Tuesday, April 8, 2014

Adjustments

Josiah is doing pretty well. He's been on the full dose of his new medication for two days now. He is tired and losing a little bit of his appetite, but hopefully both of those things will normalize soon.

He will have his follow up EEG April 24th.

Today was his biannual eye clinic appointment. His left eye has always been weak, but it has gotten much worse since last fall. It could be from time off patching because of headaches and surgery. It could be so many medications making him, understandably, not want to work very hard. Doesn't matter. Before just skipping ahead to glasses we're going to "patch aggressively" as the doctor put it. Three to four hours a day everyday :(. He is going to wish for the bygone days of patching two to four hours a week. 

He takes everything in stride, sweet child that he is: Leg braces, wrist extenders, arm sleeping wraps, eye patches, elbow extending braces, constant reminders to stretch hiiiis woooords ooouuuut. If it were me I would've screamed, "Enough already! This is too hard!" Somehow, he still looks forward to every Wednesday 'playing' with Jess, Kelley, and Angela.

Talk about perseverance.

Friday, April 4, 2014

Waiting

As I sat down to eat dinner tonight, I picked up our copy of Josiah's Neuropsychology Report from his stay at LeBonheur's EMU back around his birthday. As I read through the report, this sentence jumped out at me:

However, Josiah became silly and somewhat disinhibited toward the end of the testing session.

If there is a phrase that describes Josiah, that's it.

Sadly, I don't feel all that silly (to be fair I rarely do) after this week. Josiah did super well during his EEG on Thursday, but the results show a lot of pre-seizure activity, all over his brain. Some of these areas are new from previous EEGs.

Over the next 6 weeks or so, we'll be weaning Josiah off his Keppra and adding Zonisamide. This new drug should help this activity at bay. We started it tonight, and are keeping a close eye on him for side effects.

He'll have another EEG in two weeks, and his MRI is still scheduled for May 5, the week of Josiah's 5-year anniversary of being a cancer patient. Clearly, all that's linked in our minds, but new images will tell more.

Merri was able to spend time with Dr. B. looking at previous MRIs, and I think we both feel better about surgery in December. While this new activity is scary, he is much better off than before.

Pray that the gradient change to meds will go smoothly, and that he'll have no side effects from the new drug. Pray for us as we wait.

Monday, March 31, 2014

EEG Time

Josiah continues to have breakthrough seizures one of which seemed pretty uncomfortable for him like the ones from last fall. Neurology has ordered an EEG for Thursday morning with a blood draw following that to check his levels with this new lamictal dose.

Between Josiah's continued seizure activity and seeing our friends deal with the loss of their daughter last week we are indeed raw. We have asked for an appointment with Dr. Broniscer to look over Josiah's last scan together. If you recall, we only spoke by phone about the vague pathology report and MRI findings in January.

Stephen and I both feel it would do us good to see the hole left from the December surgery. If would be immensely comforting to see that hole overlapping with the brightened area of his tumor. This meeting will not change anything. It is simply for our peace of mind. May 5th seems so very far away.

Please pray for Josiah. He took the passing of his little friend as he takes most things: With genuine joy.

"Mama, I'm so glad Anna is in Heaven with Jesus now! 
Now her new body will not be sick anymore!!" 

Oh dear, sweet child. I am so glad for your heart that you don't know how wrong this is yet-- that you can't see and feel the brokenness of its reality. On the other hand, I am so sorry that this is your normal-- to have played so many last playdates at only five years of age.

Today as I read another friend's update on their child Josiah asked what I was reading. When I told him he immediately replied, "Is she dead?" He was fearful. My heart sank so low.

As happy as he is he is still processing things in his own head and heart. Please pray he asks us all of his questions as he does process.



Wednesday, March 26, 2014

Thursday, March 20, 2014

This Spring

Josiah is doing alright. In the past month he's had two headaches and some strange dizzy spells. We were expecting something more "exciting" might be coming soon. Sure enough, he had a grand mal seizure early Tuesday morning when he was still sleeping. Thankfully, Stephen heard him. Thankfully, we got it to stop with two medications. Thankfully, we didn't have to go to the hospital!  

I can't emphasize enough what a difference that made for us!: No pokes, no ambulance, no leaving Allison behind, no over night stay. He got to sleep off his drug coma in our bed snuggled with me. After talking to the neuro clinic at St Jude we upped his lamictal dose. His MRI date will remain the same at this point.

I love Spring and the renewal that comes with it. Projects abandoned back when it was too cold to paint or dig quickly take up an entire weekend. Plants I forgot I had start to peek out of the dirt with new leaves. Most days the happy thoughts outweigh the ones I'd like to forget.

This May will mark five years from Josiah's diagnosis. His MRI will be three days before that anniversary. That alone makes this scan emotional enough, not to mention the past nine months he has been through. I write this to just ask you please to be in prayer even now for this scan. I've heard someone say that prayer isn't meant to change a situation but to change us. Pray that Stephen and I would be ready to hear what we hear May 5th. 

We know one family who lost their son earlier this month. Dear friends of ours are caring for their daughter in what may very well be her last days with them here. Pray for the George and Ramirez families.


Friday, February 28, 2014

Represent GoJGo in Nashville

If you're running or want to help support the St. Jude Country Music Marathon & Half on April 26, there are a couple of ways to do it:

Just like the marathon in Memphis, the County Music Marathon helps fund the hospital, and pay for things like MRIs, chemo, therapy and more. We haven't paid a dime to St. Jude for Josiah's care, and that's only possible through events like this.

Monday, February 3, 2014

Still Truckin'

So sorry for the lapse in updates. It's because we've been getting back into the groove.

We are so proud of Josiah. He continues to improve, and seems to be himself most days. This past week was our first week all being back at MDO together. Josiah has had to adjust a little, but today and last Thursday he did great! I am just so thankful I could be one of the teachers in his room this year. God knew what Josiah would need this year and what I would need as a mother. I love being able to be a fly on the wall: Watching him interact with peers, seeing how he does his work without me hovering, getting to see who he is without me.

Being back at work has been a tremendous lift in my spirits. It's nice to be busy, but not at a hospital! Of course, being back also means getting some new germs. I have brought home a cold/cough that I am hoping to keep to myself.

Josiah continues to be seizure free as far as we can tell. He will be seen by neurology in a couple weeks.

We are thankful for our friends who've had good scans this month, and are looking forward to seeing the infamous BelleBelle in a couple weeks in Memphis. Josiah basically giggles the whole time she's at St. Jude. He's never been one to hide his joy.... about anything.

And thank God for that because he will never know how much we depend on those smiles and giggles some days.

Pray for good scans when it's our turn in May.

Merri

Wednesday, January 15, 2014

Mixed Messages

After many delays we finally spoke with Dr. Broniscer this morning. The main delay was that they wanted the most senior pathologist (the expert) to view the cells before giving a final reading. 

Josiah's tumor is infiltrative in that it has no borders and can mix in with healthy brain tissue. Dr. Boop provided a good sized sample for the pathologists, yet they could not find any cancer cells in it. Under a microscope there is nothing suspicious although the MRI clearly shows evidence of some type of progression/ growth over the past year. It seems that because his tumor is so slow-growing they can't really nail it down. It could be another year (or more) before there is enough change that would warrant treatment.

The immediate plan is to scan again in early May. Chemotherapy is not off the table. Dr. Broniscer was clear we should not let our guard down, but at this point we will just watch Josiah carefully. We will not start chemotherapy before May unless something changes.

We can't say that we are particularly happy with this plan. Chemo, even with all it's toxic effects, is at the same time our warm, fuzzy security blanket-- proof that we are fighting. Not having that is slightly terrifying. On the other hand, we are excited at the prospect of a chemo- free winter and spring. I am cautiously optimistic that Josiah and I can finish out the preschool year with Mrs. Joyce and all his little friends.  

Josiah has done really well this week. He continues to work hard in his therapy appointments. He is still a little low on confidence physically, but I think the more he gets back in the swing of things the stronger he will feel. He has been seizure free since the surgery as far as we can tell. 

Pray for Stephen and I to keep Joy, and to be thankful not fearful.
Pray for whatever is showing up as growth in Josiah's MRI: that it would be anything else instead.

Thursday, January 9, 2014

Thursday

And Thursday has come and gone.

We were hoping to hear something from Josiah's doctor by now. The nurse practitioner called this morning to let us know that they decided to run one last review of his tissue sample, and that Dr. B would call once the report was in. It seems it won't be in till sometime Friday.

We have been praying for the team to agree and to have a very clear picture of what Josiah needs. We are all for double and triple checking before we start any kind of treatment.

Now that we are mostly well I feel a lift in our collective spirits. We've gotten out to play with friends and have gone to the library this week. It's been good for everyone. Stephen is, of course, catching the cold Allison gave to Josiah. You can pray his blehness is short-lived.

Still here,
merri

Saturday, January 4, 2014

Another Weekend

Thankfully, Josiah was cleared for his MRI thursday. He did great with anesthesia! Lately he has been  cranky and nauseous upon waking up, but not this time :). The MRI result showed no new area of concern and his surgery site is looking good. All good news!

Josiah's complete medical team will meet Wednesday afternoon-- please pray that they will be in agreement in their plan for Josiah. We will hear from E clinic Wednesday evening or Thursday sometime.

We are almost all well! Josiah's voice is back and his cough sounds a little better. Between our cold and everyone else's norovirus and flu we've been holed up pretty much every day since Christmas. Thank you for the calls and texts this past week. I'm sorry i haven't responded to many of them.

love,
merri