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.
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