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

Thankful

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.

Love,
Merri


Thursday, September 11, 2014

Childhood Cancer Awareness Month

Many of you internety people already know Stephen has set up a fundraising page on his website, 512pixels.net, for the month of September. In just eleven days $8,637 has been donated! Thank you so much to those who continue to support our family and much more importantly the mission of St. Jude Children's Research Hospital. We continue to be humbled by your generosity and compassion.

September stirs up as many emotions in me as the month of May, when Josiah was first diagnosed.

We have gotten to know and have had to say goodbye to so many dear children. Some fought for years enduring multiple treatments. Others only fought for a few months before they ran out of treatment options. Please keep these grieving families in your heart and mind throughout the rest of this month especially.


Since we last wrote Josiah had a seizure that got us a trip to St. Jude in the middle of the night, but not the ER! We are continuing chiropractic therapy. I talked the neurologist out of increased the medication I hate, and just changing the one with less side effects. It still made him sleepier, but we're used to that. Next time he seizes like this though he wants to add a third medication. We will have that conversation when/if the time comes.

He's also gotten glasses which are even more adorable than you are picturing right now. We will also be patching on top of the glasses-- the patch alone just didn't seem to be enough. So far, he loves them and is very responsible about the 'suitcase' they go in when he's not wearing them. In fact, he sleeps with the case haha! Let's hope the novelty doesn't wear off!


No, the baby isn't here yet, but the shirt was burning a hole in his drawer.
He had to wear it right after I washed it.







Monday, August 4, 2014

Here We Go!

Josiah is starting his third week of kindergarten at home, and he's doing pretty well with it. It has been confirmed over and over again that homeschooling is what's best for him this year. Some days he has to nap at 11:00 AM, and I'm so thankful I can just adjust when we do his work  and it isn't a big deal. If he is super moody and irritable we can save handwriting for later after he's napped and is feeling more himself.

Allison will start preschool Monday in the class that I had the privilege of teaching in the past two years. I am sad I don't get to be her teacher, but I know she will be fine. It will be good for Josiah to have my full (minus what the baby needs at the moment) attention for a few hours.

We checked in with neurology last week, and Josiah's been doing really well.

We have decided to pursue some alternative seizure treatment via upper cervical chiropractic care. Josiah's atlas bone (at the top of his spinal column) has stayed in the correct position for two and a half weeks now!  He hasn't had any headaches or neurological episodes yet.

If we can get to six months (three months is the record) without seizure activity we may get to go down on his meds! Who knows what will happen in the next six months, but I am really excited at even the possibility of getting off meds. His body is doing really well adjusting right now so we are thankful!


Swim Lessons

love,
Merri


Wednesday, July 9, 2014

It's July Now

I am amazed at how quickly this summer is going even though our day to day summer schedule isn't really different from what we do the rest of the year.

Praise all that is Holy, we had no medical drama while we were out of town: Not even a headache or a fall down the stairs! It was truly amazing. The kids had a great time with the Texas cousins, and they talk almost daily about them. :)

We've also gotten to hang out with one of Josiah's favorite girls (yes, there are a few;), BelleBelle, this week at St. Jude. Josiah asks about her every day now that he knows she's in town.

Josiah's eyes have been improving a little according to his check up last week! That was quite a surprise as we expected to get fitted for glasses. I am so glad some of this patching is finally paying off for him.

He did have a seizure we were able to stop with one medication (versus the usual two, plus an ER visit) Sunday. Thankfully, he could sleep it off in the comfort of his own bed.


So we go up on meds again and blah blah blah...


How many times have I written that sentence in the past twelve months? We are very frustrated as parents right now. We trust our doctors to do what they know to be best, but we are beginning to look at more alternative treatments for seizures.

We are Josiah's best advocates-- please pray for us as we try to do that wisely.

Pray against side effects of the increase of  the medicine we already hate:
extreme fatigue and mental slowing, moodiness, anxiety attacks, loss of appetite...

Pray also for me as we delve into kindergarten at home here in a couple of weeks. I know this is what is best for Josiah this year, but I am already discouraged for him. He is going to have to fight through the mental fog to just get his schoolwork done each day. As a mom (and a pre-k teacher!) I so want him to enjoy school.

Pray that we would just know how best to encourage Josiah when he is feeling out of control with these meds.

Baby Brother is coming in ten weeks. Pray that he comes without a big fuss, and that the big kids feel as loved as they truly are.

It looks like Fall 2014 will be another interesting one to remember.

I'm not sure I'm over Fall 2013 yet.

Thanks for sticking with us.





Sunday, June 15, 2014

Same Ole, Same Ole...

Josiah is doing pretty well.

He's beem dealing with some breakthrough seizures the last couple weeks so we've gone up once again on his newest medication. He's on the maximum dose for the lamictal we started last fall when these seizures first started increasing.

We're continuing to patch his good eye in hopes his weak eye will catch up without glasses. But that doesn't help his dizzy spells much :/.

It's been about six weeks since his last grand mal that landed us in the ER so that's pretty exciting on one hand. On the other, it kind of puts Stephen and I on edge expecting the next big one any night now. Six to eight weeks seems to be his new cycle for big seizures.

The kids and I will be going to visit family in Texas at the end of the week. Please pray we don't have to visit any new hospitals while we're away from home. I am going to pack my nurse's bag full to the brim!

Happy Father's Day, dads and male mentors of all ages!