Wednesday, July 15, 2015

Kindergarten Graduation

We're a little late, but wanted to share that Josiah was part of St. Jude's kindergarten graduation! We're so proud of him, and while 1st grade will be tough, we know he's ready.

Monday, June 15, 2015

Monday Night

We're all home tonight.

Josiah came off oxygen last night when they moved him to a regular room, and he held his own so today was mostly about waiting for him to wake up and gain some coordination. He could barely keep his eyes open yesterday, but was pretty chatty (just in slow motion) today.

I got to sleep at home with the other two babes last night while Stephen stayed with Josiah. The hardest part about being inpatient is not being able to kiss everyone goodnight. I'm so thankful our family never had to be separated during treatment since St. Jude is just miles away from our house.

Thank you to everyone who helped keep us fed and the little ones entertained. For those of you who offered to keep or cart them around to and from MDO I am adding you to my emergency childcare list!

We're upping one medication and meeting with neurology at St. Jude later this week for a pow wow.
Josiah had an EEG while we were there today and it seems to show about what it always does: The seizures start on the right and travel from there.

This seizure was very scary because we could hear and see him choking, unable to clear his airway. It was unlike anything we've experienced with him.

My main questions revolve around that: Why this new presentation? Does that mean something?

It's discouraging to see him have these two generalized seizures exactly eight weeks apart after he'd gone almost six months without one that we couldn't handle at home. I'm afraid we're trending back the other direction now. I do hope I'm wrong, though.

But tonight we're all home.

Monday morning

Lots of good news this morning. Josiah slept well, without any additional help breathing. He's more himself this morning, but his speech is still slurred and he's still a little uncoordinated, but this is a huge step toward going home. 

We are graduating from ICU and are headed to a normal room this morning. Not sure if we'll spend another night here, but we will keep you posted. 

Sunday, June 14, 2015

Post Ictal Post

Josiah had a pretty bad seizure last night. It was different than the other ones he's had.

We are currently in the PICU at LeBonheur because he aspirated secretions during his seizure. He was on a BIPAP machine to help his right lung inflate all the way until just a few minutes ago. So far he's doing well with just the cannula.

He's just now starting to wake up a little more.

Pray he comes out of his drugged state soon.
Pray there is no new reason for this new type of seizure.
Pray he doesn't get any kind of respiratory infection-- he's on antibiotics to head this off.

We're so thankful Stephen was already home from San Francisco-- we picked him up from the airport at 7:45 and Josiah started seizing at 9:30. I could not have handled the situation alone.

Also thankful a high school friend was the charge nurse when we were admitted. Always helpful to see a friendly face when you least expect it.

Will keep you posted

Tuesday, May 19, 2015


I'm so sorry for the lack of updates. Hopefully, most of you reading have talked to us or someone we've talked to recently already.

Josiah's May 1 MRI was pretty much stable. He hasn't had any more seizure activity and side effects from his new dose haven't been too bad. We only went up 1/2 what the neurologist wanted to do originally. We'll follow up with them at the end of the summer to check his medication levels again.

Josiah's finishing his last week of kindergarten work and we are both really excited about that :)!

I'm looking forward to going back to my lil preschool room at MDO this summer. Stephen will be doing some traveling and the kids have a couple things at church they'll be involved in.

Last week we enjoyed watching Josiah graduate from kindergarten with the St Jude school program. They made it a very special day for all of us! Once I get photos transferred I'll put a couple on here :).

We look forward to a (hopefully) calm summer just enjoying one another!

Wednesday, April 15, 2015

It's April and It's Late...

How? How is it already April?? This will be quick since everyone is sleeping except me! :(

Josiah has been doing pretty well with the exception of this past Monday. He had a pretty bad seizure that had us at St Jude all day doing an EEG, blood levels for his medications, and an IV dose of one of his meds. He has pretty much recovered, and now we wait to see how he tolerates a new dose of vimpat. They've moved his MRI up to May 1 (It was May 11).

The side effect that most worries us is 'feelings of anxiety and fear.' He has been struggling a good bit since BelleBelle's passing and it's hard for him (and us) to know what is behavioral and what is medication side effects. Either way, please pray for wisdom for us as we parent him through these difficult emotions of grief in his heart and head. He has begun seeing a counselor and he LOVES it. He calls her his "relaxing lady" since she made him a CD of relaxation tracks.

A phrase has been rooting itself in the most desolate part of my heart ever since Easter. I feel it sprout one more little leaf every time I say it aloud...

"Christ is King and death is not."

Wednesday, February 4, 2015

Five Weeks In

I suppose a 'Happy New Year' is in order even though it is already February.

Looking back over the years of posts I realized this is the longest we've ever gone without posting. Even in the less eventful months there was always the once a month catch-all post. 

I haven't written because I don't have the words. It has already been a grief filled year.

Our dear friend Belle passed away mid- January. 

Josiah and Allison miss her immensely, and walking them through their grief is the heaviest burden I believe I have ever tried to carry. I will not elaborate on this, but I ask that when you think of our children please pray for their hearts to remain gentle and uncalloused as they will continue to deal with death and loss more than most of us will in our adult lifetime. I have to believe the Lord will use these things in their young faith though I wish, as a mother, it were in any other way. Pray these things for Belle's sisters and brother as well.

I counted five or six  fellow St. Jude families at Belle's memorial service and it was a strong reminder of the community cancer families share. The only deeper community I've experienced is with my brothers and sisters in Christ.

So once again I find myself very, very angry with God-- my heart still believing but very bruised. I am thankful He does not require me to keep it together. This is not a blind faith-- it is rooted in Something, a really real Hope that this will all be fixed, redeemed... just not today.

Visiting between chemotherapies: Before Josiah was mobile Belle would always ask why he wouldn't get up
to play with her. Fat lil J had no idea what he was missing!
Belle would tickle "Baby Allison" whenever she got a chance :)
Love this lady and the many things she introduced us to, such as
 "Squirrels In My Pants" and "What Does the Fox Say"-- some good dance parties

He will wipe every tear from their eyes.
He will wipe every tear from their eyes.
He will wipe every tear from their eyes.
He will wipe every tear from their eyes.
He will wipe every tear from their eyes.
He will wipe every tear from their eyes.

Just not today.

Sunday, November 30, 2014


What a crazy week.

Right off the bat, let's get to it — Josiah's MRI on Monday morning was stable. No growth; no change. We'll do it again in May.

This week has been filled with family time. Birthday dinner for my dad, Thanksgiving with about 12947 relatives. It's crazy to be doing it with three kids, but Jude is a champion.

Currently, it's Sunday morning. We're skipping church to have some time at home. The two older kids are playing in the leaves that we need to rake out of the backyard. Jude is napping in his crib and we're re-arranging the living room for the Christmas tree.

I can't help but be reminded how fragile it all seems. This week could have been very different if Monday's results had been poor. But they weren't, so I'm trying to anchor myself in thankfulness this week. It doesn't come naturally to me, but it's healthy.

Friday, November 14, 2014

A Dear Family and GoJGo

As many of you Memphians may have heard, a local St. Jude family recently lost their home in a fire. Not one but three of their five children are St. Jude patients. They have a place to stay right now and a fund set up at Regions Bank. Elnora has been a blessing to me as a fellow local St. Jude mom, and I am excited for the opportunity to serve their dear family.
We are collecting gift cards for some of their favorite places to help right now, and to give the kids something to look forward to. Please contact me via twitter or email and I will give you  more details if you are interested in donating. Thank you so much. 
Well, I'm late in mentioning this but the St. Jude Marathon weekend is just three weeks away!

Click on any of these names to go to their personal fundraising page!
The GoJGo team includes:
Thank you, team! Many of you have already reached your goal and I we are so overwhelmed by your commitment!
Josiah has had a good week or two. He hasn't had any seizures, and he's been a little more interested in school (yay!). Thanks to those teacher friends who've encouraged me so much lately.
I don't know that I'll get to post again before MRI time. We appreciate your prayers for Josiah and our family always but especially for November 24th. It's been a year since that scary MRI that appeared to be slowly growing. We're asking that there be no change between this MRI and last October's.

Monday, October 27, 2014

Last Month

Judging by the mere two posts in September you'd think nothing much happened. Quite the contrary!

First of all, I must say thank you again to all who donated blood, money, and time volunteering to St. Jude in the month of September. Through Stephen's fundraising website you gave $12, 480! That was more than any other fundraising page set up for Childhood Cancer Awareness month through St. Jude Children's Research Hospital. Thank you.

September is a somber month for us as we remember our fellow cancer families who've lost children this year. But this year there was some joy added in as the Lord saw fit to give us a child September 22nd (the day Chili's donated all the day's profits to St. Jude).

Jude Stephen Hackett is now five weeks old, and we are so thankful for his good health and chubby cheeks.
Josiah enjoys singing to Jude whatever comes to mind whenever it comes to mind :).

Allison is a little momma hen informing us of Jude's every 'coo' and cry. We have to remind her that we've done this before...without her, haha.

Josiah is doing okay. We've added a third anti-epileptic medication and have been messing with the dosage to get it right for him. Please pray that all these meds won't be necessary long term. It makes his school day very difficult at times and that increases his frustration level. In that regard, I am so glad it's possible for us to homeschool him this year. Pray for increased confidence and mental quickness despite the side effects.

We have an MRI Monday the week of Thanksgiving.

But before that...

Josiah is turning six!

Next Monday we will gratefully celebrate having Josiah here with us for six sweet years with the Hope of many more to come.

Between the gravity of that thought and post pregnancy hormonal changes I fully expect to cry all that day.

Forgive the run on sentences, the typos, and the bad writing in general. Again, I blame the baby and getting less sleep than I am used to. 

Ended that with a preposition, but I don't even mind.