundry day so I shut the door to the stairwell and told Josiah I'd be right back. A few trips up and down the stairs later, I open up the door to find Allison (in her walker) and Josiah as close to the door as they can physically be. Two sets of blue eyes and two big smiles. I love it.

Speech, OT and PT are all going really well. He is starting to say a few sentences even! We're just really praying this on and off cold is OFF on the 23rd so we can get this MRI out of the way.

Driving

2011-02-07T12:46:00.000-06:00

Josiah's MRI is scheduled for Feb. 23, but that's not quite final yet.

In somewhat unrelated news, Josiah loves my truck:

MRI DELAYED

2011-02-01T07:51:00.000-06:00

Josiah's MRI has been delayed, since they think he's picked up an infection. They've drawn blood to see what's going on, but they can't put him under right now.

We don't have a new date yet, but it should be in the next few weeks.

We were already anxious about these scans — pray that he can get rid of this infection quickly so we can get in that MRI tube!

MRI/MRA on Tuesday

2011-01-30T09:14:00.001-06:00

It is hard to believe its been 90 days since the last, one, but Josiah is scheduled for a "check-up" MRI on Tuesday morning. His doctors also wanted an MRA, so he'll be getting one of those as well. (We haven't had an MRI since the early days.)

We are praying and hoping that his tumor is still stable, as it has been since chemo started a year and a half ago.

We will be updating the blog as we learn things on Tuesday. As always, thanks for your prayers and thoughts. These things don't ever get any less stressful.

The 2nd Catcher Upper

2011-01-24T23:31:00.002-06:00

... but wait, there's more! It's about time for those kinds of TV infomercials to start airing so the rest of this will be short.

This is more us thinking and less factual updates.

I know April and May will always be difficult for us because of that awful time of diagnosis. Josiah was at his 6 month well-baby check-up. I didn't expect it, but my heart has somehow attached his diagnosis to the age of 6th months and not just the time of year. I've been dreading Allison's 6 month check-up since we left the pediatrician's office after her 4 month check-up. That appointment is tomorrow morning and if you read this before lunch on Tuesday please pray for her and us. We know she is healthy and active and happy and fat. We know she is fine! Really, I'm not afraid she has leukemia or a heart murmur. I think I'm just mourning [again] what Josiah isn't/wasn't at that age. The physical difference between them at 6 months is startling, and if I think about it very long I just feel unnecessarily guilty.

Pray for our hearts to be quiet and not longing for what could have or (in our minds) should have been.

Pray for Allison to do well with her shots and not break the scale :)

Pray for our friends Belle (3) and Riley (2) getting scans tomorrow.

Pray for a cure to cancer.

We're thankful for good scans for Ian, Brody, Aiden, Megan, and Colin a few weeks ago!

We're thankful for time with our smiley kids, and we want more, please God!

We're thankful for a good Lord who is constant.

"For the happy man prayer is only a jumble of words, until the day when sorrow comes to explain to him the sublime language by means of which he speaks to God."

-Alexandre Dumas

The Catcher Upper

2011-01-24T22:48:00.002-06:00

We are alive! The last real update we gave was over a month ago so this one will be not be too detailed.

Josiah continues to go to rehab (OT, PT, and speech) once a week. His next MRI is February 1, a week from today. These past three months have gone quickly for a change! I suppose the holidays and snowy weekends helped with that. There is no reason for us to suspect tumor growth-- Josiah's balance and coordination are getting better every week. But as soon as we get comfortable with Josiah's so-far 'stable' condition we are jerked back to reality that we have today with him. We think constantly about our St Jude friends who are cancer free: Some are here with their families and some are with the Lord already. Please pray for Belle and Riley who have scans this week.

Speaking of having him for today, the Lord (it can't be from us) is really laying on us a desire to teach and train Josiah even as a two-year old that his life does not belong to him. The sooner he can grasp that truth the easier his complicated little life will be. What a frightening joy it is to be in charge of a little person. This time next year he will be able to talk back... then what!? Pray for us as we try to train him and his sister!

Oh his sister. That's another blog post entirely. He loves her and is also starting to show signs of big brother annoyance. This is mainly due to the fact that if she can reach a train or a car she will grab that train or car and stick it allllll up in her mouth. To the mature two-year old boy this is an unthinkable horror.

The babies and I have also started MDO at the church I grew up in. In the short month we've been there it's been a huge blessing for all of us. I get to work with 3's. Josiah is in a room he loves. Did I mention there's a train table and a slide in his room? Allison is getting lots of socializing in. What more could she want than new faces to smile at? I love preschool. I'm sure it'll be fun when there are no diapers at home and the babies can carry their own bags and read books to me, but I love preschool. Thank you, Ms Glenda and Ms Steffeny!!

...to be continued.

Josiah and the Box

2011-01-03T20:05:00.000-06:00

A Non-Update

2010-12-20T23:53:00.000-06:00

I know it's been quiet around here, but thankfully, it's been quiet around our home. Josiah is doing really well, and is taking to speech therapy very well.

I think he views Allison as a person for the first time, since we've been putting her in the walker for a little while each day. Josiah will pull her around the apartment, showing her things and telling her about them. Who knows what he's saying to her, but he's really excited to be talking, and that is what is important.

Also, he shoved her (in the walker) into the Christmas tree. Not sure what that means.

Josiah 1. Christmas pictures 0.

2010-12-08T22:08:00.003-06:00

Totals

2010-12-07T13:34:00.002-06:00

$6,447.00 from GoJGo to St Jude! [insert wild clapping here]

THANK YOU SO MUCH! We saw lots of teammates and other friends we didn't even know where running. You all looked great! While I did miss running the 1/2 it was very nice to do 5k and be done sweating in time to yell at Coley, Anna, Tracy, Dyane, the Russes, Team BELLE and everyone else. I'm crying even now (ugh. never knew having kids would do this to me) thinking about how humbling it was to see thousands of healthy people (mostly:) running for the benefit of Josiah and so many other kids.

To the families of Dylan, Rayna, baby Wade: We thought about you all Saturday.

Josiah is on eBay

2010-12-07T09:11:00.002-06:00

It's not as bad as it sounds:

Go, Team, Go

2010-12-03T21:03:00.000-06:00

GoJGo is up to $6,239! We still have a few more hours before the race if you haven't gotten a chance to donate yet. Josiah is getting his beauty rest for tomorrow and we are not far off.

Hope to see you on the sidelines (or running in the street) tomorrow!

My Standardized Two Year Old

2010-12-02T21:31:00.003-06:00

We got feedback from Josiah's testing last week. Speech therapy is going to pick him up to help jumpstart things. He is on the very lowest edge of 'average' for his age. I think he will catch up in his own time, but there's no harm in having a little extra help. We are so proud of the progress he's made lately. When he took this same psych test last year he couldn't get from laying to sitting on his own. This year he could walk up steps with some help! :)

GoJGo is up to $6,054!!! WooHOO!! Out of the 104 people who've donated so far I only know like 30! It's really encouraging. Thank you.

Race Weekend!

2010-11-30T21:57:00.002-06:00

It's really snuck up on me this year, but it's St. Jude Marathon weekend again!

I have not been as good this year about keeping you all updated on the goings on of Josiah's team. Chief Dyane has taken charge of Team GoJGo this year and has done a great job motivating us and raising money for St. Jude. Thank you so much to all of you who have donated to your friends and family who are running. Thank you to the 13 run/walkers who are participating on his team this year. So far GoJGo has raising $5,454.00! That is amazing! If you haven't donated yet check out this link for his team.

We'll be cheering from the sidelines as you run through the St Jude campus, guys!

I'll post later about details or you can go on the website and get any questions answered there.

Holiday Time

2010-11-29T19:49:00.001-06:00

"In everything...

2010-11-26T20:23:00.002-06:00

...give thanks."

We are thankful for the Lord's promise to provide for His children . It's far easier to be excited about His provision when it lines up with what we think we need: our son out of the hospital, our bills paid, etc. We know no one is promised tomorrow, but the Lord has made us an everyday reminder in Josiah. We are so thankful for so many healthy days lately.

Please pray for some neighbor-friends of ours who just lost their baby, Charlotte Hope. We are thankful to know their family even a little bit and to have been blessed by their blog of Charlotte's life.

Helper

2010-11-23T09:30:00.002-06:00

Bleegh.

2010-11-22T15:16:00.002-06:00

Sorry it's been almost two weeks. Last week didn't really happen in my mind because everyone was home sick. Stephen and Josiah shared sinus infections while Allison decided to shake things up by getting pink eye. Everyone is on the mend now. I felt like I was back in chemo-mode: I frantically clorox wiped anything I thought might have been touched by the diseased ones. [Crossedfingers] I have, so far, evaded the crud.

Josiah had his psychological evaluation this morning and did pretty well. We'll get results in a few weeks. Kelley, I kept thinking about Belle while we were there. We have a port flush and some PT before Thanksgiving and then we won't be back til next Wednesday

:) Josiah is talking more every day even if we don't know what he's talking about. The other day I was asking Allison if she'd 'gotten a hold of herself' yet, and Josiah pipes in, "Get a grip?"

Happy Thanksgiving!

So Two...

2010-11-10T21:13:00.002-06:00

Josiah had an awesome birthday last week, and seems to know he is now so much older. That boy is trying to run with his new brace, y'all! I'm glad we have hardwood floor so I can always hear what room he's in. He is also talking a lot more! He's started repeating phrases I say a lot. Yesterday as we were heading out the door I stopped to grab one more diaper and said aloud, "Lets take this with us just in case." About three stairs later I hear "jha si case" uttered with the exact same inflection as my voice! It's a little bit creepy.

Josiah continues to do well in therapy. We are scheduled to see a speech therapist in December just to see what they think. He is involving his left hand in more activities, and he just started eating with a spoon like a big kid! Gosh, I love seeing him look so proud when he accomplishes what he set out to do-- even if it's just getting that dang yogurt into his mouth.

Tomorrow Marlo Thomas and the Today Show people are coming to St Jude to film so Josiah is planning on making an appearance for ALSAC. I won't be surprised if he cheeses his way onto some commercial tidbit by Thanksgiving.

Allison is laughing and talking. The other morning I woke up to her singing to herself :D...how awesome is that?! Josiah is more and more interested in what she's doing now that she can hold her head up and watch him run across the room. Since Josiah was physically 6 months old for 14 months, anything Allison does is amazing to all three of us. She's kind of our second 'first child' versus just our 'second child' in that respect.

Thank you, God, for Josiah and Allison.

Eighteen Months

2010-11-08T16:49:00.000-06:00

Today marks the 18-month anniversary of discovering Josiah's brain tumor.

In a span of 72 hours, we went from having a normal life with a normal 6-month old to seeing our son off for brain surgery to remove what would turn out to be a massive brain tumor.

I still can barely think about that first weekend. It was a whirlwind, with everything happening at the speed of light and in slow-motion, all at once.

I remember driving to Methodist Germantown that morning for what we thought would be a "just in case" ultrasound of Josiah's head, prompted by our pediatrician.

Thank God for Dr. Chris Hanson. If it hadn't been for his care and attention to detail, we might have lost Josiah without ever knowing he was sick.

Thank God for the doctor and nurses at Methodist Germantown, who when they discovered a mass in Josiah's skull, took the time and care to arrange our transfer to Le Bonheur Children's Hospital for a CT scan

The drive to Le Bonheur was surreal. Merri and I drove in silence across Memphis, literally having no idea what to expect, but knowing that our lives were changing forever.

A CT Scan and MRI later, the full extent of Josiah's tumor was realized. We received terrifying news from the Neurosurgery team at Le Bonheur — that the growth was very large, and had already caused irreversible damage to our six-month old's brain. While test results would later confirm it, they were positive we were dealing with brain cancer.

I remember sitting on the couch in Josiah's hospital room with Merri as Dr. Boop and his team told us what was happening. Boop is both incredibly intelligent and incredibly caring. He was gentle and soft-spoken as he told us Josiah had to have surgery, and that our little boy may never see, walk or talk like a normal child.

On Sunday, May 10, 2009, our pastors and a large portion of our church came to baptize Josiah the day before his surgery. It was a sweet time with family and friends that I will never forget. I know we will be joyous on Sunday when Allison is baptized, but I don't think we will ever have a moment like that one again in our lives.

On Monday, May 11, Josiah went into surgery. Those hours waiting were the longest hours of our lives. Every time the team called us to give us a status update, we feared the worst.

He came through remarkably well, and has continued to blow past milestones and limitations.

Today, he is a mostly normal 2 year old. Some days, it is hard to remember that he is still very much in a fight that most people can't understand. 3/4 of his life has been spent in this fight. It makes me angry, honestly. It makes me question a lot of things I used to think and believe without doubt. I'm often frustrated with people with "lesser" problems than us. Every time Josiah loses a little friend from St. Jude, Merri and I both cringe.

At the same time, though, Josiah encourages me daily. He has figured out how to walk with a limp and play with his toys using one hand. He listens well (most of the time) and is learning new words all the time. I know that his doing well is a result of God's working with/through/beyond the science and doctors at St. Jude.

I don't know what the future holds. I hope that Josiah will continue to do well, and that his cancer will stay at bay. I don't know if that will happen or not. I do know that we're thankful for so much time with our son, and pray for more time with him.

Thanks for all of your prayers and support over the last year and a half. If anything, please pray more. We're worn pretty thin. These post-chemo months have been good to re-charge a little, but we're tired. Please continue to pray for Josiah and us as we press forward.

Happy Birthday, Josiah!

2010-11-03T17:39:00.000-05:00

We're really excited Josiah is 2! He was really excited today in therapy!

Happy Weekend!

2010-10-31T15:38:00.004-05:00

Hope everyone has a happy time tonight. We trick-or-treated Friday with friends at St. Jude. We're truly making today a day of rest. Josiah had a blast at the park yesterday and is still catching up sleepwise, I think. He was so sleepy this morning at 'Mer mer' [Redeemer]. Thank you so much for praying for our family last week especially. Thank you for coming and celebrating 2 years of Josiah, those of you who were able to come yesterday! We had a great time visiting with all of you. I realized when we got home there are a few gifties that had no name on them and I don't know who to thank: Thanks for the little white penguin outfit, etc. for Allison, whoever you are :).

I know this blog is for you to keep up with Josiah's progress, but I have to put this picture of his little sister. She's getting more and more interactive each day and that has Josiah absolutely thrilled. I know he's going to flip when she learns to crawl and follow him around. Also, I wish this green sweater came in my size (Thanks, Ms. Olivia :).

This week we just have rehab. As Stephen already posted, we have a lot of appointments in the coming months to assess Josiah's mental/physical growth. For now, we get to chill and just be content with today! This verse has been stuck in my head since this morning. The Lord encouraged me with a reminder that He is not trying to break our hearts or make our child's life miserable. His only plan is to refine us and both of our children to be less like ourselves and more like Him.

When through fiery trials thy pathway shall lie,

My grace, all-sufficient, shall be thy supply;

The flame shall not harm thee; I only design
Thy dross to consume and thy gold to refine

He will only burn the parts we don't need anyway. When I think He's being unfair and asking too much of our baby, He reminds me Josiah has never been mine [even though I want him to be]. It is the most difficult task to not set our children up as more important than the One who gave them to us to raise. I can barely pray 'Your will be done' when I think of what that might mean one day. But I can pray it with confidence when I remember how we can (and must) trust Him.

Love you all.

Don't Forget About Josiah's Party on Saturday!

2010-10-28T16:36:00.001-05:00

Go here for details.

MRI Monday Update #2

2010-10-25T14:16:00.001-05:00

Josiah woke up fine, and has already eaten some lunch. We just got home, and both of the little ones are sleeping.

St. Jude's preliminary report says Josiah's brain tumor is stable (no change) since chemo ended. This is the best news we could have gotten today — praise God! We'll get the official report tonight, but it should repeat the "stable" mantra.

Josiah will have another set of scans in 90 days, and in the meantime is scheduled for all sorts of odds and ends around the hospital — vision test, some bloodwork, lots more physical therapy, etc. He got a flu shot before we left today, which he wasn't too happy about.

Thank you all for praying and thinking about us today. We were pretty nervous going into this morning, and are so relieved to get good news. While Josiah still has a long road ahead of him, it's nice to have some positive milestones.

MRI Monday Update #1

2010-10-25T08:26:00.002-05:00

The just took Josiah and Merri back for his final look-over before the put him to sleep for his scans. Allison is napping, and I'm killing time in the waiting room. Please pray that Josiah goes to sleep smoothly and that they don't have to intubate him during his scans. We're going to go eat some breakfast in the cafeteria and hang out with Jeffrey for a bit. Josiah should be done in a couple of hours.

MRI Monday

2010-10-24T09:55:00.001-05:00

Josiah's first MRI post-chemo is tomorrow morning at St. Jude.

As usual, we're hoping and praying that his tumor is stable from the previous MRI. A stable tumor would mean that chemo did its job.

If there's any growth, it will probably mean that Josiah will go back into chemo, but any future plans would be dependent on the MRI, so it's hard to say for sure what would happen.

We should get results late tomorrow afternoon.

Pray for:

A stable tumor (or no tumor, but that's really crazy far out there).
That Josiah would tolerate going to sleep okay, and that he wakes up happy and hungry
Merri & I's rest this evening. We are pretty nervous.

If you own a #GoJGo shirt, you should wear it tomorrow. If you don't, you should order one.

IT IS BIRTHDAY TIME

2010-10-18T21:17:00.003-05:00

Josiah is turning 2 on Nov. 3! You should come to his party:

Marquette Park (@ Mendenhall at Park Ave.)
Saturday, October 30, 9:30-11:30AM

Come and go as you please; bring frisbees, games, kites, etc...
We’ll have cake — feel free to bring a picnic!

RSVP W/ No. of Adults and Children: merrilamb@gmail.com

As much as he would want them, please refrain from bringing Josiah any more toys. Our apartment is going to explode. Besides, Josiah would rather you donate to St. Jude in his honor.

We'll have some #gojgo shirts at the party for sale. All proceeds go to St. Jude.

Download the invitation as a PDF here.

October Labs

2010-10-14T16:34:00.002-05:00

Still no new leg brace, but we did go ahead and have our monthly check-up. Labs looked okay. His platelets and hemoglobin went down again, but ANC is now up to 2000! Josiah was excited to show off his walking skills and all his new hairs.

We saw neurology and they are happy with the dose of Keppra (anti-seizure med) he's on right now. If he continues to be free off seizure activity for a year they will start weaning him off the medicine at that point.

It's been nice to be at St Jude this week (three days instead of our normal one day) and to see friends back in town for scans. Collin, Megan, Belle: So fun to spend time with you guys!

Please continue to pray for our upcoming scans. This will be our first scans off chemo for those of you who just started following Josiah on here. We are so thankful for the physical progress Josiah has made these past few months. It's a huge blessing to see him flourish without any chemo side affects to hold him back. All that doesn't make us any less anxious for that official report from radiology October 25.

The longer we are in this the more I realize there are no rules. After treatments, private research, and attempting to bargain with God in exchange for your child's life it is the Lord's will be done. Nothing else. I have to believe He is good, and that he knows better for our son that we do. And that goes against everything I feel most of the time.

TOYS! EVERYWHERE!

2010-10-10T16:55:00.000-05:00

We try to keep a minimum amount of Josiah's toys out at a time, leaving the rest put up in his room, until today, when he figured out how to get the wagon out of his room. It's now in the living room...

The Boy in the Tree

2010-10-08T21:29:00.000-05:00

Hind Sight

2010-10-04T13:00:00.002-05:00

This week marks one year from Josiah's last brain surgery!! Those of you who've been with us from the beginning may remember that from May 2009- October 2009 Josiah had four surgeries all related to his head-- basically every time the scabs would fall off from the last one we'd pack our bags for LeBonheur expecting the next shunt revision within a couple weeks. All that to say, a whole year between surgeries is huge! And what a ridiculously LONG year. We've been chemo free for nearly three months, Josiah can get around the apartment on his own, we have a little girl-- definitely weren't expecting any of that last October. Thank you, Lord, for going beyond our expectations. Godwilling, we will celebrate Josiah's second birthday at the beginning of next month. I remember being afraid to buy Josiah clothes for the coming season because I was too afraid he wouldn't ever wear them. The Lord is increasing our faith and trust in Him.

Josiah is continuing to walk more and more. He now prefers it to booty-ooching around on the floor, and that's saying something! His hair is getting thicker and thicker. One day soon it will stick up more than his little sister's.

We're still waiting for his new braces to come in. Can't wait to see how much more they help him. We are so proud of how much he's learning and growing.

Please pray for our friends the Ballews as their son passed away a few days ago. Pray for his sister as well as his mum and dad.

Continue to pray for little Jake as he and his family have fun every day that they have.

"And which of you by being anxious can add a single hour to his [or his child's] span of life?"

Sigh....

Fresh Air

2010-09-26T15:51:00.004-05:00

What an awesome day in Memphis! Our apartment is so much more quiet with the window units turned off. All the windows are open and it's amazing.

Maylon, this is for you :).

I have actually had a lot I've wanted to write about but's been an extremely emotional week. Then I have a touch of carpel tunnel syndrome in one wrist so it takes a while to type anything while I'm wearing my brace. It's been a difficult week for St Jude families. Our little friend, Jake's, cancer is back and much more aggressive. His parents and two big sisters are enjoying each day with him. Whenever I read of another child nearing the end of their fight it may as well be my own son. Then comes, as another cancer-mum put it, "survivor's guilt" where you wonder why it's isn't your son in that other child's position.

I've been thinking about this song a lot this week:

(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

-- Matt Redman

I started thinking while I was listening to the chorus, "Sometimes I wish He would just let go, so I wouldn't feel this internal conflict of my reality fighting His." But I know I would feel it even if that were possible. This place is messed up, and my heart won't make sense of it 'til I'm with Him.

I remember the Lord using this song in my life in college and just crying with relief that he "is coming for a heart that holds on." What a parent He is to still keep His promises to me when I ask Him to leave me alone.

Continue to pray for Wade and Jake and their families.

We look forward to seeing you next week for scans Belle, Ian, and Megan! Christian, have 'fun' in FL. We'll miss you!

Praise God...

- for Autumn

- Josiah's walking around the apartment without clinging to my pants leg! Pray for continued confidence.

- Allison had a healthy 2 month well-baby check-up. Following brother's footsteps in 97% for everything :)

- for St Jude. go to http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f87d4c2a71fca210VgnVCM1000001e0215acRCRD

and see their new look! You'll see a video of a super-cute boy I know on the slideshow!

September Clinic Day, etc.

2010-09-14T14:09:00.004-05:00

We had blood draws for the month yesterday. Josiah is less okay with his port being accessed since it's only once a month now. I guess he forgets how quick and painless it is in that time.

His counts are just a bit higher than last month. He is still technically 'immunocompromised' even though he doesn't need a mask. By the time Allison is due for her six month shots his system may be ready for immunizations as well. His six month shots are the last ones he received.

We had a really fun weekend spending time together before Stephen left to go out of town for a few days. He'll be home in a few hours, and we can't wait to see him! We went to Redeemer's fall party at the Shell, and Josiah enjoyed his first live concert. He is apparently a big fan of the blues/ mo-town beats. He sat there stuffing hotdog in his face while he swayed to the beat. He's got pretty good rhythm, actually.

The cheekies were already full so just smashed the rest of the bun up there to wait it's turn. This inevitably ended in me digging bread out of my child's mouth since there was no room to even chew. Ridiculous. How do you teach a child to chew up his food?

It was difficult waiting in the e clinic waiting room this month for some reason. It may be because there are several families who've gotten hard news this month. I feel guilty, somehow, that Josiah is feeling well and growing hair and is able to eat well. There's nothing to really say (even though you understand perfectly) when you see a parent trying to comfort a child who is obviously in pain from chemo or something worse.

It brings back floods of memories and anxiety that at any moment it can be us again. Not that worrying will add a second to this day or solve anything for tomorrow. My heart just aches for those families we know and those we don't. I was reminded by a friend that this place is not our home, and I know that will always be the biggest ache in my heart. I never want to be without Josiah here, but when I don't think as a human mom I do look forward to us all being where darkness and cancer can't reach.

While I'm so thankful to have Josiah be as normal as he'll ever be, I miss being at St. Jude so much... one more reason to never leave Memphis!

Please pray for Wade, Nichole, sister Lauren and baby Wade in South Carolina.

Please pray for several friends who have MRIs coming up in October... Ms Megan and Ms Belle.

Please pray for Josiah's scans set for October 25. We're at 12 weeks off chemo today.

Love you

Big Brother

2010-09-03T14:08:00.002-05:00

The title does not refer to political views of any kind so don't worry.

Josiah, the big brother, is 22 months old today! He is settling into his role of older sibling. He motions for Allison to stop with his hand out if he thinks she's been crying too much. They were next to each other on the couch and he gave her a love-whack for crying in his ear during his Tom and Jerry movie. He can't stand to go anywhere without her though! When I put him in the carseat he immediately points to the carseat base beside his as if to remind me to go back upstairs for her :). He wants to be able to carry her carseat by himself. This next year should be a lot of fun.

Josiah's done really well in rehab this week. Thank you for praying for him. He is gaining confidence little by little. He'll walk from person to person in a room by himself now! He still follows me around the house clinging to my pants leg, but that's more than just fear of walking I'm afraid.

Septemberrrrrrr

2010-08-30T08:12:00.001-05:00

IT IS COLD OUTSIDE!

Well, not cold. But not 410975 degrees.

This is from a friend:

September is pediatric cancer awareness month. Gray is the color for brain cancer! So I ask that you in some way contribute to the voice of these children and aid in the efforts to bring awareness to their need of research for a cure. I was reading some statistic, where breast cancer gov't allocated funds exceed $300million and kids cancer gets less than $30 million!!! WOW!

A Year Ago

2010-08-28T23:03:00.003-05:00

August 29, 2009 we were inpatient getting Josiah's feeding tube placed. I've been looking back at pictures of him when he was Allison's age and printing off recent pictures of the two of them. It's encouraging to remember how much he's grown despite his handicaps and multiple surgeries. How remarkable is medicine, and the human brain, and the One who created it all?

I love this fat little man.

Ready, Set, Go Jo Go!

2010-08-27T22:06:00.003-05:00

The St Jude Memphis Marathon (and 1/2 marathon and 5k) is coming up fast! If you've been thinking about training let this be the weekend you decide: Registration fees go up September 1.

To register go to http://www.stjudemarathon.org/register.htm.

If you want to join Josiah's team you'll need to sign up to be a "hero" (additional $25) and enter "Go J Go" as the team name. We had a great time last year and hope to raise even more for St Jude this year. The number to beat is $8,852! After you sign up to run look over in the right sidebar to order Go J Go shirts. All proceeds go to St. Jude/ ALSAC to help Josiah's friends.

We've had a busy week trying to get some outside play time while the weather is bearable. Stephen is riding in a bike race tomorrow and Josiah has rehab appointments on Tuesday. Allison was four weeks old yesterday! We're getting into some kind of a schedule which is definitely helping me.

We're looking forward to all being at Redeemer this Sunday as long as Stephen's legs are still attached after the 17 mile ride :). If we make it that will be three weeks in a row-- this is the most we've been able to worship together since before Josiah was diagnosed in May 2009. How exciting!

August

2010-08-18T13:25:00.002-05:00

Well, our E Clinic visit for August is behind us. It's barely believable that Josiah has been off treatment for a month already. His eyelashes are about halfway in, and he has a soft, thin carpet of hair all over his head. It still surprises me when I kiss the back of his head-- I even miss the smooth bald spots. I suppose you always miss what you know though. He looks and acts like a boy more and more.

Clinic went well! He walked around the room (trying to catch me) for Dr. Broniscer! All of his numbers are below normal. ANC 1700, platelets 182,ooo... these are numbers we saw when he was between chemo rounds and that surprised me a little. They say it can take up to six months for his bone marrow to really recover. Even then, it might never be what it was before treatment. Thankfully, there are no symptoms (bruises, exhuastion, etc.) with these numbers. Really, they're still awesome compared to what they could be!

Josiah is also doing well with rehab with the exception of confidence. Since he got his helmet he's fallen 2-3 times (I realize that's nothing for a normal child learning to walk) and it has really gotten to him. He and I both cried through PT as he followed his therapist around the room screaming. He can do it, but he hates it! If he even starts to lose his balance he panics instead of trying to catch himself. I know it will take some time and tough love, but it's so sad to see him so scared.

Please pray for Josiah a spirit of "sound mind" and not of fear as he works so hard at walking. We (I) need wisdom to help him and not handicap him further by babying him.

Please pray for Stephen and I as we learn to balance and love two children at the same time.

Thank God for answering my prayer for Allison to be flexible and good at sleeping. She did great her first time to St. Jude :).

2010-08-11T16:12:00.002-05:00

Thank you, everyone, for the meals, Allison gifts, big-brother gifts, and love for our family!

It's been so long I think I've forgotten how to even write a post. As Stephen said, we're all doing well! Allison is extremely sweet and laid-back like her big brother was. I've been able to rest pretty well considering she's only 13 days old. We're learning how to manage meal times as they end up wanting breakfast and dinner at the same time.

Next week is our August clinic visit. We can't wait for them to see Josiah walking by himself. He got his helmet yesterday in PT, and it's already helped him gain confidence. Of course, falling is still extremely frustrating to him, but at least his little brain is as protected as is possible. He's making tracks around the apartment :). We were too proud to cry when we saw him walking across the room and picking up toys without us hanging on to his shirt/shoulder. It made me happy this morning when I was sweeping and had to think about Josiah walking down the hallway and stepping in my piles.

The first few lines of this song have been echoing in my mind these past two weeks. I couldn't tell you much anything about the Bible or quote any verses, but I know the Lord has been merciful to us with each day we have with Josiah and his sweet sister. It's been just enough of a break from hospital adrenaline mode to begin to remember that He is good all the time.

God be merciful to me

On Thy grace, I rest my plea
Plenteous in compassion Thou
Blot out my transgressions now

Love,

merri

Going Shopping with Josiah

2010-08-10T20:21:00.001-05:00

Family of Four

2010-08-06T14:33:00.000-05:00

The past week has been far less traumatic than it could have been.

Little Allison is doing well. She is sleeping pretty well at night — just waking up to eat. She is also doing pretty well at sleeping all day, so we're working to get that adjusted.

Josiah seems to be adjusting well to being a big brother. He gets a little attention hungry when Merri is feeding her, but nothing too bad.

He is very sweet with Allison, pointing to her with a worried look on his face. He also tried brushing her hair with a piece of chicken from his lunch in his hand.

Merri is recovering very well — she's already running errands and cleaning up the apartment.

Meet Allison Mae

2010-07-29T19:28:00.004-05:00

Update: Lots of baby photos can be seen here.

Josiah Meeting Allison Mae

2010-07-29T19:28:00.000-05:00

Brief Update on Baby #2

2010-07-29T11:45:00.002-05:00

Merri has been hooked up at the hospital since about 8 this morning. Her water has broken, and the contractions are getting bigger and more often, but we still have a ways to go.

Public Service Annoucment

2010-07-28T10:47:00.000-05:00

Hackett Baby #2 is being induced tomorrow morning. She doesn't have a name yet, which is becoming almost comical. In a way.

Josiah will be with his grandmothers tomorrow and Friday. We hope to be home by Saturday. Stay tuned tomorrow for pics and (hopefully) her name.

Just One

2010-07-20T14:16:00.003-05:00

Still just one child at home.

Just one day of appointments this week.

More than just one new eyelash coming in!

We're doing well. For the most part we're just enjoying time out and about before little sister comes. We're about to go play at the mall playground (who cares about germs?!) with a couple buddies. Josiah is getting extremely comfortable with his therapists. Comfortable isn't the word...stubborn? He thinks he's hilarious trying to scoot off the mat and out the door during OT. Of course, once PT comes around he is suddenly zapped of energy and just lays on the floor laughing [see photo]. Sigh.

We get to try out one of these stylish helmets (in blue) so we can safely give Josiah some room to fall and practice walking without an adult hovering over him.

Thank you for praying for us. Josiah is putting his trains on his sister's play mat and in her car-seat. Oh, I can't wait. :)

Post-Treatment Plan

2010-07-15T14:20:00.000-05:00

We spent the morning talking with Josiah's doctors about what's next, now that chemo is done and his counts have settled.

We looked over his first and most recent MRIs. It's always stunning to see that first one, with his ventricles so enlarged with so much tumor on the right side of his brain. Compared to those images, his more recent scans seem so normal, even though there is still a good bit of tumor left.

Starting soon, Josiah will just have to visit St. Jude once a week for therapy. Once a month, his port will be flushed, counts checked and he'll be seen in clinic. It's weird to think how little he will be at the hospital.

Scans will be in three months. If there's growth, they will re-start chemo or operate. Radiation is still off the table until he is 3.

We still have to keep an eye out for all of the things that we've had to keep an eye out for in the past.

He's doing amazingly well. He's *this* close to walking on his own, and is ooching around the apartment faster than ever.

While he doesn't talk — other than various squeaks and giggles — he understands more and more each day. We can tell him what room to play in, and away he goes! He's also doing better with his sippy cups and spoons.

It's a little weird that he's done with chemo, honestly. Merri said she thinks she will be homesick for St. Jude. I agree. It's been a wild 14 months, but hopefully it's all behind us.

Pray that there is no tumor growth, and that Josiah continues to grow healthy and strong.