My family thinks about Macey every second. We are still so stricken with grief it has made day to day life very difficult to handle. Our family feels different and that wonderful chemistry that we shared as a group has been altered with the loss of our daughter. We all feel as though we are living in an alternate existence now and still can't believe this has all happened. It shouldn't of happened and we struggle with why us, why our family and why our precious daughter. Macey was a light to this world and without her here it's become a darker place. We find strength in each others love and support and without each other I think we would all surely be lost. Anyway, I think about her often, write things down about her many days, don't share them all but wrote this last night. It's not complicated or deep, just a glimpse into how I was feeling and continue to feel.
WHY
Why can't we have you
To dry away our tears
Why can't we see you
To ease or loss and fears
Why can't we hold you
The sun will rise again
Why can't we love you
Break the news to your friends
Why can't we hug you
And smell your sweet perfume
Why can't we see your smile
It lights up every room
Why can't we laugh with you
Until it hurts inside
Why can't we tell the world
You're still here and alive
Why can't we have one more chance
To see you in the morning
Why can't we sit with you
And talk until it's boring
Why can't we share the little things
The significance wouldn't matter
Why can't we cry with you
As you climb up life's big ladder
Why does it have to be this way
We'd do anything for one more day
Why can't we see you soon
When the setting sun brings the moon
Why is this world such a cruel place
It takes away and gives no slack
Why can't we have just one more day
I promise we'll give you back.
Sunday, August 25, 2013
Thursday, May 16, 2013
Tragic end to a beautiful Life.
Our beautiful, sweet daughter passed away May 13th, 2013 at approx 3pm. She was surrounded by her entire loving family.
As you will read from the start of this blog, our family and Macey had nothing but hope, even though we knew we were faced with a very ugly cancer that had a very grim prognosis. It didn't matter, we instilled a continual sense of hope and encouragement and never once did we tell Macey that she didn't have a chance. We would never want her to feel that this could beat her. And it showed, she stayed so positive and so strong. Macey just wanted to get better. It was her dream to walk again. We would have taken her with the walking issue. We would have taken her in any form. We just didn't want her to go. But all of the wanting and the hoping, praying and loving in the world wasn't enough to save her.
We are devastated and hurt. Worse, is that Macey didn't get a chance to live her life, get married, have kids and watch her family grow up and grow old together. Tragic is an understatement.
We will miss our loving daughter every second for the rest of our lives. We had her obituary posted if you want to look at it. It also mentions the place and times for her funeral.
Thanks to everyone who followed her blog, shared with the love and support for my daughter and for all of the outpouring of love and support from so many people. Macey and my entire family are immeasurably thankful.
Macey's Obituary
As you will read from the start of this blog, our family and Macey had nothing but hope, even though we knew we were faced with a very ugly cancer that had a very grim prognosis. It didn't matter, we instilled a continual sense of hope and encouragement and never once did we tell Macey that she didn't have a chance. We would never want her to feel that this could beat her. And it showed, she stayed so positive and so strong. Macey just wanted to get better. It was her dream to walk again. We would have taken her with the walking issue. We would have taken her in any form. We just didn't want her to go. But all of the wanting and the hoping, praying and loving in the world wasn't enough to save her.
We are devastated and hurt. Worse, is that Macey didn't get a chance to live her life, get married, have kids and watch her family grow up and grow old together. Tragic is an understatement.
We will miss our loving daughter every second for the rest of our lives. We had her obituary posted if you want to look at it. It also mentions the place and times for her funeral.
Thanks to everyone who followed her blog, shared with the love and support for my daughter and for all of the outpouring of love and support from so many people. Macey and my entire family are immeasurably thankful.
Macey's Obituary
Sunday, March 24, 2013
Rough Road Ahead
So as some of you have watched on Facebook, Macey started a series of treatments with an intravenous drug called Avastin. This is supposed to help her overall and now it's really needed. Macey has become so weak and can hardly sit upright now and has a hard time eating, swallowing and talking. The latest MRI shows lots of changes but they are unsure if it's from the radiation or from new tumor growth. The doctors said nothing too alarming because if it's tumors, they don't look very big? What? We know from the past scans that if Macey has any tumor growth that these SOB's are aggressive. They grow very fast and we are hoping this is not the case. Most of the problems now are centered around the base of her brain and some of them track down the neuro-fibers that go down towards the base of her brain. Worse is they interfere with her motor functions and you can see the changes in her. Dramatic changes. Changes that worry us sick and have left us all with a feeling of discontent and uneasiness.
If you have been praying for Macey we appreciate it but also want to tell everyone to increase their prayers and hopes for her. She is not doing well and you can see it in her physically and emotionally. My family is having such a hard time dealing with all of this but most importantly, Macey, our beautiful daughter is the one trapped in this seemingly winless battle with a disease that is unrelenting.
My Sister flew in again to see Macey this week and if we can work anyone in interested, you should come see her. Please be patient though as Macey's condition, and our moods change by the hour and there are some days when we just don't have the ability to be social and have company. We do want you all to see her though.
These treatments are really the last hope for our daughter. If she doesn't respond, the scenario is grim. We've never been negative about her situation and will to fight and live, but this thing doesn't play fair. Her chances with this Avastin are about 50/50. The Docs don't know for sure, and no one knows the prognosis or the outcome, other than it being critical and leaning towards the "not good" side of things. We will continue to stay strong, help Macey fight and most importantly try and keep her happy and strong in what quality of life she has left.
We all love you Macey and we will rally around you sweetie. We will work ourselves to death trying to keep you comfortable and happy. No matter what, in this life or the next, our love for you will be unyielding and forever ubiquitous. It's hard for you to read, or talk right now, but writing it, I know somehow, some way you'll see it and understand.
Thank you everyone for your continued support and efforts.
All our love, the Steckelberg's.
If you have been praying for Macey we appreciate it but also want to tell everyone to increase their prayers and hopes for her. She is not doing well and you can see it in her physically and emotionally. My family is having such a hard time dealing with all of this but most importantly, Macey, our beautiful daughter is the one trapped in this seemingly winless battle with a disease that is unrelenting.
My Sister flew in again to see Macey this week and if we can work anyone in interested, you should come see her. Please be patient though as Macey's condition, and our moods change by the hour and there are some days when we just don't have the ability to be social and have company. We do want you all to see her though.
These treatments are really the last hope for our daughter. If she doesn't respond, the scenario is grim. We've never been negative about her situation and will to fight and live, but this thing doesn't play fair. Her chances with this Avastin are about 50/50. The Docs don't know for sure, and no one knows the prognosis or the outcome, other than it being critical and leaning towards the "not good" side of things. We will continue to stay strong, help Macey fight and most importantly try and keep her happy and strong in what quality of life she has left.
We all love you Macey and we will rally around you sweetie. We will work ourselves to death trying to keep you comfortable and happy. No matter what, in this life or the next, our love for you will be unyielding and forever ubiquitous. It's hard for you to read, or talk right now, but writing it, I know somehow, some way you'll see it and understand.
Thank you everyone for your continued support and efforts.
All our love, the Steckelberg's.
Sunday, January 20, 2013
Updated Donation Information
Hi everyone,
we thought we would add the chipin link again. It expires and we don't realize it. Again, thanks to those that have donated. Your contributions have been helpful beyond words. We are very thankful as a family that there are so many thoughtful people in the world. And for the record, beyond any kind of monetary donation, your prayers are a huge spiritual donation that means just as much to us. Thank you for keeping Macey in your thoughts and prayers.
Macey is doing ok. She is still weak, can only sit up in her wheelchair and cannot really do anything else on her own. My poor wife struggles daily when I am at work lifting her in and out of her chair to try and help Macey with her needs and it is physically demanding and very difficult. You have to remember that Angie is only 5'-3" and Macey is 5'-6" and about 120 pounds. Amazingly though, somehow Angie finds the strength to lift her in and out of her chair and does such an amazing job with her. I fear for her health, her back and her emotional state on a daily basis though. We are all strong as a family, but we all continue to teeter on that cliff, on the edge, of literal sanity.
We hope this year brings better things for Macey. She needs a break. She needs time to heal and get some rehabilitation. We hope this cancer leaves her alone. Here's to a great new year.
we thought we would add the chipin link again. It expires and we don't realize it. Again, thanks to those that have donated. Your contributions have been helpful beyond words. We are very thankful as a family that there are so many thoughtful people in the world. And for the record, beyond any kind of monetary donation, your prayers are a huge spiritual donation that means just as much to us. Thank you for keeping Macey in your thoughts and prayers.
Macey is doing ok. She is still weak, can only sit up in her wheelchair and cannot really do anything else on her own. My poor wife struggles daily when I am at work lifting her in and out of her chair to try and help Macey with her needs and it is physically demanding and very difficult. You have to remember that Angie is only 5'-3" and Macey is 5'-6" and about 120 pounds. Amazingly though, somehow Angie finds the strength to lift her in and out of her chair and does such an amazing job with her. I fear for her health, her back and her emotional state on a daily basis though. We are all strong as a family, but we all continue to teeter on that cliff, on the edge, of literal sanity.
We hope this year brings better things for Macey. She needs a break. She needs time to heal and get some rehabilitation. We hope this cancer leaves her alone. Here's to a great new year.
Sunday, December 23, 2012
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
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
Monday, November 12, 2012
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.
Thursday, October 25, 2012
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!
Tuesday, October 9, 2012
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..
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.
Tuesday, September 25, 2012
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.
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.
Saturday, July 28, 2012
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!!
Monday, July 16, 2012
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.
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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
Alyssa's first Run at RMR
Thursday, July 12, 2012
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!
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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
Sunday, March 4, 2012
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!
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!
Friday, February 17, 2012
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.
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.
Tuesday, January 10, 2012
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. :)
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. :)
Tuesday, December 27, 2011
A Scholarly Moo
So our little Moo Moo decided that she's done with sitting on the couch and being bored out of her mind. A couple of her family members have either enrolled in or have started college and Macey felt it was time for her to do the same. So, today we signed her up at Colorado Technical University and she will be pursuing her bachelor of science degree in Business Management specializing in Human Resource Management. She will be able to complete 100% of the curriculum online. We are so proud of her and look forward to her achieving her educational goals. She has decided to put a culinary arts degree on hold, because of her current physical limitations and said she would actually be more happy learning how to cook for her own entertainment while she pursues this new plan of education. We will support Macey in everything she does and are excited to see her stimulate her mind and expand her future prospects.
Congratulations Macey on your choice to start college!
We love you!
Dad, Mom and your Sisters
Congratulations Macey on your choice to start college!
We love you!
Dad, Mom and your Sisters
A very Moo Moo Christmas!
Christmas turned out fabulous and Macey had a great time. Especially since the entire family was here and we got to celebrate together. Normally I (Dad) am out of town for work on the holidays so it was nice to be home with everyone. Macey got lots of cute things. She got loaded up on clothes, bath and body stuff, jewelry, a Kindle Fire (so did Kylah her little Sister), and lots of grippy socks for walking. She loves all of the gifts from everyone and wanted me to post here and thank everyone again!
Dee Ann and Jay Nye who we met from Macey's benefit at Fat Cats and from the Cancer benefit at McKay Dee, stopped by and dropped off some amazing gifts for Macey. That was incredibly sweet of them to do and Macey wanted me to personally thank you, if you are reading this and that she loves you all!
New Years should be fun too. We will celebrate New years day since that is when I will be home. We are looking forward to 2012 and will be looking for more miracles with Macey and further improvement. Macey has done very well and her progress is positive, a little slow at times, but positive. The good thing is nothing negative has transpired and she definitely hasn't gone backwards. So we are grateful for even the tiniest of improvements.
Happy Holidays to everyone and from Macey and the entire family thank you all for everything.
All our love,
The Steckelberg's
Dee Ann and Jay Nye who we met from Macey's benefit at Fat Cats and from the Cancer benefit at McKay Dee, stopped by and dropped off some amazing gifts for Macey. That was incredibly sweet of them to do and Macey wanted me to personally thank you, if you are reading this and that she loves you all!
New Years should be fun too. We will celebrate New years day since that is when I will be home. We are looking forward to 2012 and will be looking for more miracles with Macey and further improvement. Macey has done very well and her progress is positive, a little slow at times, but positive. The good thing is nothing negative has transpired and she definitely hasn't gone backwards. So we are grateful for even the tiniest of improvements.
Happy Holidays to everyone and from Macey and the entire family thank you all for everything.
All our love,
The Steckelberg's
Wednesday, December 14, 2011
McKay Dee Cancer Benefit Held Last Night
We had the privilege of attending a dinner / auction fund raising event for the McKay Dee cancer foundation. This is put on every year and driven by Dee Ann Nye, an incredibly sweet, caring and loving woman who became immediately attached to Macey when she met her at her Fat Cats fund raiser. Dee Ann lost her daughter Jaynie, who was only 15 years old, to cancer. Since then she has used her inspiration, her story to help others in their fight against such a terrible disease. Macey was an honored guest last night and Dee Ann told everyone at the event during her speech how much Macey meant to her. It was such an overwhelmingly emotional evening for the entire family.
The wonderful committee of people who all help put this fund raiser together produced a very moving, very powerful video. Macey and most of the family were featured speakers in it and it turned out amazing. Please watch the video in its entirety. Macey and the girls are featured throughout the video and also at the very end. Click on the URL below or copy and paste into your browser and enjoy. Thank you.
http://www.youtube.com/watch?v=2f1V1UiaSW4&feature=youtu.be
The wonderful committee of people who all help put this fund raiser together produced a very moving, very powerful video. Macey and most of the family were featured speakers in it and it turned out amazing. Please watch the video in its entirety. Macey and the girls are featured throughout the video and also at the very end. Click on the URL below or copy and paste into your browser and enjoy. Thank you.
http://www.youtube.com/watch?v=2f1V1UiaSW4&feature=youtu.be
Wednesday, November 30, 2011
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!
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!
Sunday, November 27, 2011
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..
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..
Saturday, November 26, 2011
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!
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
Thursday, November 17, 2011
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!
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!
Friday, November 11, 2011
How we survive
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".
Tuesday, November 8, 2011
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..
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..
Tuesday, November 1, 2011
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...
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...
Sunday, October 30, 2011
UPDATE
It's been quiet since the big Fat Cats event. Macey has been taking it easy at the house and letting her body recover from her 5 weeks of treatments. She seems to be more up in spirits and when we help her walk she feels stronger. It looks as though she steps more with her right leg now rather than pulling it around like she was doing. We are all waiting patiently for some signs of improvement. Her docs have all said there is no set time of when or how quickly she will regain some or all of her mobility in her right side. It's mostly a watch and wait game. So that's what we have been doing, watching and waiting.
Macey continues to get stronger and we still truly believe the outpouring of love she receives everyday is key in her healing process. Her mental state is good but she still has moments of weakness when everything hits her. The way you survive an ordeal like this is by keeping your focus off of what is wrong or the negativity associated with this disease. You can't help but think about it sometimes though and it's those moments that really test a persons will and mental strength. Macey's ability to stay focused takes an inner strength that is so incomprehensible that her will alone transcends the power of Cratus. She has been called a hero by many of her friends and family. I am her father and she is definitely my hero. We will continue to love her, support her and keep her "will" iron clad.
Hoodies: Just wanted to let everyone know too that the hoodies you ordered are being completed and we should have them next week. We'll start contacting you all as soon as they are done. Thanks for being patient.
Tomorrow Macey goes in for an MRI and we will give you all an update afterwards.
Thanks everyone!
Macey continues to get stronger and we still truly believe the outpouring of love she receives everyday is key in her healing process. Her mental state is good but she still has moments of weakness when everything hits her. The way you survive an ordeal like this is by keeping your focus off of what is wrong or the negativity associated with this disease. You can't help but think about it sometimes though and it's those moments that really test a persons will and mental strength. Macey's ability to stay focused takes an inner strength that is so incomprehensible that her will alone transcends the power of Cratus. She has been called a hero by many of her friends and family. I am her father and she is definitely my hero. We will continue to love her, support her and keep her "will" iron clad.
Hoodies: Just wanted to let everyone know too that the hoodies you ordered are being completed and we should have them next week. We'll start contacting you all as soon as they are done. Thanks for being patient.
Tomorrow Macey goes in for an MRI and we will give you all an update afterwards.
Thanks everyone!
Saturday, October 22, 2011
Fat Cats was a Success!
Amazing turn out at Fat Cats. I can't tell you how happy Macey and our family is about the turn out last night. It was so incredible to see all of the love and support for Macey. Macey couldn't have been more happy and touched by each and everyone of you for being there. There were even people we didn't know coming by to show their support for Macey. Last night epitomized the true beauty of the human spirit and the gifts and donations were selfless acts of kindness and love. Even though I didn't know everyone there, I'm quite certain Macey and my daughters knew almost everyone. I would like to personally thank the following people for going out of their way to make this event happen and for the wonderful donations and support.
Fat Cats - For setting up the rooms, donating some of the prizes and accommodating our requests and giving us a place to make this all happen. Thank you Christie and Rachel.
Hazen Photography - For bringing the breathtakingly beautiful framed prints of our girls. For those of you who didn't know, those beautiful works of art were created, printed and framed literally hours before the event. Hazen Photography was gracious and kind to do this for Macey and Maranda and we are thankful beyond words. As you can see too, their work and those photos say it all. In this case a picture is worth a thousand words. And our family would like to say a thousand thank you's to Teresa and Ryne Hazen and all those involved in creating those works of art so quickly.
97.1 ZHT and the Morning Zoo - For helping us to promote the benefit for Macey. They were more than willing to help out and even let us come to the studio to talk about the event on the radio. So thanks again Frankie, DB, and Jess!
My Family - I would like to thank my wife and daughters for putting this together and for dealing with their impatient Dad when things got a bit stressful towards the end. You are all beautiful, understanding, patient and the perfect balance of making our family so special. I love you all!
And last and most importantly, our family and friends! - The Miracle Moo benefit wouldn't have been successful without each and everyone of you. Thank you for being supportive, thank you for loving my daughter and thank you for the very generous donations. It will help Macey so much.
The Travelers - The Cheney family for driving so far, even though you were all exhausted. Again, no words to describe how thankful we are for you. Macey loves you all so much and your presence meant the world to her. Also, Marty Lewis from work who drove a long way with his little girl to show support for my family. Marty and the guys in the lab where I work are awesome. So thanks to all of you!
We will continue to fight this terrible disease with Macey and with the love and support we have behind us, Macey's Unyielding strength, determination, and positive attitude, there is only one possible outcome. Victory! We will win, we will beat this and we will never accept anything less...
Fat Cats - For setting up the rooms, donating some of the prizes and accommodating our requests and giving us a place to make this all happen. Thank you Christie and Rachel.
Hazen Photography - For bringing the breathtakingly beautiful framed prints of our girls. For those of you who didn't know, those beautiful works of art were created, printed and framed literally hours before the event. Hazen Photography was gracious and kind to do this for Macey and Maranda and we are thankful beyond words. As you can see too, their work and those photos say it all. In this case a picture is worth a thousand words. And our family would like to say a thousand thank you's to Teresa and Ryne Hazen and all those involved in creating those works of art so quickly.
97.1 ZHT and the Morning Zoo - For helping us to promote the benefit for Macey. They were more than willing to help out and even let us come to the studio to talk about the event on the radio. So thanks again Frankie, DB, and Jess!
My Family - I would like to thank my wife and daughters for putting this together and for dealing with their impatient Dad when things got a bit stressful towards the end. You are all beautiful, understanding, patient and the perfect balance of making our family so special. I love you all!
And last and most importantly, our family and friends! - The Miracle Moo benefit wouldn't have been successful without each and everyone of you. Thank you for being supportive, thank you for loving my daughter and thank you for the very generous donations. It will help Macey so much.
The Travelers - The Cheney family for driving so far, even though you were all exhausted. Again, no words to describe how thankful we are for you. Macey loves you all so much and your presence meant the world to her. Also, Marty Lewis from work who drove a long way with his little girl to show support for my family. Marty and the guys in the lab where I work are awesome. So thanks to all of you!
We will continue to fight this terrible disease with Macey and with the love and support we have behind us, Macey's Unyielding strength, determination, and positive attitude, there is only one possible outcome. Victory! We will win, we will beat this and we will never accept anything less...
Audrianna Cole, Angela, Amber, Macey and Dad trying to fix
the Wheelchair, moments before I about tore my finger off..
Macey, Mom and Kylah on the far right sitting next to
the beautiful prints Hazen Photography donated.
Tuesday, October 18, 2011
Flyer for Fat Cats - Print and Bring with you!!
If you plan on coming to Fat Cats this Friday the 21st, here is the flyer you need to bring. It's not a must but it makes it easier for Fat Cats to track who showed up for Macey. If you can't print it, just be sure and mention you are there for the Miracle Moo event. So here's the flyer. See you all there!!
Just click on flyer to enlarge, then right click and then click "save picture as" and save it to your pictures or desktop. After that, open the file and print. Thanks!
Just click on flyer to enlarge, then right click and then click "save picture as" and save it to your pictures or desktop. After that, open the file and print. Thanks!
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