We took Haille with us, my sweet niece from Tennessee. She has never been to the beach, so we had SO much fun showing her around.
She informed me that she LOVED it — but could have done without the sand.
Me too, girl. Me too!!!

We took a ferry over to Shackleford Island in hopes of seeing the wild horses. No luck. We walked and walked, and found lots of horse poo — but no horses. I think the little chatty ladies with me might have scared the horses off if we did get within earshot. Some of our ferry-mates say they saw them — and if we had walked for 5 more minutes, we would have seen them too.  Oh, well.
The girls did find TONS of shells there; and I”m happy to say that we started Haille’s shell collection off right!

We also visited the aquarium at Pine Knoll Shores, the Beaufort Maritime Museum (arghhhh, Blackbeard!), ate lots of great seafood and logged a lot of hours soaking up the sun at Atlantic Beach and Radio Island.

Here – see for yourself!

While we were in Beaufort, Chad had a fall.
I heard a loud noise and ran upstairs to find Chad on the floor and a little confused.
From what I’ve pieced together, his right leg just went numb and he fell. Since that time (Tuesday evening), he’s not been himself. He can’t really feel his right arm or leg and is having more difficulty walking. He is also having more difficulty stringing together sentences; he just can’t find the right words.
For example, he was in a tizzy last night about not being able to find his eye drops. He was adamant that he needed his eye drops and they weren’t where he left them (on top of his dresser). He was getting very frustrated, trying to explain what he was looking for. I found the eye drops, and he just grew more frustrated, and told me he wasn’t looking for those eye drops. Finally, I figured out he was looking for his chapstick.

On Thursday evening, I called hospice after hours for the first time to inquire about additional pain meds. A nurse walked me through the medications in Chad’s comfort pack (a box of emergency meds I can use if he’s in pain or has a seizure) and we were able to help him feel a bit better.
On the way home Friday, I talked with our nurse and let her know the changes I’d witnessed this week and set up a consultation with the on-call nurse for today (Saturday). She came out and assessed Chad’s pain level and neurological health.

I knew something was going on. And after talking with the oncologist, the nurse confirmed that Chad’s new/worsening symptoms are signs for disease progression.
What does this mean?
Chad’s tumors are growing quickly. And they are causing pressure and swelling in his brain. The pressure is causing the numbness and loss of sensation in his right arm/leg, the word issues, and confusion. He is walking with a cane now, and drags his right foot. He actually has an abrasion on one of his toes from the way his toes curl under when he walks. (He had to remove his shoes at one point this week, in hopes of walking more steadily). He is unable to hold a fork or spoon properly, and is unable to put enough pressure on a pencil to make a mark or form a word.

His steroid and pain management plan has been increased. The steroids will reduce the swelling and allow Chad to have more quality time, hopefully. We’re still trying to find a pain management routine that works consistently, though.

We are almost done with traveling, as I fear that being so far from home isn’t the best idea in the world right now. The nurse and doctor told us that they were very concerned about us leaving again, but also understood what we were trying to do; as much as possible for as long as possible.
Every day with a meaning; every day a destination.

We are leaving again tomorrow for Tennessee, to visit Chad’s sister and brother-in-law.
We haven’t seen them since June 2009, and I am looking forward to having most of the Lanford Clan together for a few days.

Great Wolf Lodge (Concord) – LOVED!
Lazy 5 Ranch – LOVED!
Discovery Place – LOVED!

We leave for Beaufort next week, so stayed tuned for the second installment of our Summer

Bring. It. On.

I am a list maker, and I’ve been checking things off my list at rapid speed this week.
Which is good.
But I also feel like I cannot sit still and constantly have to be doing something.
Chad told me I need to slow down.
I’ll have to try that next week while on vacation…

Anyway, our bustling week didn’t technically start until Wednesday. Monday and Tuesday were pretty low-key.

On Wednesday, we attended an employee appreciation lunch at Chad’s old office. They typically hold it much later in the Summer/early Fall, but they moved it up so Chad could attend. I thought that was so sweet of them. They have been so good to us in the last few years, and I know for a fact that they miss my husband being in the office everyday. He misses them, too.
Here is a snapshot from that day.

On Thursday, we met with Hospice. A social worker and nurse came out to the house for a information session. Chad was in bed during the majority of the meeting; I think the previous day really wore him out.
We made the decision to move forward with Hospice, and signed the paperwork. One less item off my list.
They mentioned a few things we might need before our team arrives (after our Great Wolf Lodge adventure next week)..and they were on their way.
Thursday evening, some of our dear friends came over for dinner. I cooked – which I haven’t done in a while. It was nice to catch up.

On Friday, I was surprised with an arrival from Hospice – a cane that we had decided might be useful during our travels. Chad walks fairly well, but does have his moments of being unstable.  We also received two FedEx packages of medications. He’s going back on steroids…but that’s a discussion for another post.
We met with some of Chad’s former co-workers for lunch. More great food, good friends & much laughter.
Then we met with a pastor pal of ours for coffee.
Chad was so tired at this point, so I dropped him off at home and ran errands all afternoon.
We met with our visiting friends at Rush Hour Karting, because Chad wanted to challenge his college roommates to a race.

I do believe they had a great time.
But you judge for yourself.

We ended the night by busting our guts at Logan’s. Blue Moon, ribs, yeast rolls. Then a trip to Goodberry’s to round out the evening.
I swear, I still can’t think about eating. We ate more food on Friday than I’ve eaten in the last week.
Yes. I’m serious. It was all so good, too!

On Saturday, we hung out around the house with Brian until he had to leave for the airport. He brought us breakfast from Bojangle’s…which was, of course, divine.

It was so good to see Trevor, Kathy & Brian. It meant so much to Chad to have them here for a couple of days.

–

Plans are starting to shape up for Chad’s Friends Gathering next month.
I have nailed the location down to Johnston Community College Performing Arts Center (I think…ha!) — and the date is almost firm. I’ll share details as soon as I have them.

–

We leave Monday for the Great Wolf Lodge in Concord and a day trip to the Lazy 5 Ranch nearby. We’ll also being seeing our buddy Leigh S. — another fun, full week!

I moved two of Chad’s upcoming doctor’s appointments from August to last week.
They both happened to fall on Friday, which was a hassle, but also nice to have out of the way all at once.

First was oncology.
They hadn’t yet received the MRI report from Dr. T, so they were equally shocked to hear the news.
We briefly discussed Chad’s decision to forgo treatment. And then we started another discussion – about hospice.

We completed the appointment, armed with our PA’s home and cell phone numbers.
We just adore her, and I think the feeling is pretty mutual. We have been with her from the very beginning, and she was always genuinely happy to see us.
The PA & I hugged and fought back tears as she told me to be strong, have faith, and find a bright spot in every day.
I told her I knew no other way.

We had some time to kill before our next appointment, so we headed to the mall to check something off my list.
We made our way into the first jewelry store we found and looked around.
We were guided to a certain counter, and we found just what we were looking for.
We left with two rings; each one to represent the month is which our daughters were born.
Gifts for our daughters’ 16th birthdays.

We grabbed some lunch.
Didn’t talk a whole lot.
Chad was getting tired, and I hoped the next appointment would go quickly.

Second appointment.
Neurology.
We met a new PA, and I think not having a history with her might have made it easier to give her the change of Chad’s status.
We all discussed our plans for the Summer and what our goals were.
And the conversation was lead back around to hospice…I sense a trend…
–

In the past, I didn’t really understand the role of hospice.
Until 2007, I never really knew anyone who was terminally ill or needed any kind of medical care other than an occasional blood draw.

Since dealing with hospice during my grandmother’s cancer fight, I knew a little more of what to expect. But I still had questions about hospice; specifically what it means when you call them in. Chad & I both felt a little uneasy about calling hospice at this point; he just doesn’t look, act or feel the way I would think someone needing hospice would look, act or feel. I had in my mind that he would need to be extremely frail and unable to care for himself any longer.

But that’s not true.

While we don’t feel we technically “need” hospice right now, we are going to move forward with them.
The hospice nurses will need a baseline to gauge Chad’s condition in the future. They need to get to know our family and our routine. They need to get to know us. And we need to get to know them.
They won’t be coming in our home all the time, right now. In time, it will come to that, and I am grateful to have the resources to help take care of Chad when I need it most.
And they provide resources for the girls; therapy and grief counseling. That, alone, is a huge burden lifted.

All of this is based off a conversation with the oncology social worker, and we’ve yet to actually talk to a hospice representative due to the holiday weekend. We’re not in a hurry, but we’re glad to handle this up front. We’re more at ease knowing that the difficult part of our journey will be met with a few more helping hands.

–

So, I guess we’re moving forward. No other direction to go, after all.

This week, we’ll be spending time with some friends from out-of-state and Chad’s former co-workers.

Next week, our adventures begin!
I booked our trip to the Great Wolf Lodge, which will be followed by a day trip to the Lazy 5 Ranch.
Our beach and mountain trips may not happen as planned, but we’re still figuring things out.
We’ll be going to Tennessee to visit Chad’s sister and her family.

I plan to be at home for most of August, as Carys will need to get back on schedule before school starts.
Our friends gathering is in the works; and will be on a Saturday in August.

More details when they’re available.

So to answer the first question many people have; No, it doesn’t make it easier to hear when you’ve had time to “prepare.”
I don’t think it’s easier to handle or cope with; you’re just not as blindsided I suppose.
We knew it was coming. Eventually.
I just didn’t think that day would be Tuesday.

I’ve received so many emails, phone calls, texts — thank you so much for your outpouring of love and concern for our family.
We are so lucky to have each of you in our lives.

There are so many questions lingering out there. And I do have some answers. Maybe not all; but some.
I’m sure I’ll end up doing a few of these Q&A posts in the future as the goal of our family blog is to preserve our memories through this journey — but to also offer help to any other families that may be in a similar situation.
So, yes I will publicly answer questions. I do not mind. It makes me feel like I am doing something other than twiddling my thumbs.

How much time does Chad actually have?
We do have an anticipated timeline, but we are not sharing that publicly.
Guessing the length of time a person has left is just that — an educated guess. It’s not exact.
We don’t feel that the quantity of time is necessarily important; but we do realize that we just need to do things a bit more quickly than we had planned. Which doesn’t seem to be a bad general rule. If you want to do something, why wait?
If it turns out we have “extra” time…well, hey, that’s a gift I will willingly accept.

But I just saw Chad. He doesn’t look sick. Maybe the doctors are wrong?
Maybe they are.
But I can tell you that I’ve been researching the stages of brain cancer for a few years.
And I can physically see the gradual progression of symptoms.
I saw the scan. Which, by the way, Chad wants to share with you soon.
We specifically asked Dr. T about the symptoms we’ll face and his best educated guess (again, this is not an exact science) is that Chad’s symptoms will not get a whole lot worse.
He will start having more difficulty moving around. And then will get more & more tired. He may or may not start saying strange things out of the blue.
His headache shouldn’t get any worse and he shouldn’t develop any kind of generalized pain.

What do you need? How can I help?
I’m sure I will need lots of things. But as of this moment, I don’t know what those are, really.
I am planning several short trips for our family for this Summer. If you would like to help me with that, please email me.
I will need assistance with meals and other various things later, but that’s not right now.
I will, in time, start a list of things I might need to free up my time and allow me to focus solely on Chad & the girls.
I find it difficult to accept & ask for help, but I am trying very hard to let go of that so I can enjoy our family time.

What about a second opinion? You should get one of those.
When Chad made this decision, he did it with all available information.
Since this journey began, we have sought the opinion of  three of the best neurosurgeons on the East Coast.
We have a wonderful and competent medical team.
And we are at peace with our decision.
We do not want any further tests.
We do not want to torture ourselves by constantly waiting for test results.
We do not want to dictate Chad’s medical history to any more medical professionals.
We do not want to be guinea pigs in a “try this and see if it works” approach, because that’s all that is left.
We do not want to talk to our daughters from a hospital room telephone any more, fighting back tears because they are crying and repeating “we miss you, when are you coming home, did the doctor fix daddy’s head yet?”.
We want to tuck them into bed each night and kiss their sweaty little heads, read bedtime stories and snuggle. And answer their tough questions head-on.

No matter our decision, we would second guess ourselves…just as we’ve been doing for nearly three years.
There comes a time when quality wins out over quantity and this is that time.

What are you doing to preserve Chad’s memory to the girls?
We have a lot of plans and I have a list a mile long. I’m constantly checking things off that list, and it’s only been a few days.
Our girls will always know exactly who Chad is. It’s my mission.

What are your plans for the Summer?
We are going, seeing & doing.
This is the Ultimate Summer.
And the girls have no idea what is coming! They are going to think we won the lottery or something.
Their little faces are going to be frozen into smiles for a good, long time. And I am perfectly okay with that!

–

Thanks for the support. Really.
It means more than you will know.
Keep an eye out for the friends gathering, and other various things to be posted.

Have a happy, safe & memorable 4th of July weekend!

Yesterday, in Winston-Salem, we received some answers about Chad’s ongoing battle with brain cancer.
They just weren’t the answers we were hoping for.

–

We had some time to kill before meeting with Dr. T.
Boredom and curiosity got the best of me.
I inserted the most recent MRI disk into my laptop.
I had to see.

After scanning through images, I found what I was looking for.
And I had to step outside.
There was an overwhelming sense of nausea that took over me. I couldn’t shake it for hours.

–

We saw Dr. T around noon.
He is always so pleasant, even when delivering unpleasant news.

Between March & now, Chad has developed several new brain tumors.
All of the new symptoms are clues to the health of his brain tissue; and it’s not good.
The new tumor growth is aggressive.

Dr. T rattled off a list of options, all starting with surgery slated for first thing Wednesday morning.
And then he mentioned that Chad would have to go back on chemo (Temodar); low dose — with no end date. That means he would be on chemo indefinitely.

I already knew Chad’s answer.
But I pushed him for surgery anyway.
A biopsy (to check the grade of the new tumors).
A new shunt (there is a ventricular area in the back of his head that is not draining due to the new tumor growth).
A revision to his right shunt tube (into his heart instead of his lung).
And a shunt patch to fix the leaky tube within his left chest wall.

I pushed.
And hard.

But Chad declined.
Just as I knew he would.

He is foregoing all treatment.

Chad does not have a significant amount of time.
Chad, physically, looks fine. It’s the things we cannot see. And that’s hard to reconcile, even for me.

Chad wants to see as many people as he possibly can; so if you would like to see him, please email me.
He has mentioned having a gathering of friends in the very near future, and I will share details as soon as they are available.

I will also be posting items here and there about things we may need in the future: meals, lawn care, etc.
Please keep an eye out for that if you would like to help.

Also, we want to specifically ask that no one treat our children any differently or speak about Chad’s condition around them.
Children have no real concept of time and we feel it’s best to keep our routine as normal as possible for as long as possible.
Carys is so smart and will figure things out quickly if people are acting differently around our family.

Thank you all so much for your endless support, prayers and positive thoughts.
Although this development hurts to hear, we are also relieved to have the answers we’ve sought for so long.
We plan to make the best of this Summer and spend a lot of time building memories for our children.

Chad has had a problem with his right side (arm & leg) for quite a while. Neither of us feel he fully regained his strength after his tumor resection in March 2009, despite frequently passing the routine neuro evaluations for strength control.
He has tremor-like movements in his right hand daily. If he were to hold a sheet of paper in his right hand as still as he possibly could, it would still wave as if a breeze were blowing.
His right leg and foot have started to behave a little (more) erratically since the May seizure.
When we saw his neurologist at the end of May, she finally diagnosed him with Apraxia on his right side; which is a disorder of motor planning. It’s caused by damage to specific areas of the brain, characterized by loss of the ability to execute or carry out learned purposeful movements.
He has a hard time going up and down stairs, as he just cannot make his right foot move the way it should. This means he trips and sometimes falls; and he fell quite a bit last week.
Although I don’t see it in the immediate future, I think having a cane of walker will be very beneficial in time. There is nothing we can do about the Apraxia; we just have to recognize (and remember) Chad’s limits. The lack of motor control is more exaggerated when he is over-tired, for example.
Chad’s memory is still patchy. He remembers lots of things for different reason ans associations; and sometimes it baffles me what he actually does remember versus what he does not. The brain is a tricky, tricky thing!

He is having some increased difficulty remembering his medications, their purposes, his medication schedule and ordering schedule.
I try to give him as much autonomy as possible with his medications, and I check behind him frequently.
With the addition of new meds and changes in  ongoing drugs last month, he has just been a little more confused.
He has been organizing his pills in a pill box since this journey began in November 2007; but it’s getting a little complicated.
Last week, I made us each a list of his current medications, dosages and schedules for each of our wallets. I just couldn’t remember all the changes recently, and felt it best to have a list to hand to the nurses when they ask for changes in meds.

Just this morning, I made a new list for Chad to tape to his medication locker.
It lists each medication and how many pills equal the proper dose. There are two columns for AM and PM, so I hope this will help him feel more in control of counting out his medications. And I will feel better when I double-check behind him.

The ordering part is driving me crazy. I wish I could order everything on one specific day of the month. It’s just not working out that way – yet.

We venture to Winston-Salem next Tuesday (June 29) for another MRI and a discussion with Dr. T.
We still have so many questions about Chad’s current state of health and mental clarity — and I’m growing increasingly frustrated with the lack of answers (or a plan of action).

Thank you for your continued prayers, support and positive thoughts.

As luck would have it, I was away with Chad Tuesday afternoon while he had PRK performed (a laser eye surgery to try and help his right eye focus better). I missed the call, but my mom was here to talk to the PA.

“The third test is positive for a exposure to ehrlichiosis.”  And now I’ll just paraphrase:  with her current antibiotic, she should be just fine.
What the heck is licky-what?
You can read more about it at the CDC website, which is just what I did. (Click on CDC and it will take you straight to the ehrlichiosis page.)

It’s a bacterial illness that causes flu-like symptoms and can lead to more serious stuff if left untreated. Thankfully, we were on top of it and the little miss will be alright. If she shows any further symptoms this Summer, we may have to have her tested for Lyme’s again, as it can sometimes take a while to show up in the bloodstream and mimics many other common illnesses, so it’s hard to diagnose at times. I’m hoping we won’t have to worry about it. And rest assured I’ll freak out every time she catches a tiny cold this Summer.

She turns FOUR very soon and we’re planning her birthday party. She is so excited!

–

Chad handled his PRK well. He was in some pain last night, but it seems to be a bit better today. He had a follow-up exam this morning and will have to go in again on Friday to (maybe) have the contact lens removed in his right eye. The lens is there temporarily to help protect his eye and help everything stay in place as it heals.
This is the third eye procedure he’s had done in three years, so we’re hopeful that this one will help him see better and we’ll be done with laser eye surgeries.

He is chronically tired, which I don’t see improving. We’ve finally gotten the green light to try more Ritalin during the day, so we’ll try that and see if it helps any.

He has an appointment with his oncologist next week, as well as his neurologist. I see some more “trial-and-error” talks coming, which just makes me tired.

He did join us at the lake on Saturday for my cousin’s 21st birthday party. It was a long day for him, but I he stuck it out all day.

He cut his hair all off again. I’ll make him pose for a picture when he’s feeling up to it.
He looks like a fresh Army recruit, all shaved down.

–

Carys is doing great! She will complete kindergarten in a few more weeks. Her last day is June 10.
I can’t wait to see her walk across the stage for kinder graduation. So sweet!

–

And for me?
Staying busy.
Watching the miles turn over on the van from all the driving I’ve done recently.
Photoshoots are filling my free time! And I couldn’t be more excited about the things that are coming up!

Chad is doing well. He is still extremely tired, which is to be expected. He says he feels well (”normal” for him, anyway).

Yesterday afternoon, Cailyn came down with a fever. She was very tired. Her nose was running a bit — so I knew it was a cold coming on.
But. Wait.

Yesterday marked the tenth day that she was bitten by a deer tick. The tick was probably there for about 18 hours, maybe a little more, before we discovered it. I removed it with tweezers and I think I removed the whole thing. Deer ticks are so tiny that it can be hard to tell. Later that day, we found another tick on her collar bone, but it was much easier to remove.

Today…Cailyn has been complaining of flu-like symptoms. Fever. Chills. Headache.
And she has this on her back, right between her shoulder blades where the tick was embedded.

She has an appointment with her pediatrician at 11 this morning. She is feel so puny and I just hate that such a small little bug can wreak so much havoc on her little body.

I will update when I know what’s going on with her. I’m trying to stop Googling things about deer tick bites because it’s making me sick to my stomach.

Updated Saturday, 5/15 at 10:30am:
Cailyn was so lethargic at the doctor’s office yesterday that she didn’t make a sound or even close her eyes during the blood draw. They put the tourniquet on her tiny little arm and I was shocked that she didn’t freak out. I knew she felt bad, but geesh! She was such a trooper through all that.

The bloodwork results won’t be back until Tuesday.
We’re told it’s unlikely that it’s Lyme’s Disease (”rare” in our area), but it could be Rocky Mountain Spotted Fever. Or, Cailyn could have just had a localized reaction the bite and the reaction is just very similar to the more serious RMSF.

In any event, Cailyn also has a raging double ear infection — and hadn’t complained about her ears at all.
Her fever was extremely hard to manage yesterday, but finally broke after I made her soak in the tub all afternoon.
It’s hovering around 99 degrees today – I’ll take it!

She is on a heavy dose of antibiotics that are playing double-duty for the ear infections and tick bite reaction/infection.
I’m supposed to take her back in on Monday so they can have another look.

Thanks for keeping my little diva in your thoughts & prayers! She is, mostly, back to her diva ways as of this morning.