Hope4Peyton

I’m having a tough time keeping up with life these days. I will try to start posting more frequently, so you guys don’t have to wade through my own personal versions of War and Peace.

Among other things, one extremely important duty I have while all this is going on is to make sure my wife has a family to come home to. Rachael had a little mini-implosion the other day. It started with a simple argument with her sister and ballooned up into the actual root of the problem. She had been nasty to her sister all day, so I sent her to bed early and told her she had 5 minutes to figure out a good reason why it was ok for her to be mean to her sister.

I waited for 4 minutes, figuring I’d have to wait for her to quit crying to get her to calm down.

I walked in, she was sitting on the bed, crying, and a little panicky. She argued with me that she hadn’t had enough time to come up with a reason.

I gave her that extra minute.

I sat in silence. She sobbed and watched the clock.

When it was time, her teary, runny-nosed response was, “Dad, I’m sorry. I just want this to be over and to have mom home. I’m done.”

She waited unsure as to how I’d react.

I told her that that was the best response to that question ever and gave her a big hug.

We both sat there and sobbed a little. I held her and rocked back and forth. I told her that we all wanted that more than anything, and we’ll get that soon. I PROMISED her we’d get that soon. But, in the meantime she couldn’t take things out on her sister or her brother or her grandma.

I told her that when she was feeling like that, it’s ok to talk about it instead of just being angry and treating the people she loves badly.

I wanted her to come up with the answer. Yes, I know she’s 8, but she’s a very smart 8. If I let her answer with her standard, “I don’t know” we would’ve had a repeat performance. I told her that it’s healthy to talk and to cry and to get things off her chest.

I asked her the following:

“Who’s the strongest woman you know?” Mom.

“Who’s getting better every day?” Mom.

“Who has His hands around us and is protecting our family daily?” God.

“Who is going to keep our family together?” God.

She didn’t pause on any of those answers. This is Anissa’s amazing little “mini-me” and she’s raised her right.

Earlier in the evening, I told Anissa that Rachael was having problems. I had asked her if I should deal with it hard or soft. Anissa told me to go soft because she’s been through so much.

I now know I’m going to get my family back. I’m positive of that. It’s like I can see it through the Macy’s store window. It’s got a big price tag that I can’t quite afford yet, but it’s something I can work toward. It won’t be the same as it was, but, that’s kinda what life changing events do.

For the past few weeks, Anissa’s been working on the assumption of a 5 step program: Wake up. Get out of hospital. Get out of nursing home. Get out of rehab facility. Get home.

So, let me tell you guys about step 4.

Actually, before I do that, let me back up a bit first and make a somewhat controversial statement.

You all know we’ve been down the pediatric cancer road already. Well, going through pediatric cancer at All Children’s and now CHOA, is like going through hell in a Cadillac. It’s no fun, but they do their best to help you along the way and to make you as comfortable as they can, from the top down, at every level of the respective organizations and in as many aspects as possible. It’s filled with people who aren’t just doing a job, instead they have careers, and, most importantly, they care.

Another thing about pediatric cancer is that the kids know they are sick, but they have no pre-conceived notions as to the possible outcomes. If you tell an adult they have cancer, they understand that it’s a grim situation. If you tell a kid they have cancer, they still want to be a kid.

As soon as I walked in to tour what would become Anissa’s new rehab facility, I was at peace. In truth, I didn’t need to see all of the facility, I just needed to feel the energy that exudes from this place and their staff. I toured it anyway. It’s flippin awesome. It’s a team that will let me take my hands off the wheel (and maybe get some sleep) for a little bit, because they absolutely care.

It gives hope. It’s Disney for recovery.

And her therapy team, we’ll call them, Ariel (ST), Belle (OT), and, Jasmine (PT), is EXACTLY who she needs right now.

Why?

Because Anissa is starting to progress at an impressive speed.

She’s now officially on normal liquids and ground foods. She’s starting to get around pretty decently in a wheel chair. She’s learning new ways to do normal things. She’s stood. She actually walked the other day. It was with a lot of help, and she had to throw her right leg in front of her, but she still walked. They are working her extremely hard, and she’s responding, very well.

Remember when I said there were holes in her memory you could drive an Oldsmobile through? She’s quickly connecting the dots and filling those holes. We’re down to holes you could ride a bike through, and that is shrinking.  I’m starting to ask her parenting questions. We’re joking about things and goofing off. We’re wading through pictures and she’s telling us about them.

She does get tired, and when that happens, she’s not as sharp. But that’s to be expected.

There hasn’t been a whole lot of purposeful movement on her right side yet, and I’m starting to get worried about that. Physically/mechanically there’s nothing wrong. We’ve just got to figure out how to get her mind to tell her leg and arm to move again. You can feel her trying at times, and at other times, not so much.

By my count, there have been several God granted miracles on this journey: The fact that she lived, the fact that she’s cognitive enough to be a mom again, and soon, the fact that so many have come together around the world to help my family in this. Is it wrong to ask for one more? Is it wrong to ask that her right leg and arm start to gain some purposeful movement? God being infinite, I don’t think it is. I’ll take her cognition level over movement any day of the week, but I keep going back to the “Things will work out” response that I got when I prayed about this way back when. I have faith that, in the coming days, something big will happen and she’ll start moving that right side again.

Today is my son’s 12th birthday. We’re going to spend it together up in the rehab facility. I’ve reserved a room for us to celebrate, and the gifts have been wrapped. On February 1 it’s Anissa’s birthday. I’ve already got something big planned for that, and it heavily involves Ariel, Belle, and Jasmine.  We’re in the “sweet spot” of our year, family celebration-wise:  Nathaniel, mom, me, anniversary.  If that special gift were coming, now is definitely the time.

I’m praying for it and giving thanks for how far we’ve come daily.

My part of this one will be short.  A friend popped in and thankfully…ever so thankfully….she sent a write up….allowing you all to see through her eyes (and make it so I can keep you guys updated!).

There has been an army of friends and family that have paraded through and visited Anissa over the past 2 months.  They all comment about how awesome the progress is.  I see it too, but I’m a little envious of each of them.

They get to go back to their respective homes…and spend time with their normal routine and family.

Me?

I am constant.

I used a line the other night that I rather like.  I tend to get the end of day table scraps of what others got to see that day.  As with all scraps, there’s bad mixed in with the good, so occasionally a drive home from her isn’t always the happiest of times.

To steal a line from Queen:  “Friends will be friends, when you’re in need of love they give you care and attention.”

Last week, some new friends put together an inspiring little video I have to share.

Absolutely awesome isn’t it?

For several reasons, which you’ll see shortly, I didn’t see the email when it came through.  Instead I saw it when I needed to.  When I was at a low point after one of those bad drives home.

So, I *think*, I’ve got enough coverage through mid April.  I have to finalize some things with a few folks, but I have to tell you how absolutely awesome it is to have support.  Not a single day goes by that I’m not amazed by someone’s actions.

Last week, Sandi made a return visit for a few days and REALLY brought out Anissa’s personality.  The therapy group in the nursing home was more used to working with a different age of patient.  So, they tend to talk over/around their patients.  It’s not a negative, some of their patients are more responsive than others.  So, Anissa was standing in the box (a contraption that helps her work on trunk control), and they were talking around her about food.

Anissa leaned over so that she was in the face of one therapist and said, “Whatever”.

The therapist looked a little shocked and said, “what?”.

Anissa replied with, “This morning I had ‘almost’ meat for the first time in 50 days.  You need to change the topic”.

The next day they stood her up in the box.  They asked her to stand up for 5 minutes.  She said she could do 5 minutes if coffee were involved.  They reminded her that she’s not able to have liquids just yet.  She told them that she couldn’t do 5 minutes then.  They agreed to a thickened cup of coffee.  Anissa started pointing to other people around the room, “you’re a witness, you’re a witness, you’re a silent witness, etc” based on whether or not they could talk.

She did 10 minutes of standing then.

Time has obviously passed, and I’m a tad overwhelmed by a handful of life events, not the least of which is my wife.  I’m having a tough time keeping up with her.

Why?

Because we’ve moved.  We made it.  After many sleepless nights, filled with worry and concern, we’re at rehab.

Today we got a wheelchair.

I’m betting $1 that she walks by her birthday, at least one step.

Now without any further ado, I’ll give way to Dawn.

Vader sent in the 501st to fight cancer.

On Sunday, the Rebellion helped a stroke victim with a personalized greeting from Jedi Master Yoda himself!

I am SO geeking out on this one.  She did too.  I brought home her ipod Sunday night so I could load it up with the first round of everyone’s greetings.

And wouldn’t you know…

Monday…

After hearing Yoda speak to her directly (including her name!)…

She felt temperature differences AND random pokes on her right side.

Coincidence?

Well, yeah, probably.  It IS just a character in a movie and tv show after all.

It’s still cool to get my geek on once in a while and enjoy things.

So the past few days have been relatively rough, and we think we’ve figured out why.

We think she may be ready for the next step in this juncture…MAY…POTENTIALLY…but understand….that’s the last stop before home!

Got a TON of questions to get answered first, but from what I’m seeing, the non-compliant times I mentioned before are either boredom, she’s frustrated at the pace, or they don’t offer that at this facility.

Until we leave this place, we need to focus on her endurance.

Which means, we need her to do her therapies.

Which means, we need to keep her occupied so the nursing staff doesn’t feel the need to “medicate her” into oblivion.  Yes, I’ve spoken with them on that topic.

Which means, I need good people, whom I know and trust to volunteer to visit and continue to work on her cognitive therapies with her.

I’m really soul-searching on this one, but even on day one, I knew it would come down to this.

This is why, when everyone wanted to come and visit when they first heard what had happened to my wife, I asked them not to.

Because I didn’t need you then, and I said that your time to help would come.

I’m thinking this is that time to start lining up volunteers.

Until we get her to the new facility, we’ll need a little coverage.

After she’s done at the new facility, depending on what level she at when she leaves, we’ll need a fair amount of coverage at home for the first couple of weeks.

I have 2 definites.  Beyond that, it gets fuzzy as to who’s available to help.

I’ve set up a site at www.lotsahelpinghands.com and will be sending invites to folks I know.  Even if you can help for an hour here or there, it’s beneficial.  That would give others a break.  If you are out of town, we’ve got spare beds here.  So, can you help?  Would you offer up your spare time?  Or maybe a week’s worth of vacation?  I know it’s a tall order I’m requesting, but I’ve got to ask.

If you haven’t gotten an invite just yet, I apologize.  I’ve had a lot on my mind.  Either email me or request one by leaving a comment.

Oh wow, almost forgot the update on Anissa!

Let’s see, I’ve had her standing, which came along with an enthusiastic, “Ta-daa!” from the Mrs.  I’ve been feeding her applesauce and pudding.  She got a pulverized breakfast Tuesday morning and said it was delicious.  We’re trying to strengthen the swallowing muscles before anything other than pulverized.  Still, it’s the first “real” food she’s gotten since November 17.  I reminded her that there are easier ways to go on a diet.

We’ve been working on her fine motor skills on the left side, and the feeling is coming back in her right!  I came in from outside and put my cold hands on her right leg.  She responded with a “brrr cold”.  I asked if she could feel that, and she said yes.  Last week, I put ice cubes randomly around her leg while she wasn’t looking, thinking I’d get some sort of reaction.  I didn’t.

Monday, she did react though.  Whoo-hoo!

Of course she didn’t want to do the ice-cube test again.

There are times she’s extremely aware of her surroundings.  There are times she gets too tired to speak.  There are times she repeats things randomly.

Like I said before, it’s a roller coaster.

Then came Tuesday.

Why was Tuesday so awesome?

Because it was pure Anissa all day.

She had been falling asleep during her therapies at times because they were wearing her out.  Today, she went a full 90 minutes.  Then out of shear stubbornness, she decided to stay awake and have detailed conversation the rest of the day.  Pretty much all day.  We worked on a few things in her room.  She went through some of the mail and got a handful of surprises.  Many thanks to everyone who sent stuff!  The variety of what came in was absolutely perfect.

It also included a very special, very personalized package from a Mr. R. Macchio.

Ralph, many thanks for that.  She lit up like a light when we opened it.

She also actually posted to facebook.

She’s missing everyone badly.

Our life has become an emotional roller coaster.

The lows are so low.

The highs are oh so high.

There are bad days like Saturday and Sunday where Anissa has difficulty controlling her emotions and making sense of things.  Her speech seemed to take a downward turn.  Her comprehension wasn’t all that great either.  We think she’s “replaying” parts of her life at times.  We were watching a little TV and she was talking like we were in the movie.

Naturally it was Shrek.

Why couldn’t she have gotten me confused with Bruce Willis instead of a large green ogre?

On those bad days, there are still sprinklings of good though.  I did get to sit her up in bed and work on “trunk control”.  I only do this if there is at least one other adult in the room with me.  I also took her down to the therapy room and helped her to stand up.  We were up for a grand total of a minute or two.  We stood there together for the first time in month and a half while a therapist made sure her right leg didn’t buckle on her.  It was brief, but great.  At one point, I got her so frustrated that she moved her right arm.  I didn’t mean to, she was sitting there seething and I was thrilled that I felt the movement.  It just ticked her off more and she asked me to leave.

The nursing staff has been complaining about her lately because she keeps trying to get out of the bed or chair.  At night, they’ve prescribed her something to help her rest comfortably.  It hasn’t helped.  She’s a little too strong willed for her own good these days, which is dangerous when you’re in a hospital bed for a reason.

Then, there are amazingly good days like Monday.

I think having all three kids up there with us is a little too much for her to deal with consistently, so I tried changing things up a little.  I took her little mini-me, Rachael, up.

Rachael was in need of some one-on-one time with dad, and she wanted to help too.

We got to the rehab center and Anissa was fairly active.  She wanted to go for a walk.  So, her sister Angela took her for a stroll through the complex.  Along the way, Anissa saw an ice machine and asked if she could have some ice chips because she was so thirsty.  The big concern there is that they haven’t done the test yet to figure out if she’s silently aspirating.  We talked her out of that, but it did give us an idea.  We wanted to test to see if she could feel the differences in temperature.  We got some ice, and 2 sponges on a stick, dipped one in the ice and proceeded to test her ability to feel the temp differences.  She was surprisingly accurate.

At room temperature, ice has a tendency to melt.  After a little while, she asked if she could have some water on the sponge.  It may sound cruel, but I didn’t want to cause her harm, so I would drain the water out and she’d get a damp sponge in her mouth.  We repeated this for a while.  Then, she asked for something with a little more consistency like applesauce.

Think about that for a moment.  She was aware enough to understand why she couldn’t have water, then she put one and one together enough about trying something thicker.

I gave in some and loaded up the sponge with water.  She swallowed it down fine, then looked at me exasperated as if to say, “See.”  I asked her to cough.  She did.  Then take a deep breath.

She did.

She asked about getting a dvd player so she could watch some tv.  I told her I left it in the back of the other car.

She told me I was fired.

A little later on, Rachael and I wheeled her outside to sit in the sunshine.  She loved that.  Absolutely loved it.  She just silently sat there and grinned.  Rachael started combing Anissa’s hair.  It must’ve been very soothing because Anissa zonked right out, peacefully.

Monday was definitely a good day.

She held her head up high the whole time.  Her trunk control was the best I’ve seen so far.

On Tuesday, I took Nathaniel up for what I thought would be a morning visit.

When Nathaniel and I got to the rehab center, Ali was already there and sitting in the main gathering area with Anissa.  They were on the other side of the room, a sea of wheel chairs separated us during a Kwanza celebration.  There were some local school kids who came out and very graciously played various instruments and read some pieces.  Nathaniel and I made our way through the crowd and got to Anissa.  She was thrilled to see us.  One of the things that she’s in need of working on is volume control on her voice.  She needed that before all this happened actually.  When we got there, Anissa looked up at us and said, “you’ve got to get me out of here.  They’re trying to kill me.”  She nodded her head at the kids doing the musical performance.  Then one little boy pulled out a violin.  Anissa looked back up at me and said, “See!”

I leaned in and told her the boy was the same age as Nathaniel and she needed to show some respect.

She went back to watching, but every wrong note caused her to look back up at me and raise her eye brow.  There was nothing that could be done.  We were in wheelchair grid lock and weren’t going anywhere anytime soon.  We were all chuckling.

When the show ended and we went back in to her room.  For roughly 2 hours, it was Anissa, exactly as she should be.  She was witty, sarcastic, hilarious and downright fun.  We talked about current events, some movies and the kids.

We wound up leaving as the beautician was ready to take her in.  She needed it.

Nathaniel and I left on cloud 9.

We got home with about 5 minutes to spare before a work meeting.  As I was dialing in to a bridge call, one of the nurses called.  Let’s just say they were having a difficult time getting Anissa calmed down and wanted to know about giving her medication to basically knock her out, which means she would miss a therapy session.

I told them I’d be right there and Nathaniel and I started off on another trip back up.  I took the work call from the road with only minor technical difficulties.

Good times.

When we got there, Anissa was “non-compliant” with just about everything.

I walked in and just started talking to her and got her cleaned up a little.

After a while, she said, “I don’t know what happened.  Last thing I remember, I was in the beauty spa and you guys left.”

She lost it then.  She was distraught that she had just forgotten the past 2 hours.  She balled hard.

I held her close and Nathaniel came in and we did a mini-Mayhew family hug.  Anissa kept crying hard.

We both tried calming her down with minimal results.

Then, something amazing happened.

Nathaniel started singing softly.

“Don’t worry…about a thing”.

“‘Cause every little thing’s gonna be alright”

Anissa joined in, slowly at first.  She’d finish a line.  Then eventually she was singing right along with us.

The tears stopped and were wiped away by my little 11 year old son who impresses me more and more every day.  He’s going to out grow my shoes very soon.

After that, Anissa was relaxed, talkative, more positive.

I think I’ve been a little lucky with Anissa’s responses and the timings of the visits from the kids.  I may need to rethink that.  She needs her to get a little more consistent with her moods for their sakes.  I’m going to give her a break from the kids for a day or two and see how that goes before taking Peyton up 1-on-1.

So here’s where you, the reader, come in.

This is me asking for help.

Your prayers, love, comments and thoughts have carried us this far.  You’ve picked me up when I was down.

We’ve done some brainstorming here and have come up with a laundry list of things you guys can do to help:

1.  Please keep praying.  It’s working miracles.

2.  Record your encouraging thoughts and/or comments and email them to helpforanissa@gmail.com.  Please try to keep it somewhat short, say or show your name to help her with the recognition.  I’ll collect them and play them for her.  I think the variety will help.

3.  Send cards/photos/things to stick to the wall to our PO Box.  Things with texture are best I think.  Make sure to attach your name in there to again help with recognition.  She’s able to read, but her vision is still a little wonky.  We’ll be recycling the ones that are on her wall now so she gets some variety.  The address is:

Peter Mayhew

860 Johnson Ferry Road 140-184

Atlanta, GA 30342

4.  I’m not a twitter person, but my wife is.  If someone could gather up a collection of what’s been said about her on twitter (the encouraging stuff), I’ll see if I can print them off with really big font and build a book.  Amy Driehorst

5.  A few folks have commented on getting a full spectrum light therapy lamp.  Chrissi

6.  Our pal, The Jennster, is organizing an online healing for Anissa.  12/30/09 at 7:00 pm EST.  Pray, focus, think of my wife at that time.  If you’ll recall, we did one on Thanksgiving night and a day or so later, she was out of the coma.  This time we’re focusing on her right side.

7.  Send over funny simple dvds.  Glee, Modern Family, Scrubs, Karate Kid, Robot Chicken,

8.  Need a digital picture frame – I have plenty of usb sticks from trade shows over the years and can cycle through those. – Andrea’s Sweet Life, Beth, Cindy

9.  A stress ball or two. – Lauren, Nihilady

10.  As odd as it may seem, if you can’t help us out, help someone.  Perform a random act of kindness to a complete stranger.

11.  Late addition – Her favorite Star Wars character is Yoda.  If someone (maybe a clone wars fan) could gather some “Yoda-isms” I’ll print those off as well.

P.S.  If you are planning on buying something and sending it in, please post what you’re getting in the comments of this post.  I really don’t need 50 digital picture frames.  Just one or two.

Just thought I’d share a shot of the Mayhew Family Christmas 2009:

We got up to the rehab center a little late, but Anissa was in pretty good spirits.  The kids took some of their Christmas gifts up there to play with.  Nathaniel had some Legos, and the girls took their Littlest Pet Shop toys up with us.

We opened up the remaining gifts in that little room together.

We talked a little, and watched the kids open up some gifts.  We joked some.

One of our all time favorite lines is from the tv show Scrubs.  I asked Anissa, “why are there pancakes in the silverware drawer?”

She responded appropriately, “Why is there silverware in the pancake drawer?”

She had pretty darn good comedic timing too.

I didn’t press her on things.  There will be time for that later.  There were times when she’d look at me and start to tear up.  I didn’t let the kids see that.  I’d hug her close, whisper in her ear that the kids were still there and would change the subject as quickly as possible.

The kids didn’t pick up on any of that adult stuff.

They just know we got to spend Christmas together as a family.