The Meaning of Christmas...

First and foremost we want to thank Laurie and Deloy Wadsworth for an incredibly kind and heartfelt gesture. Laurie read Macey's blog and felt compelled to summarize our misfortunes, regarding our beautiful daughter and the hardships it has created in an eloquent letter written by her. We are thankful beyond words that such generous, altruistic people still exist and want to personally thank Laurie and her family. The effects of her letter which she distributed to friends and neighbors have brought new meaning to the words generosity, thoughtfulness, and has transcended the gift of giving. My family and I are speechless and humbled by your kind acts and even though we don't know who some of you are, please know that your generosity will remain in our hearts and thoughts forever. You should all receive and deserve the profoundest of blessings for your kindness.

 And to those whose help comes in the form of prayer, we are equally thankful that you have included our daughter in them. I believe with the strongest of convictions, that prayer for Macey by the many friends and family that we are so lucky to have, create a tremendous wave of spiritual and positive energy, that has healing power beyond comprehension. We believe and we have seen its effects. Because of you, our friends, our daughter receives the strength to fight each day and refuses to let this disease beat her.

 Again, thank you Laurie, Deloy and family, and to all of you out there that have showed such remarkable kindness. My family and I will never forget this Christmas and the love and selflessness you have demonstrated.

 Merry Christmas to all of you!

 With much love,
 Ken, Angela, Erica, Alyssa, Macey, Maranda, and Kylah
 The Steckelberg's

Updated Donation Information

Sorry everyone, didn't realize that her Chipin Donation link had expired.  So here is a new one if you are still wanting to donate.  Macey is doing OK considering how severe these new tumors and treatments have impacted her.  She is so weak but has all the energy and attitude to keep her strong.  We will continue fighting for Macey and anything you do helps in so many ways.  Thank you all for everything and for keeping Macey in your Prayers.  With much love from our entire family.

Admitted to the hospital

Just and update.  Macey was admitted today 10/25/2012 to the Huntsman Cancer institute for some evaluation and what they are calling a tune up.  Her symptoms from the radiation worsened and she has had a hard time with many things include standing, walking, seeing double, not being able to hold her head up straight, talking and swallowing.  This area where the tumor is controls so many of those functions and it has really messed her up.  She was also dehydrated so they wanted to watch her for a couple of days, and keep her on some IV drugs and fluids to hopefully help with the Edema and her strength.  We'll keep you posted.  Please keep Macey in your prayers and we are so very thankful to those of you that have donated.  Please, if you read this, don't be shy, no matter the amount, Macey needs everyones help.  Thank you all! 

Almost too difficult to say....

Just as things have gone in the beginning, hoping for good news about what kind of tumor, whether it was treatable, or cancer, or removable etc..  as each answer unfolded none of the questions had good answers.  We were wanting so bad for something good to be said but it just never happened.  We were fortunate enough though to have a very tough daughter and a very strong, positive support group between her immediate family and friends.  She responded so well to the treatments and everything was looking so very positive.  Her walking has been a challenge but as I've said, I'll take the physical issues as long as she is healthy. 

As my last post stated there have been some changes lately that concerned us.  They have seemed to worsen so we called her oncologist this morning at the Huntsman Cancer Institute.  They scheduled an MRI today instead of waiting until the 18th.  We got the disc after the MRI and drove straight to SLC to meet with her doctors.  They reviewed her scans then met with us.  I wish there was a better or more positive way to say it but they found two new growths in her brain.  WHY?  Her last MRI only two months ago was stable.  There was no new growth.  Now, in such a short amount of time two tumors were able to grow at a rate that they are visible and once again affecting Macey physically and emotionally.  Macey broke down.  My wife broke down.  I felt like someone just stuck a knife in my heart and gutted me right there in the patient room we sat in as we were told and shown the news. 

So what now?  The unthinkable.  Just when Macey started feeling like she was past all of the difficult problems associated with Radiation, Chemo, the meds etc, she is now once again faced with doing it all over again.  Our poor, sweet daughter has to go back to square 1.  We are going to do everything we can to keep her strong and healthy.  We will be right by her side fighting this thing with her.  I told her we are 7 individuals in our family but we are one unit.  She suffers we suffer.  She's sick we are sick.  She gets scared, emotional, we get scared and emotional.  I told her we are in this together and we are all taking this roller coaster ride as a team. 

I posted a little link called Chipin below this post.  We don't normally ask and have been able to pretty much carry the load and financial burden of all of this.  But with the change in my job as I talked about and the new challenges we now face, we are trying to build up Macey's Charity.  So if there is anything you can do to help her/us, regardless of the amount, we would be forever grateful to your kindness.  We feel weird and uncomfortable for asking, but we are in that cliched line of "desperate times call for desperate measures".  So forgive me for asking.  We no longer have a choice. 

A little bit about these two new growths and their locations.  Plus I'll post the slides from today so you can see what they and we are now seeing.  One is located on the top left side of her head towards the front and very close to the surface.  This is good because it's very treatable and could probably be resected.  They don't want to remove it though because she would have to wait to heal before they could radiate the second tumor which is more of a concern.  So they are going to use pinpoint focused radiation on this one small area.  The second tumor is located in her cerebellum.  It's on the lower right side and it's going to have to be radiated along with chemo during the 6 week radiation plan.  The doctors are optimistic that she will respond well to the treatments since she did so well with her first diagnosed tumor.  We are staying positive and praying that will be the case. 

Macey, we love you so much and don't think it's fair that life has handed you such a terrible thing to deal with.  As your Father, I would take this all away from you and suffer until the end if I knew you would be healthy and happy.  I would trade my health and happiness for an eternity of torture for myself if I knew you were going to be ok.  I'm sorry beyond words sweetie.  But I can promise you, your Papa bear, your Mom and all of your Sisters are going to be by your side even more during round two. 

Please continue to reach out to Macey.  She needs your love and support more than ever.  We need that angel that was helping her earlier.  We need a miracle and are desperate for anything at this point to intervene and make it better for her.  I cannot stand to see my kids suffer.  It's eroding me from the inside out.  It's killing me and I can hardly stand to see how it's affecting my wife and other daughters.  We all feel and share her pain, worrying, and suffering.  But the most important thing we share is unconditional love. 

Here are the slides of these little demon bastards that keep showing up in my daughters head.. 

This is the one in her cerebellum. You can see the more white area which is the suspected problem.

This is the smaller, more defined tumor in the front left side of her head.  This one shouldn't be hard to treat.

Please Help Macey.

Macey today

Hey everyone, again time to give a few updates about Macey.  We started her in a well needed neuro-physical therapy.  The other therapies we have taken her too don't seem to really specialize in brain tumors.  So this particular rehabilitation center specializes in this type of treatment and we could tell from the moment the therapist started with Macey that they knew how to deal with her situation.  One problem.  The minute we started Macey in this program she started feeling weird.  She has been very emotional the last few weeks and keeps saying she feels dizzy and not right again.  These were the things she said in the beginning before we knew of her tumor.  So needless to say this is upsetting to hear and scares us some.  We called her doctors at the Hunstman Cancer institute and they said, the last MRI, which was only a couple weeks prior, showed no new growth and that they didn't think her symptoms were tumor related.  So what is it then?  We have postponed her treatments until she starts feeling better but have had her exercising at home and riding the recumbent bike like they suggested for her. 

The dizziness and feeling of dream-like reality continues to bother Macey.  Her doctor called in a prescription for antivert to help with the dizziness.  Not sure we liked the effects of this drug.  Made her almost zombie-like and as usual with most psychosomatic drugs, tired.  Is there not something she can take to help her that doesn't turn her into a vegetable?  Other than than those symptoms, she seems to be ok.  It seems like she has been a little slower this week walking and I've noticed some changes in her.  With a recent MRI showing nothing new, we continue to stay positive that this is just another one of those stages that will come and go and that she will be fine.  She has an MRI scheduled for the middle of October.  Hopefully we'll hear and see more good things.  Macey turns 21 on the 21st of October.  Remember, she was 19 when she was diagnosed and when we first heard the news was wondering if she'd see her 21st bday.  She will see her bday and many more.  We are determined. 

We are trying to get Macey scheduled to attend the Cancer Treatment centers of America in Tulsa.  Seems to be a lot of good things about this hospital.  They are a fully encompassed treatment center.  Meaning they deal with treatment, rehab, diet, counseling, everything.  I hear the doctors are good and we really feel another set of eyes and opinions on her condition couldn't hurt.  So we are finding ways to plan this and get her there ASAP. 

Things have been a little difficult for us recently too as a particular manager where I work decided that my daughters condition was not conducive for his plans with me at work.  So he pushed me out, forcing me back to SLC.  It's a good and bad situation.  It's good because I'm home and I'm with Macey everyday.  It's bad because financially it cut our income in half.  We were already just keeping our heads above water so the  new challenges this presents are so daunting that if I think about it, I will literally go into a state of panic.  Apparently having a sick child, a family dealing with life changing, emotionally draining events wasn't enough for us as a family.  A very self-centered, non-compassionate (expletive) decided we needed more sh** to pile onto our already mounting pile.  So thank you.  You know who you are.  And as the world has always been so kind to give back in the form of karma, I truly feel you'll get yours.. 

We march on as a family and we fight through each day and try to find the goodness in the hand we have been dealt.  We normally do very well since we are so close and surrounded with loving friends and family.  We all have our down days and Macey still gets emotional and cries.  Can't blame her.  She has dealt with this far better than most I'm sure.  Thanks again for the continued love and support.  We'll keep everyone posted as to upcoming charities and events to help in the continued care for Macey. 

Peace and love. 

Car Show At Harmon's in Farmington

Hi everyone!  Just wanted to post this here as we are trying to spread the word in any way possible.  We are going to be doing a car show for Macey on August 11th at the new Harmons in Farmington.  It's just off the Lagoon exit to the West of the freeway.  It will start at 9 a.m.  and end around 11 a.m. or whenever we get done.  Please come out and support Macey.  If you want to enter the show with a car it's $20.  If you are just a spectator, come on out it doesn't cost anything.  We are giving away some pretty cool prizes so don't miss out!  Thanks and hope to see some people there!!

Race to Beat Cancer / Race for Life

Recently, this year to be exact we set our sites on a completly unique way to raise cancer awareness and to help raise money for charities.  When I was overseas we bought our dream car in 2010.  A Camaro SS.  The car was quite the project for me and I had lots of plans for it.  Most of those have been cut short due to having to come home and also changing the focus to my beautiful daugther Macey.  I came up with an idea several months back after spending a night racing at Rocky Mountain Raceway.  Why don't I have my daughters drive the car and do so in support of their sister?  What better way to get the worlds attention than to have two cute girls driving a real nice car at public events?  So I hauled them down to the tracks on a test and tune day.  Basically gives the drivers a chance to tune their cars for racing and test them on the track.  That day, another friend of mine who has a very similar Camaro where trying to run below 13 seconds in the 1/4 mile.  We couldn't quite break into the 12's.  So, I decided to let the girls give it a shot.  Remember, they have never driven in a sanctioned race in their lives.  So we flipped a coin and Maranda got to go first.  She stages, waits for the lights, gets the green and away she goes.  When she gets to the end of the track she clocked a 12.7!  WOW!  We were all blown away!  So immediately I'm thinking, these girls are naturals.  After that it was Alyssa's turn.  My friend who was also struggling to get into the 12's decided he would race against Alyssa.  I told him they aren't timid and they are fearless.  So Alyssa and my friend line up.  They get the green light and both take off.  Guess who wins?  Yep, Alyssa.  So to make a long story short, two girls, one day, and they made all of us guys look bad.  But for me, it felt fantastic seeing my girls do so well.  At that moment I knew this would be a great way to spread the word.  So we have been putting together a promo for local events, trying to find sponsors, and see how far we can ride this wave of public awareness.  We plan on doing some fun drives for charities with proceeds going to places like the Huntsman Cancer Institute and the National Cancer Society.  Most importantly, we are doing something as a family, for a good cause, and hoping to bring an end to such a miserable and dreaded disease. 

Come out sometime to Rocky Mountain Raceway and support our girls while they "Race to beat Cancer" or "Race for life" (can't decide which one sounds better).  The races are  usually every other Friday.  You can log onto RMR's website and click on schedule.  It's the Street legal series and the midnight drags.  Since the girls drive so fast they were put into the Pro Street category.  Imagine that.

Alyssa and Maranda Promo Shot

 Another promo shot of the girls and the car

Maranda's first run at RMR

http://www.youtube.com/watch?v=UvNyPUZiAhE

Alyssa's first Run at RMR

http://www.youtube.com/watch?v=5KMpR1zGuvo

A much needed update..

Hi everyone!  So sorry it has taken so long to update this blog.  Been a very busy family and since I am the one that writes this blog I have to admit that the traveling between Utah and Nevada is wearing me out and I have procrastinated beyond excuse. 

Macey is doing good.  Although that gosh darn walking thing has really thrown a wrench in what would really make her feel 100%, we continue to hope that the neuro damage will find ways to heal itself so Macey can start walking more efficiently on her own.  Other than the walking she has done remarkable.  We just had another follow up MRI last week and the results were good.  No signs of any new growth and what's left of the tumor that the radiation and chemo eradicated, even looks a bit smaller than last time.  Like we have always known, Macey is strong, super-healthy, and surrounded by so much love and support.  It all matters and it's been nothing short of miraculous watching how well she has done. 

It's hard to believe it's been almost 1 year since the tumor was discovered.  Macey will be 21 in October too.  She insists that she is going clubbing with her Sisters so she can say she's done it.  LOL.  If I have to carry her around I will help her make that happen. 

Our last visit to the Huntsman Center in SLC was also very positive.  Macey's reflexes and coordination on her right side seem much better.  Her arm shows the most improvement.  Her right arm actually looks and seems completely normal but it's a little weaker than the left.  Her right foot is the biggest problem.  She can feel, she just can't send commands from her brain to her foot to make the stubborn thing move.  Sort of impairs your walking when your foot feels totally numb.  Ever wake up or sat on your leg wrong until it's completely asleep then suddenly stand up and try and walk?  This is what Macey's leg feels like all the time.  But we see it improving.  Slow, but definitely improving.  We'll take what we can get. 

Macey had to deal with wearing those miserable hats while she went through radiation and chemo and she lost most of her hair on top.  There was some at the very back that never fell out but by the time she lost most of it, she made Angie cut it short.  Well, good news is her hair is still growing like crazy.  It's short, but it looks really cute on her.  I think she likes this look much better than the bald look.  Since the last time I posted her hair had started to grow but was kind of fuzzy and not filled in.  Well it's looking fabulous now!  I will include a current picture of her.  Still as beautiful as ever.  Some of you have seen her on Facebook but there are others that read her blog that have not seen this picture. 

Our family is strong, there is much love shown, and we continue to support Macey and show her all the love in the world, along with help her in every way we can.  Since her benefit video, you can see a dramatic change in her speaking too.  She isn't stammering or looking for words as much and I really feel we pretty much have our Macey Moo back in full form. 

To all of our friends and family who have continued to  pray for our daughter and show the love you have shown, we thank  you all from the bottoms of our hearts and want you to know how much it means to Macey and the rest of us.  We can't thank you enough and cannot tell you how much we love you back for being so gracious and selfless with your time for Macey.  I have seen people come from all walks of life offering love, prayers, and support for Macey and it's a true testament to how beautiful the human spirit really is.  Please continue doing what you are doing because it's all working to keep her healthy. 

I promise I will try and give you all updates more frequently.  It's been awhile and again I apologize.  Macey is doing awesome and we are so very thankful.  Until then, love you all!

Our Beautiful Macey

Walkin' on Sunshine!

So this week set the tone of some very exciting things for Macey and all of us.  We have been working Macey out every day trying to strengthen her right side.  We have spent time walking her around the house and preferably the kitchen since the floor is easier for her feet to glide across.  With the assistance of our hands to hold onto or something nearby, Macey has been walking around with our help.  About a week ago I decided it was time to let go of Macey's hands forcing her to find her own balance.  In 7 days time, Macey has went from just trying to balance herself without falling to taking her first couple of steps without help.  It looked a little rough at first but she was able to pull her weakened right leg forward and take a step or two before losing her balance and needing my help.  The next night of her attempts to walk on her own she took 5 steps without help.  Each night kept getting progressively better until the night before last she went 13 steps on her own!  This isn't the best part yet.  Last night I was helping her walk around again, getting her warmed up for her solo attempts wondering if she could beat her 13 steps from the previous night.  Referring back to Macey's adapted name of Miracle Moo, it seems as though she continues to live up to it.  I let go of her and not only did she walk, she walked with what looked to be very natural, very normal steps.  I lost count of her steps because I was so excited I couldn't believe what I was witnessing.  She had to of doubled the 13 steps from the previous night or more!  Macey walked across the kitchen, to the other side without hesitation or falter.  She got so excited too it finally messed her rhythm up a bit and she had to stop.  Now, once she's stopped she just grabs the edge of the island in the kitchen and continues to walk around on her own.  She took several more steps un-assisted last night and is looking so much better than even 7 nights ago that it's literally mind blowing! 

Macey asked me the question the other day, "will I be able to walk again"  and "do you think I'll be able to walk before summer"?  My answer to her now can proudly state "no, you will not be walking by summer, because you are already walking now!"

At this point in time it's only going to be a matter of strengthening Macey's legs and forcing her to walk every day.  She has made such monumental improvements in only 7 days that I am confident now that Macey will regain her independence soon.  We are so proud of her and so excited that she is doing so well with everything. 

We also got the results back from another MRI last week and everything continues to look good.  Macey's hair continues to grow and it's getting longer and more beautiful each day. 

We'll keep you updated as her walking improves.. 

We love you Macey!

Update for Moo Moo

Macey just finished her monthly dose of chemo.  We had to lower her dosage because her blood counts were a little low from the last round.  She still seems to tolerate it pretty well.  It does upset her stomach and makes her very tired.  Within a few days after her treatment however she starts getting more upbeat. 

Mom has been working with her everyday on her exercises trying to get her right side stronger.  This would be such an easier thing for Macey and everyone to deal with if this *$#@ tumor hadn't messed up her ability to walk.  Macey wants so bad to be able to get around or just go somewhere if she feels like it.  Not so easy right now.  Until we can get her strong enough to walk on her own it's going to be a challenge.  So we'll just press on with the physical therapy and hope and pray that her nerves repair and she starts getting some more feeling in her leg.  She has made improvements though, still just not as fast as we were hoping for.

Macey had been taking such a low dose of Vimpat (for seizures) that we have felt all along that she doesn't need the drug.  Besides it making her feel like crap God only knows what using it for long periods could do to her.  The only seizure Macey ever had was the one right after her surger/biopsy.  Of course her brain would have been agitated.  Her neuro surgeon said that he normally likes to give a "pass" or "get out of jail free" card if you will when it comes to making a patient take seizure meds if they've only had one seizure.  The Huntsman Center preferred that she stay on the drug but Macey and her parents felt it wasn't necessary so we slowly lowered her dosage and took a few weeks to drop it down to nothing.  She has been off the medication now for a week and is doing wonderful.  She's not as shakey, doesn't feel dizzy anymore and said the "halos" she was seeing around lights are gone.  I think we made a good choice.  We have other drugs on standby if she starts feeling like she did the one time she had a seizure.  If that happens, we'll probably have her put back on the meds, but until then, she's off. 

For the most part Macey is doing fine.  She is getting very bored with the daily routines and not being able to get around but really is so amazingly strong.  She has her moments and she breaks down and who can blame her.  She feels like she is stuck in a nightmare (which she is) and just wants to get better.  We continue to encourage her, tell her she can beat this thing and shower her with affection and love.

We'll update more as things change.  It's been awhile since I posted but things were pretty stable and there hasn't been a lot to talk about.  Until then, keep Macey in your thoughts and prayers.  Thank you.

Macey's progress and latest MRI results

Hi everyone!  It seems to get fewer and far between on my posts for Macey.  We've been a very busy family and since I am the one that writes on this blog, I too have been incredibly busy with family, work, and school.  Just like Macey, Dad decided to jump in too and start my degree in Computer information systems.  I've finished my first week and it was a little awkward at first.  I've been out of school for 27 years so this was sort of a shock.  Anyway, enough about me.  On to our Miracle Moo.

Macey had her MRI appointment last week to follow up since she started her maintenance chemo therapy.  Her results still look good.  The tumor appears to be fading a little more.  Any progress, any sign that it is diminishing is good for us.  Positive news is what we crave and any positive news, even in the slightest makes us happy and gets us through to the next round.  Macey is so strong and so full of life I don't think she will allow this thing to exist much longer in her head.  But it's very comforting to know that she is making progress.  Still battling the walking part.  Her right side is still giving her problems and we had hoped that it would be a little better by now.  But, we forge ahead and continue to work her arms and legs and keep her strong as she continues to get better. 

Macey has worn her cute beanie hats pretty much 24/7 since she started losing her hair.  Lately though, she's been inclined to take it off because of what's going on underneath it.  Her hair is growing like wildfire and she's very excited.  It's hard to understand but there are so many things that have taken Macey's confidence.  Her hair being one of them.  She is on her way though to getting back to the Macey she was before the treatments.  It's awesome seeing her beautiful, lush hair start to grow again.  :)