Our Belated Thanksgiving

Since I have a very irregular schedule, we weren't able to do Thanksgiving until yesterday.  Even though we were late, it was still just as good as if it were on the actual day.  I don't think the day matters as long as we are all there to do the same thing.  Give thanks. 

Every year I have written up a little something for the family and I read about what I'm thankful for.  This just wasn't happening this year.  The moment I sat at the table, the emotion was overwhelming and the tears were unstoppable.  Alyssa our second to oldest couldn't even come to the table until almost halfway through dinner.  She was very emotional.  I couldn't read two words let alone an entire paragraph on each of my daughters and my wife.  I tried telling the girls why I couldn't read this year and I couldn't even get that out.  If you can't imagine, I can try and explain to you why this was so hard.  It's obviously been a very tough year for everyone.  Especially Macey.  Seeing her sit there in her chair, with her little hat on, eating with her left hand because her right one doesn't want to cooperate very often was already just too much.  But besides the physical obstacles she is working so hard to overcome, the fact that she was sitting there was the biggest blessing any of us could ever ask for.  We are all thankful that Macey has endured so far and this thing hasn't done the unthinkable.  We won't even discuss it in our house because we know in our hearts that not only is Macey going to be ok, but she will be the same old Macey she was before this all happened.  Her mind, spirit, beauty and sweet personality are all still there, but the fact that she doesnt' feel quite herself, makes us all wish she would get better sooner.  We made it through our teary-eyed dinner and we were all so very thankful that our family was sitting there together, enjoying each others company.  

Macey is still working hard to get her walking back in order.  She is still struggling with it all and she gets frustrated because of it.  Imagine wanting your leg to step forward and it just won't.  She still doesn't have the ability to make her leg do what she wants it to yet.  But we are working her that direction.  Also, her last shower as Angie was getting her dressed we noticed on her head that she is getting fuzzy little baby hair sprouting out of her scalp.  This makes her very happy as you can only imagine her wanting her hair back. 

We continue to work hard as a family helping our daughter recover.  Macey goes to the Huntsman center tomorrow for an appointment and to get her next higher dose of chemo prescribed for her next 5 day round coming up in a about a week.  She does tolerate it ok but she definitely doesn't feel that great taking this stuff.  It messes with so many things.  It makes her sensitive to sound, taste, smell, and makes her gums sore etc.  She really dreads taking it but knows that a little discomfort now is worth the tumor being obliterated.  So we press on.  I'm hoping my wife and girls can come down and visit me where I'm working this weekend.  I hate being away even for a minute. 

Remember too, Macey is still having a hard time.  This is not over so please continue to read the blog, show her love and support, call her, write her, email her whatever you can.  It means a lot to her and to our family.  Thanks again for reading and have a wonderful week!

Ups & Downs

We speak so much of our beautiful, strong daughter but what goes on behind the scenes is sometimes missed.  In fact, because we adore our children so much, the supposition of anything bad happening or things not turning out as planned are the nightmares that haunt our every waking moment.  Not that we focus on those moments or give them any validity whatsoever, but the fact that those thoughts exist, creates a tension that compromises our ability to stay positive sometimes.  It's like an emotional war of good against evil going on inside our heads.  As I've talked about in older posts, we learn to focus and concentrate on the positive things.  We have to.  As parents, dwelling on the negative would be nothing short of maddening.  Life is a complex series of events that creates a unique chain, like everyone has there own life DNA.  Each one being completely unique, full of memories both good and bad from start to finish.  We take our individual stories and we filter what we want to keep and purge what we don't.  We will have a lot of purging to do as we work towards Macey getting better.  But there is a lot of good that will be experienced for an eternity.  The entire string of events from the day Macey was diagnosed has taken a toll on our family but has also strengthened us and brought us all even closer.  We have seen friends step up and do some amazing things.  We have seen family put their lives on hold to help us.  We have seen people come out of the woodwork, people we don't even know show their love and support.  Life is really about living and loving isn't it?  No matter how we do it, just the fact that we all get a chance to is the most precious thing this universe has to offer.  As we continue to keep our minds looking at Macey's recovery, we will hold on to all of the love, support, memories and special moments that make our lives meaningful.  We still don't know why this happened to us or why our sweet daughter has to endure such a horrible thing.  I would never wish such a thing on anyone ever.  I watch my wife struggle with emotion and I watch each and everyone of my daughters have good days and bad days.  But how can I or anyone possibly complain?  I think about what Macey is going through and it wakes me up.  I don't have time to complain or pout.  I have to be strong for my daughter who is the one going through this. 

We all hope and pray each day for small miracles and signs of improvement.  Macey has done so well but we still are working on her weakness and ability to walk.  It's been so frustrating for her, but she has made some great improvements. 

These are the thoughts that go through my mind each day.  I don't care who you are, you are going to have weak moments and down days.  It's to be expected.  We have them but we try and avoid them.  We continue to fight this thing and we won't stop until it's completely gone and Macey is well. 

Thanks for listening to me.  I normally blog about Macey but felt it fair to let you all know how it effects our family.  We'll continue to update you as she progresses through physical therapy. 

Happy Holidays to Everyone..

Just wanted to show off my daughter

I know that not everyone following this blog has a Facebook account or is "friended" by Macey on Facebook, but I was just perusing her pages of photos and came across a couple photos that I thought were worthy for the blog.  Let me rephrase that, all of her pictures are worthy but these ones stood out in particular. 

Probably the hardest part about this disease is watching someone you love so much go through so many physical changes associated with radiation and chemo.  Even so, Macey has retained her glowing beauty and doesn't realize sometimes just how perfect she is in any state.  We love her so much and I can't express to you how hard it is to tell a 20 year old female, that no matter what she is beautiful and expect her to believe you when she has gone through so much.  When you are in Macey's shoes, the idea that you have lost most of your hair, are dealing with weakness that effects your ability to walk and slight speech issues caused by the neurological effects of the tumor and probably the radiation, is more difficult to deal with than I'm sure any of us could imagine.  Young ladies have that natural, inherent vanity thing that really takes hold when you are so used to being at the top of your game.  I'm speaking for Macey here but hey, I thinks she is stunningly beautiful and I know it's been difficult for her to deal with the after effects of the radiation.  But just as a reminder, I wanted to post a couple pics of Macey just to remind everyone how ridiculously beautiful she is. 

Also, thank you Brock for putting her Miracle Moo sticker on the back of your motorcycle helmet.  That seriously kicks butt!  

Our Beautiful Macey Moo

Macey and her friend Alex

(Macey on the right)

Brock's Helmet proudly displaying the

Miracle Moo sticker

   

Physical Therapy Starts..

Well our Miracle Moo has to start on her road to physical wellness.  As she continues her chemo, the doctors feel it is absolutely necessary for Macey to become involved in physical therapy.  She needs to re-gain some of her strength and they need to really start working her right side.  She is in desperate need of an ankle brace for her right foot too.  Her ankle has been rolling under a little when she walks.  Since she can't really feel her foot, she can't tell that her ankle is rolling.  She can feel the pain shooting up her leg though and knows it could possibly be doing some damage if it doesn't get remedied.  So they are going to do an evaluation and set her up with an aggressive physical program that will hopefully improve her right side weakness.  We are just going in with the attitude that it WILL improve her and Macey, like everything else so far, will surprise everyone with her ability to quickly progress and heal. 

The new higher dose of Chemo that Macey takes for 5 days a month makes her a little weak and a little nauseated.  Even though she only takes the pills for 5 days each month, the chemo courses through her system for weeks after.  I hope she gets more tolerant to the higher doses because I don't want to see her so tired and run down.  It's not terrible at this point but I think she would definitely like to feel a little better than she does now.  But, if this is the payoff for recovery, I guess we all deal with it.  I'll take tired and nauseated if it means Macey gets better.  I know that's easier for me to say, since she is the one who has to deal with it.  But whatever the case may be, we will be by her side, supporting her and giving her strength every step of the way! 

How we survive

Any time you are faced with uncertainty, or life presents one or several of its many challenges, taking control of how they affect your life is key in emotional well-being and survival.  Controlling your own mind, using the power of positive thinking, and projecting the desired outcome before it happens, must be at the forefront of your mental paradigm.

You learn quickly, and I would assume it's chalked up to the instinctual human ability to survive and thrive, to find ways to adapt, adjust, and process in alternate ways when you have life changing events.  It's so critical when you need to focus and as a Father who is looked up to for day to day support and encouragement I find myself re-training my thoughts and processes to eliminate the negative things that can consume and control me.  So the other day while sitting idle, the words in the paragraph above just hit me.  I use them to keep me strong, to help my family and particularly my daughter Macey.  When you can create a phrase of exacting words or a mantra if you will, it's easier to reflect back on those words in times of weakness, negativity and sadness.  I feel like such a psychological neophyte sometimes, wishing I could grasp the true, untapped power of the human mind.  It would probably be much easier to deal with tragedy, struggle, and life's unfair challenges.  But, until we discover those resources, we find other ways to cope.

That's a lot to swallow, but it's how I deal with the trials Macey and my entire family have gone through.  We all have our own personal way of playing the hand we are dealt in life.  This is mine.     

So, this being said, I leave you with a message to my daughter that simply says, "Stay strong sweetheart, your Daddy loves you and will always be by your side".

Almost forgot to mention..

Our daughter Alyssa works at Autoliv and one of her good friends there was able to arrange a Jazzy for Macey to use for the next 3 months.  If you don't know what a Jazzy is, it's a powered scooter that she can cruise around on.  It's pretty cool and she has a lot of fun on it.  That way too, if we decide to go out or take her somewhere, she can zoom around with us.  Thank you Monica and I apologize for not knowing the name of the other person that helped you put this together.  I will find out and post so they get an honorable mention for being so generous.  Macey thanks you and loves you!

Break Over - New Chemo plan started

Macey got through her one month break and it was much needed.  She was so glad to be able to relax and not have to go to the hospital 5 days a week every week.  But, as stated in previous posts and prescribed by her doctors, Macey began her 5 days of chemo this week.  She will take a dose equal to almost double of what she was taking during her radiation.  Macey handles the chemo very well and they want to continue to be agressive to further combat the tumor.  She only needs to take one pill a night for 5 nights and she's done again until next month where she will repeat the 5 days again.  She will continue to do this plan for the next year and a half, maybe two.  It's only one week a month and we think Macey will handle it just fine.  If anything it makes her feel a little tired, but no nausea, or other adverse side effects to speak of. 

In talking to the her doctors at Huntsman, they want Macey to begin Physical and Occupational therapy right away.  They want her to take ownership in her healing process and actively become engaged in getting herself back to 100%.  They believe because of her age, health, strength and attitude, she should be able to regain all of her physical abilites.  That's good news to her because she's really anxious to being able to get around on her own again.  Thanks to a good family friend Teisha Kirk and her Mother, Macey received a BMX style walker complete with hand brakes and a seat.  It's great because she can stand herself up with it and walk around the house etc..  It looks like a walker from the X-games.  So she has enjoyed the independence.  Hopefully soon, we can rid of the walker and she will be up and around without any assistance.

Macey continues to be our saint and we love her so much and continue to encourage her.  I know I've said this before, but we as a family refuse to accept anything less than Macey getting well.  She's already shown incredible improvement. 

Hoodies, should be done.  I'll call today and check and we'll get them out to you as soon as they are in hand.  Thanks for being patient and sorry it's taken so long.  We might need to find a different supplier who's a little quicker on the turn around..

We call her Miracle Moo for a reason....

Not only is Macey's nickname Moo Moo or usually just Moo, but also a name that is becoming legendary.  Since we found out about Macey's tumor,  from day one decided to call her our miracle saying that we would accept nothing but complete and full recovery.  Macey's attitude, our families attitude and everyone around her instilled in her that she is strong and this thing cannot beat her.  We have fed her an incredibly healthy diet, kept her positive and along with good doctors and a good healthy regimen, Macey has already proven that she is stronger than this disease.  She looks healthy, she laughs, and she has been determined.  All of this has worked miracles and here's proof..

Macey had her MRI done on Monday.  They did the scan with the contrast dye.  This scan was mainly to establish a baseline so down the road we can see the effects of the radiation and chemo on the tumor.  After her MRI appointment we met with her Neurosurgeon Dr. Welling.  He pulled up the scans in his office and we all sat in front of his monitor scared to death of what we might see.  Was it going to be the same?  Was the tumor going to be worse?  What were we about to see?  Ironically, seeing is what we were having a hard time doing.  As he scrolled through the layers of her brain we couldn't see any dark mass or outline like her original scan back in August.  I thought we were looking at something else and not her scans.  But, yes they were her scans.  The tumor has responded amazingly well to the treatments and all of the wonderful support and love from everyone around her has paid off.  There is no definite outline of a tumor.  What was once a defined mass is now an undefined haze.  Macey is our MIRACLE!  This was the best news we have gotten since we intially found out.  Dr. Welling said, "Whatever it is your are doing, keep doing it because it's working".  So even though we know there is more work to do and she has to do her 5 days a month of chemo for the next year, Macey's strength and will has kicked this tumors a**!!  Pardon my French.  We are so proud of her that the emotions of it all, the good news, was like someone lifting a Bradley Tank off our backs.  We are so excited for her and we will continue to do what we have been doing and making sure our daughter gets better. 

Macey had an appointment today with the Huntsman Cancer Institute in SLC and they wanted to review the slides and talk to her about the upcoming chemo plan.  Her Oncologist said the same thing.  He said they don't normally see these kind of results until several months after treatment.  Well, Macey isn't "normally" and she has proven how tough she is by the MRI results.  Her doctors were very very pleased with the results.  This MRI wasn't supposed to show huge change, but it did.  Macey has an angel and this angel has protected her and helped her.  We couldn't be happier.

We love you Macey.  Keep healing our sweet, caring and loving daughter.  We are winning and we will continue to do so...