New web address

This is the last change – promise!

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Sorry for another change; but it was imminent.
Please see the headline section on the new site regarding information on Chad’s latest adventures in the hospital (4/30/09).

Thanks for sticking with us!
Skye, Chad & the girls

I certainly hope this is not a new trend

I awoke this morning, like yesterday, to seizure activity.
He was in bed, thankfully, so I wasn’t as concerned about him hurting himself.

It lasted about two minutes, and he was post-dictal* for about 45 minutes.

*Post-ditcal is the altered state of consciousness that a person enters after experiencing a seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures and is characterized by drowsiness, confusion, nausea, hypertension, inability to talk or form coherent words, headache or migraine and other disorienting symptoms. Also, emergence from this period is often accompanied by amnesia or other memory defects. It is during this period that the brain recovers from the trauma of the seizure.

In the beginning of this journey, we would freak out about every generalized seizure. I would call 911, or take him to the ER myself. After our third trip to the emergency room, a trauma doctor finally told me, “You know, you don’t have to come to the ER every time he has a seizure. He’s going to be here a lot, if you do.”

I dind’t think to ask his neurologist about it at the time. I can’t believe I left such a simple question unasked.

What do we do when he has another seizure?

He was on a therapeutic dose of anti-seizure medication. In my naive mind, that part was over. We were done with the seizures.
I read countless stories about cases similar to Chad’s, and so many of the patients were seizure-free after taking the same drugs Chad had been prescribed.
I was not concerned.
And then he started having focal seizures (just arm and/or leg twitching) on a regular basis, like once a week or so. He wasn’t having generalized seizures except for once every few months. He’s never had generalized seizures (full body involvement with a post-dictal period) so close together, except for when he was newly diagnosed and the doctors were trying to find a therapeutic drug level to stabilize the flurry of activity.

So, what do we do when has a seizure? When should I get concerned and call/take him in for help?

Typically, if a seizure lasts under 3 minutes, and Chad is coherent within an hour of onset, there is no cause for concern.
If there are multiple seizures, with no time in between them where Chad is coherent, that’s a little alarming.
If there is vomiting before/after/during the seizure, that is a little alarming. But not too alarming, if the vomiting and seizures stop within a good chunk of time. Say, 1 hour or so. And if her feels better after vomiting.
The vomiting issue is concerning because it could signal swelling on/in the brain. The brain doesn’t have an effective way of ridding itself from excess fluid, so it sends a signal to your gag reflex. Sometimes the patient feels better after vomiting, as it’s thought to relieve some of the pressure felt. This is the first time we’ve dealt with vomiting at all, but keep in mind we already know there is swelling in that noggin of his; we stopped steroids, the headache intensified, and then the seizure.
I am comforted in knowing that Chad has an MRI tomorrow afternoon.
I am confident everything is fine, and Chad just needs a little longer on steroids, or we may need to investigate another method of reducing the swelling. In either case, we will find out later this week.

As always, thanks for your support, prayers and positive energy. We are so thankful for all of you!

Back on steroids. Again.

Chad came off the second steroid taper on Tuesday. He was feeling decent, and was not complaining of the severe headache like last time.
He felt well enough to join the girls and I for Carys’ field trip Thursday, and parent night at the elementary school later that evening. (Also, Fiona had her much-talked about kittens on Wednesday. More on that & other recent happenings in another post.)
We were silently pleased that we seemed to be off steroids for the time being. We know better than to say such things out loud, you know. As soon as you say them out loud, it comes back to bite you.

And today we got bitten.

Chad’s headache started Thursday evening, and progressively got worse until today.
He was in bed for a good part of yesterday.
Chad & I were sleeping in this morning, as the girls are away with their grandparents. In fact, I was sleeping very soundly, until about 6:30 – when I heard him screaming my name from another room. It took me a few seconds to realize where he was, and a millisecond to realize he needed me because he was having a seizure.
My heart sank.
While I’m thankful that he hasn’t had any seizures since surgery, I was secretly hoping he would had far less – which he is. And I was silently hoping that we were done with seizures. We’re not.
The seizure happened immediately after vomiting – and then more vomiting later in the day.

So, I called the neurologist on call at Wake Forest, and she agreed that the swelling was causing these symptoms.
Back to steroids. And she added a new seizure medication, Carbatrol, to his regimen of Keppra. Keppra has been working well, but he’s pretty close to his max dose, so adding another medication in combination with it is our next option.

Thankfully, Chad already has an MRI scheduled for Monday afternoon. And we already have an appointment with Dr. Tatter this week. We’ll figure out where to go from here.
We also have an appointment with the radiation oncologist on May 5th, so things are moving along.

It’s apparent that things never go as smoothly as we’d like, but that’s okay.
I like to think we’re experiencing a few more speed bumps in our race to survivorship – but we’re still getting there.

One month later

I seriously cannot believe we were anxiously awaiting news of Chad’s surgery progress this time last month.
Sometimes, it feels like it was just yesterday.
And, at other times, it feels like it was a lifetime ago.

Chad is doing well. He still has a major headache that is not relieved by any over-the-counter or heavy-duty prescription pain relievers.
He’s almost done with this second (and hopefully, final) steroid taper. His headaches seems to increase with intensity when we get to this stage of the taper, so we’re paying close attention to it.
Apparently, the headaches are caused by two issues:
1) the body doesn’t produce steroids of its own when you are taking artificial steroids. When you start to wean off artificial steroids, your body has to work overtime to produce enough of it’s own steroids for your increased needs, which leads to a headache.
2) there is a possibility there is still some irritation, or swelling, in the brain. Each patient recovers from this type of surgery differently, and everyone heals at a different rate.

Chad is still improving. He had a huge improvement when he came off steroids the first time. If you remember, he even wanted to go back into the office. However, since he’s been back on steroids, he’s been a little quieter. He’s been extremely tired and unable to sleep decently. He’s still pretty indifferent. And he is bored.
I took him into the office to pick up some files to work on a couple of weeks ago. Later that same week, he went back on steroids – and he hasn’t felt like doing any work at all. It’s like he is in a fog, and can’t focus on anything for a length of time.

I’m waiting for a huge improvement in the next few days – and I bet Chad is too.
It has to be hard to be in a medically-induced state you cannot control.

We will meet with Dr. Tatter next week, on the 30th, for a post-operative evaluation in Winston-Salem.
And on May 1st, Chad has an MRI at WakeMed. I had hoped to move the MRI to before we meet with Dr. Tatter so he could review it – but they are all booked, and this MRI appointment was scheduled months ago.

Next week, I’m sure we will receive great news about Chad’s progress.
I hope to see the MRI taken shortly after surgery. I need to see that they removed such a large chunk of the tumor.

Of course, the best news about the surgery is that they removed such a large chunk. That, alone, is enough to celebrate. It’s also fantastic that Chad has not had a single seizure since the surgery. This is a huge reason to celebrate, too!

He was having a simple seizure (tingling and shaking of a leg and/or arm) about once every week or two; and a complex seizure (full body involvement with a period of paralysis or extreme weakness for 30-45 minutes post-seizure) about every 3-4 months. I am hopeful that Chad will be able to slowly taper off of Keppra, his seizure medication, until he is at a very low dose — or no dose at all!
Only time will tell.

As always, we are thankful for everyone’s love, support and encouragement. It really means a lot to us to have so many people rooting for us.

What day is it?

Excuse the confusion on my part. It’s been a strange week.
It was Spring Break around these parts, so Carys had the week off from preschool as well.
I peppered some much-needed appointments into the week’s schedule, and called in reinforcements (aka Nana).
Tuesday, I had to be up & at ’em bright & early for a dental visit, complete with a cleaning and filling repair. Not my favorite part, but I do love my dentist. She’s fabulous.
Later that same day, my mom & Carys had their cleanings. So we were a bunch of cleaned-toothed (or is it teethed?) ladies around here.

On Wednesday, Carys & I had a much anticipated Mommy-Daughter Day. I let her pick whatever she wanted to do, which I promptly regretted. Fortunately, she didn’t demand we visit Miley Cyrus or go to Build-a-Bear. She wanted to go to lunch. Just us big girls. At the Japanese place we both love. What I didn’t tell her was that she had an endocrinology appointment at 1pm….see, I buttered her up to take her to the doctor. Mommies are sneaky like that.
Fortunately, the doctor visit was short and sweet. No dreaded blood draws. No panicking five-year-olds leached to my leg, screaming at the top of her lungs that I was the worst.mommy.ever.
So, then Carys has the bright idea for ice cream.
I oblige. It’s not every day a genius preschooler calls the shots, so I just rolled with it.
We giggled over small scoops of dairy heaven, and called it a day.

You know that part in movies, where you know something is about to happen, and they play that little musical segue.
Well, please insert that musical segue here.

“Mommy…my ear hurts.”

Ruh-oh Shaggy.
I ask her a few questions and immediately dial the pediatrician, who is #7 in my cell’s speed dial, FYI.
Apparently, the office is short-staffed due to some swanky new CPR training. I make an appointment for the following morning, and try in vain to recall the phone number of the office we used for Carys’ ear tubes. (Yea, don’t get me started – no tube in the right ear, and this is the 3rd ear infection since it’s come out! Left ear with tube = happy little ear with no problems)

As soon as we pull into the driveway, she tells me she thinks it hurts really bad.
Which is telling. This child doesn’t complain. Ever. Well, about hurts & pains and stuff. Other complaining…she all about that!
I walk in, tell my mom we’re leaving. Again. Straight to Urgent Care we go.

We just beat the after-work crowd that frequents Urgent Care. We don’t have to wait long at all, and I was so glad. You should have seen the menagerie of people strolling in the door as soon as 5:00 passed.

We left there with a hefty prescription.
For an ear infection.
a sinus infection.
a stinkin’ urinary tract infection.
That poor child! She’s not said one word about feeling bad – and she usually doesn’t. I am getting really concerned about her kidneys since she has no symptoms, and has had UTIs constantly for the last 18 months without anyone catching on.

So, we’re on the path to being well.

Well, not exactly.

I was warned that the medicine was strong and it may upset her tummy.
And it did.
No further details, because I doubt you need further details after the words tummy + upset.

What I did not know is that her bouts of tummy + upset, weren’t actually from the antibitoics.

I, naively, thought it was the medicine until about 10:37 last night.
That’s about the time I thought my innards wanted to permanently reside outside of my body.
I slept laid on the couch, clenching a bucket and running to the bathroom every 10 minutes, until 3am when I refused to watch any more infomercials and ‘8Os reruns.

And what’s even worse?
We passed it around to Miss Hannah.
I am SO sorry Jones family – I had no idea we were harboring a tummy bug.
I really hope that no one else in our household (or theirs) gets it.
It was short-lived, but it was also quite heinous in the wee hours of the morning.
I feel much better today, but my tummy is a little touchy.

So, what day is it?
Friday, you say?
I seem to remember something about cooking on Fridays?
Um. Yea. That’s not happening today.
Unless I can make a feast from a few stale, crumbly saltines and generic diet Sprite.

Have a good weekend.
Hopefully, I’ll have something more jolly for you the next time I come ’round. 😉

What we’ve been up to…

We’ve had a busy couple of weeks.

Last weekend, we celebrated our little buddy Faith’s fifth
It was great fun, complete with a bouncy house and thickly-frosted purple cupcakes that stained CaiCai’s face for a few days.
cailyn-2Those same thickly-frosted cupcakes were responsible for a sugar-induced meltdown around 7pm that night.
See this sweet little kid? cailynShe disappeared around 7pm, and was replaced with a four-headed monster that kinda resembled my child, except for the gnashing of teeth, screaming, spitting and profuse crying.
I put her in time out at 7:15, and didn’t see her until 8:30 the next morning. (And no, it’s not because I forgot she was in time out. She passed out and slept off the sugar high.)

This past weekend, we celebrated another little buddy’s birthday. Landon turned four!landon
To celebrate, we had tons of cake and goodies — and a Easter Egg hunt, of course.

Here are the girls, opening their eggs and being good only because they knew the EB was supposed to be coming that night…

And here’s another picture of my sweet Carys, just because. She’s such a character, that girl.
Oh, and Chad had a good weekend. He is back on steroids, but it’s a lower dose than he was previously on. Evidently, there is no standard dose of weaning for steroids. Well, there is, but it’s more like a standard start. Once you’re weaned off, you may have to go back on. Which was the case for us. Chad weaned off last Monday, but developed a nasty headache that wasn’t relieved by OTC meds or Vicodin. So, we suspected swelling and an unreadiness for weaning from synthetic steroids were the reasons. We were right.
He’ll be on a low dose for about two weeks, and then we’ll see where we are. He may be on them longer than that; only time will tell.
He feels better now, and isn’t really confused like he was last time around. He is still having a little difficulty though. He still has the headache, and is resting as much as possible. I just try to stay out of the house as much as possible and keep the girls quiet busy.

The girls & I planted our garden yesterday afternoon and are ready for our Carolina Spring temperatures to come back in full force.

Friday Feast may come back in a week or two. I’ve been making old-reliable standby meals that aren’t very noteworthy. And, fortunately, we’ve received a ton of meals from friends & family members. I might have forgotten how to cook…but I doubt it!

We hope everyone had a wonderful Easter weekend. Have a great week!

Guess who is going back on steroids?

Chad is going back on steriods. Apparently he stopped them too soon and is having severe headaches. Luckily his doctors have the same opinion and agreed to put him back on them for at least another couple weeks.

It IS the steroids, after all!

This morning, Chad took his last dose of his Decadron (a glucocorticosteroid to counteract the swelling in his brain) taper. He started out taking quite a high dosage, 16mg, about two weeks ago. He took 2mg this morning, and he’s done.

I thought the steroids might have something to do with the daze he’s been in. After some research, I’ve found many others that have listed confusion as a side effect that’s not exactly listed on the informational handout from the pharmacist. It’s not listed. At all.

Good to know I’m not crazy.
And fabulous to know I’m getting my husband back!


Miraculous things are happening around the Lanford House.
Chad has been talking so much more since yesterday.
He responded to some emails.
The Tarheels beat Nova last night – the miraculous thing about that is we were both awake to watch it.

And this morning, Chad said he might want me to take him to work tomorrow.
Tomorrow. As in Monday, April Sixth. The day after today.
Before surgery, he has told his boss he anticipated being out for about two weeks. Of course, this was before we knew what recovery would be like. He is getting better every and I’m sure a good whopping dose of normalcy would be good for him.
But I just worry that his extreme boredom may cause him to do too much to soon.

He may change his mind by tomorrow, based on his sleep quality tonight.
We’ll see.

I’m glad he’s bored. Boredom sparks change. And change is good, at least for us. Especially for Chad.
I’m glad he’s feeling better.
I’m glad he’s talking. I was starting to talk to myself. And I was irritating myself. Really.
I’m glad he’s feeling like going outside,  even though I have to fuss at him every time I see him wandering in the woods, clearing debris – or walking around the front yard with a shovel.
I’m glad he’s sleeping well, because it really makes a huge difference.
I’m glad the girls are handling all of this stress well.
I’m glad the sun is out and it’s gorgeous outside.
I’m glad today is the last day of his steroid weaning. I think it will make a huge difference once that is all out of his system.

I’ll let you know how tomorrow shakes out…


We love you very much & can’t wait to see what this next year brings you (and the rest of us).

Happy, Happy Birthday!!!

Look what you missed….

Coming up

April 3: Happy Birthday to Chad!
April 7: Cailyn's 37th dentist trip
April 8: Happy Birthday to Faith!
April 12: Happy Birthday to Landon!
April 23: Carys' field trip
April 30: Chad's 1-mo post-op eval

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