I know that a post is long overdue. It is just that every time I get started I have to stop because all of the emotion that I can safely tuck away comes flooding to the surface. There is so much that I can write to just get out of my system, but I am afraid to let it out. I am afraid that I won't be able to keep it together to function as a wife and mother or to just be able to make it from one minute to the next.
That being said, we did go to Salt Lake last week for appointments. Marathon appointments is what they should call them. They line up several people to talk to you and you end up being there for hours. Tuesday was long. Wednesday was longer. In a nutshell, they all wanted to make sure that we understood the diagnosis (glioblastoma multiforme) and what to expect. Treatment starts this Wednesday, April 28. Thirty days of radiation and chemo followed by a year of cycled chemo treatments and regular MRIs to watch the tumor.
There was a lot of information, a lot to absorb, and in the end we realize that it doesn't really matter what experiences other patients have had. Yes, their diagnosis might be the same, but the Lord's plan for them is not.
Josh (who of course has much more faith than I) told me that he decided on the night we found out he had a brain tumor (before we knew it was cancer) that he had to put is full faith in the Lord. He decided to have faith that if it was the Lord's will to sustain his life, then it would be sustained.
He told me that was all that mattered and that it was our job to open our eyes to the big picture, to maintain an eternal perspective. We have to take comfort and hope in the fact that the Lord is in charge and is capable of making miracles happen.
So, then in the middle of the night when he tells me that his arm, leg, and face are numb I have to remind myself that overall, Josh isn't scared. I have to remind myself that everything will be ok. I have to turn my thoughts to the outpouring of love and support that we have been shown. I have to immediately say a prayer of gratitude for the goodness inside everyone around us. So many people who have made miracles happen. People who have given time, talents, resources, hearts and minds in our behalf. So much to be thankful for. So much to make me realize that I don't have the luxury of dwelling in the flood of fear. There are evidences all around us, through all of you, that the Lord is aware of us and of our needs. He sends those around us to share their love, to wrap their arms around us and remind us (or me) to put our faith in God.
So again, thank you for everything that is being done and for the constant reminder, which I have sincerely needed.
Sunday, April 25, 2010
Wednesday, April 14, 2010
So much...
I don't really have a lot to post, because we don't really have any new information. I simply have to take the opportunity to thank so many people again. Family members, dear friends, ward members and strangers alike. So many people have and continue to reach out to us during this challenge. There are moments when I have to take a deep breath and dig for the comfort and support that I have felt from all those praying for us, loving us, supporting us and helping us to bear our burden. I just keep thinking about how we have been told that it is often through the hands of another that Lord's work is done. My prayers are frequent and vary in nature, but always include expressions of gratitude for all of you. Please know how much we recognize and appreciate all that is being done for us.
Friday, April 9, 2010
Couldn't you just break your neck?
So, here goes. It might be long.
I am not even sure I will actually publish this. Maybe I will just type it out and forget it. I haven't been able to sit down and actually get it out. It's too hard. Too real. Too close to the surface to actually tell it publicly or semi-publicly since this blog is private. While I am almost 34 weeks pregnant and would probably never like a picture of myself, I love this picture of Josh. (Thanks Mindy, for being so generous and flexible with your time and for taking these pictures).
Many of you probably already know the situation, but in case you don't, or in case you've heard it from someone two or three or eight people down the line... here it is.
Because of a snowmobile accident in December, we assumed the symptoms Josh began experiencing in January were a result of injury. I still remember giggling to myself when Josh came home from a church basketball game complaining that his "game" was off. Seriously? If I had only known.
The fine motor function in the right side of his body continued to decline beginning in his hand and arm and progressing to his leg and foot. When he finally decided that it wasn't all "in his head" he made an appointment with a chiropractor who eventually referred him to another doctor.
After considering all the possibilities and researching online, we were convinced that he may have a C6 spinal fracture. Honestly, the website that Josh found was like a checklist for all his symptoms. Without mentioning his oh-so-intelligent internet findings to the doctor, the doctor came up with the same conclusion.
I was relieved. I honestly thought to myself, "Phew, he just broke his neck." I was horrified by the other alternatives. And a broken neck was something that could be fixed. A little surgery, a few screws to keep his head on his shoulders. NO BIG DEAL. Totally acceptable problem. (Ok, so I am not trying to minimize a spinal fracture. I am simply saying that compared to the other alternatives it was something I could handle.)
The initial MRI of his neck showed that his neck was great. No breaks. No fractures. No pinched nerves. Hmph! We were wrong and so it was time to do some more looking. The doctor ordered another MRI of his brain to just make sure there wasn't anything neurological.
After the MRI Josh made his way to work when he got a phone call to turn around and go right back to the hospital. The doctors wanted to talk to him. He couldn't get a hold of me and then realized he couldn't tell me he had to go back to the hospital. Somewhere in the process he texted me that it might be a stroke. My sweet, always-there-for-you dad met him at the hospital to find out it wasn't that either.
My sweet, always-there-for-you mom and sister met me at my house. Shortly after, my dad and Josh made it home. Josh hesitated and then told me that it was a tumor, but the nature was unknown so we would need to go see a neurosurgeon in Salt Lake. Our appointment was Monday morning. It was only Friday (March 26). We would have to wait all weekend long. All the agonizing weekend long. Too much time to think about the possibilities. Too many sleepless hours to just think and wonder and try to prepare for whatever the outcome might be.
We went to the temple. We found peace. We knew that whatever would happen would be the Lord's will and that He would make it alright.
Monday's first appointment was discouraging. I am pretty sure that if I ever see that doctor again, I might slip and while I am falling, my fist might find it's way into his nose. The one good thing was that he referred us to Dr. Randy Jensen at the Huntsman Center. It was a miracle that we were able to see Dr. Jensen, as it was his day off and out-of-clinic. A tender mercy.
Dr. Jensen was a lot more optimistic and scheduled another MRI for Thursday (April 1) and surgery Friday (April 2). The MRI included a processes called mapping. They basically make a picture of the brain that is so incredibly accurate that the doctor knows EXACTLY what the brain will look like before they even make an incision. The mapping is then used throughout the surgery with electronic nodes that send signals from the brain to extremities and vice versa. That way, damage is minimized if not completely eliminated.
Using this process, they were able to learn that the tumor was deeply integrated into the brain tissue and were only able to extract a small portion of the tumor. It's purpose would serve as a sample for the pathologist. While they were able to come up with preliminary results, Dr. Jensen assured us that we should not be overly anxious and should wait for the final results. More waiting. This time from Friday (April 1st) to Wednesday (April 7). This time Josh would be trying to recover and heal from surgery.
He received TLC from the Neuro Critical Care Unit and physical therapy and then from the Neuro Acute Care Unit.
Determined and strong, my sweetheart stayed positive, in good humor, and close to the Lord. Surprisingly enough, they decided to discharge him Sunday morning. Easter morning. They said he was doing so well there was no use waiting for test results in a hospital bed. The rest of his recovery could be done at home! We missed our boys. We were glad to come home. Glad to see them and get our loves and kisses from each of them. (Even if Aunt Emily is more fun than Mom or Dad).
Wednesday was the day the pathologist would have the final results. The tumor board would meet to discuss the results and best course of action. We hoped we wouldn't have to wait any longer to hear.
The initial tests were confirmed. Cancer. Aggressive cancer. Silver lining? It is brain cancer, which means it is isolated to the brain and didn't originate from another source. Still, it is a high-grade, aggressive cancer that has to be treated right away.
I knew it. Somehow I knew it. I keep thinking about how I wish he could have just broken his neck. How it would be so much easier to deal with, it seems like such a more simple fix. Easier than cancer. Easier than facing what I have feared most. Easier than trying to be brave and happy when I really just want to wake up and everything will be back to normal.
So, taking it one step at a time, we had to wait again to hear from the oncologist that would be over radiation treatments. Fortunately, they called Thursday morning. Unfortunately, our first meeting/consultation won't be until he returns from vacation.
SOOO... until April 21st we are on hold. At least Josh has some time to heal from surgery and we have time to spend with the boys. There, I did it. I got it out.
Now seems like a good time to mention that we have been incredibly humbled and overwhelmed by the love and support of the angels that literally live among us. So many phone calls, kind gestures, prayers, acts of service... every time we turn around there is someone waiting to show us their support. Tender mercies. Answers to prayers. Those who are willing to "lift up the hands which hang down" (See D&C 81:5, one of my favorites) It is more than humbling to be on the receiving end of so much LOVE. Josh keeps reminding me that this is what people are like. This is their nature. People are good, and kind and loving and want to help where they can. How can we ever express our appreciation and gratitude to so much support? We know what we can do will never be enough. We can only pray that the tender mercies we have been shown will be there someday down the road for each one of the angels who surround us everyday. We pray that we can be the ones who "lift up the hands which hang down, and strengthen the feeble knees." In the meantime, thank you. Thank you for recognizing what a good man Josh is. Thank you for recognizing his testimony, his strength, loyalty, work ethic, faith and so much more.
I am not even sure I will actually publish this. Maybe I will just type it out and forget it. I haven't been able to sit down and actually get it out. It's too hard. Too real. Too close to the surface to actually tell it publicly or semi-publicly since this blog is private. While I am almost 34 weeks pregnant and would probably never like a picture of myself, I love this picture of Josh. (Thanks Mindy, for being so generous and flexible with your time and for taking these pictures).
Because of a snowmobile accident in December, we assumed the symptoms Josh began experiencing in January were a result of injury. I still remember giggling to myself when Josh came home from a church basketball game complaining that his "game" was off. Seriously? If I had only known.
The fine motor function in the right side of his body continued to decline beginning in his hand and arm and progressing to his leg and foot. When he finally decided that it wasn't all "in his head" he made an appointment with a chiropractor who eventually referred him to another doctor.
After considering all the possibilities and researching online, we were convinced that he may have a C6 spinal fracture. Honestly, the website that Josh found was like a checklist for all his symptoms. Without mentioning his oh-so-intelligent internet findings to the doctor, the doctor came up with the same conclusion.
I was relieved. I honestly thought to myself, "Phew, he just broke his neck." I was horrified by the other alternatives. And a broken neck was something that could be fixed. A little surgery, a few screws to keep his head on his shoulders. NO BIG DEAL. Totally acceptable problem. (Ok, so I am not trying to minimize a spinal fracture. I am simply saying that compared to the other alternatives it was something I could handle.)
The initial MRI of his neck showed that his neck was great. No breaks. No fractures. No pinched nerves. Hmph! We were wrong and so it was time to do some more looking. The doctor ordered another MRI of his brain to just make sure there wasn't anything neurological.
After the MRI Josh made his way to work when he got a phone call to turn around and go right back to the hospital. The doctors wanted to talk to him. He couldn't get a hold of me and then realized he couldn't tell me he had to go back to the hospital. Somewhere in the process he texted me that it might be a stroke. My sweet, always-there-for-you dad met him at the hospital to find out it wasn't that either.
My sweet, always-there-for-you mom and sister met me at my house. Shortly after, my dad and Josh made it home. Josh hesitated and then told me that it was a tumor, but the nature was unknown so we would need to go see a neurosurgeon in Salt Lake. Our appointment was Monday morning. It was only Friday (March 26). We would have to wait all weekend long. All the agonizing weekend long. Too much time to think about the possibilities. Too many sleepless hours to just think and wonder and try to prepare for whatever the outcome might be.
We went to the temple. We found peace. We knew that whatever would happen would be the Lord's will and that He would make it alright.
Monday's first appointment was discouraging. I am pretty sure that if I ever see that doctor again, I might slip and while I am falling, my fist might find it's way into his nose. The one good thing was that he referred us to Dr. Randy Jensen at the Huntsman Center. It was a miracle that we were able to see Dr. Jensen, as it was his day off and out-of-clinic. A tender mercy.
Dr. Jensen was a lot more optimistic and scheduled another MRI for Thursday (April 1) and surgery Friday (April 2). The MRI included a processes called mapping. They basically make a picture of the brain that is so incredibly accurate that the doctor knows EXACTLY what the brain will look like before they even make an incision. The mapping is then used throughout the surgery with electronic nodes that send signals from the brain to extremities and vice versa. That way, damage is minimized if not completely eliminated.
Using this process, they were able to learn that the tumor was deeply integrated into the brain tissue and were only able to extract a small portion of the tumor. It's purpose would serve as a sample for the pathologist. While they were able to come up with preliminary results, Dr. Jensen assured us that we should not be overly anxious and should wait for the final results. More waiting. This time from Friday (April 1st) to Wednesday (April 7). This time Josh would be trying to recover and heal from surgery.
He received TLC from the Neuro Critical Care Unit and physical therapy and then from the Neuro Acute Care Unit.
Determined and strong, my sweetheart stayed positive, in good humor, and close to the Lord. Surprisingly enough, they decided to discharge him Sunday morning. Easter morning. They said he was doing so well there was no use waiting for test results in a hospital bed. The rest of his recovery could be done at home! We missed our boys. We were glad to come home. Glad to see them and get our loves and kisses from each of them. (Even if Aunt Emily is more fun than Mom or Dad).
Wednesday was the day the pathologist would have the final results. The tumor board would meet to discuss the results and best course of action. We hoped we wouldn't have to wait any longer to hear.
The initial tests were confirmed. Cancer. Aggressive cancer. Silver lining? It is brain cancer, which means it is isolated to the brain and didn't originate from another source. Still, it is a high-grade, aggressive cancer that has to be treated right away.
I knew it. Somehow I knew it. I keep thinking about how I wish he could have just broken his neck. How it would be so much easier to deal with, it seems like such a more simple fix. Easier than cancer. Easier than facing what I have feared most. Easier than trying to be brave and happy when I really just want to wake up and everything will be back to normal.
So, taking it one step at a time, we had to wait again to hear from the oncologist that would be over radiation treatments. Fortunately, they called Thursday morning. Unfortunately, our first meeting/consultation won't be until he returns from vacation.
SOOO... until April 21st we are on hold. At least Josh has some time to heal from surgery and we have time to spend with the boys. There, I did it. I got it out.
Now seems like a good time to mention that we have been incredibly humbled and overwhelmed by the love and support of the angels that literally live among us. So many phone calls, kind gestures, prayers, acts of service... every time we turn around there is someone waiting to show us their support. Tender mercies. Answers to prayers. Those who are willing to "lift up the hands which hang down" (See D&C 81:5, one of my favorites) It is more than humbling to be on the receiving end of so much LOVE. Josh keeps reminding me that this is what people are like. This is their nature. People are good, and kind and loving and want to help where they can. How can we ever express our appreciation and gratitude to so much support? We know what we can do will never be enough. We can only pray that the tender mercies we have been shown will be there someday down the road for each one of the angels who surround us everyday. We pray that we can be the ones who "lift up the hands which hang down, and strengthen the feeble knees." In the meantime, thank you. Thank you for recognizing what a good man Josh is. Thank you for recognizing his testimony, his strength, loyalty, work ethic, faith and so much more.
Sunday, March 21, 2010
A melt-my-heart moment
Today I had a moment that completely melted my heart and made me realize what exactly is meant when we are told to become like little children: humble and teachable. I love my boys and the way they humble me and teach me.
We had stake conference today, and we were lucky enough to hear from Elder Chistopher B. Munday (can't find a pic) and Elder D. Todd Christofferson.
We wanted the boys to understand how special it was to hear from a member of the seventy and from an apostle. We explained to them the organization of the leadership of the Church and that Elder Christofferson worked closely with President Monson. They were anxious to see both of them and kept asking me to point hem out during conference.
At the beginning of his talk, Elder Christofferson said that he was happy to see so many children and youth and that he hoped he would have the opportunity to shake each of their hands. McKay picked up on the comment, and misunderstood. He looked at me and said, "I didn't get to shake his hand!" I told him that he was inviting the children to shake his hand AFTER conference, so he was anxious to get in line.
Kimball and McKay were so good and waited patiently for their turn and smiled and said a quick "hello" as they took their turn shaking both Elder Christofferson and Elder Munday's hands.
After we got in the car Kimball said to me, "Mom, guess what? I KNOW that Heavenly Father loves me." I told him that he was right and I was so happy that he knew that and that I hoped he would always remember it. Then he said:
"Well, I know because Heavenly Father can't shake my hand because he has to stay in heaven, so he sent an apostle to shake my hand!"
We had stake conference today, and we were lucky enough to hear from Elder Chistopher B. Munday (can't find a pic) and Elder D. Todd Christofferson.
At the beginning of his talk, Elder Christofferson said that he was happy to see so many children and youth and that he hoped he would have the opportunity to shake each of their hands. McKay picked up on the comment, and misunderstood. He looked at me and said, "I didn't get to shake his hand!" I told him that he was inviting the children to shake his hand AFTER conference, so he was anxious to get in line.
Kimball and McKay were so good and waited patiently for their turn and smiled and said a quick "hello" as they took their turn shaking both Elder Christofferson and Elder Munday's hands.
After we got in the car Kimball said to me, "Mom, guess what? I KNOW that Heavenly Father loves me." I told him that he was right and I was so happy that he knew that and that I hoped he would always remember it. Then he said:
"Well, I know because Heavenly Father can't shake my hand because he has to stay in heaven, so he sent an apostle to shake my hand!"
Thursday, March 18, 2010
Oh no!
I have worried about Benson and the imminent jealousy when the baby is born. Especially because one day I picked him up on my hip and he couldn't get his front leg situated around my belly. He told me, "Baby sister in the way!"
Well... today he was sitting next to me and laying his head on my belly. So here's how the conversation went:
Me: "Oh, what a nice brother. Are you giving sister lovies?"
Benson: "No, I not!"
Me: "Oh? I thought you liked sister."
Benson: "Nope! I don't."
Well... today he was sitting next to me and laying his head on my belly. So here's how the conversation went:
Me: "Oh, what a nice brother. Are you giving sister lovies?"
Benson: "No, I not!"
Me: "Oh? I thought you liked sister."
Benson: "Nope! I don't."
Saturday, March 13, 2010
A not-so-rant of a post
I got back from Women's Conference a couple of hours ago, and I thoroughly enjoyed it. The message was good, Hillary Weeks was AWESOME (BTW, Did anyone else find her candor and realism admirable? I LOVED and completely appreciated it), and I was in good company. It was just what I needed after an emotional day yesterday, and after a stressful week. I felt the message to be personal, but realized that it was relatable to a wide range of needs, circumstances and walks-of-life. The only down side was that it ended.
I actually got on to blog out some frustration, but then I thought about how great the conference was and how it was so good for me to hear. Now I feel like I am disregarding some of the peace and goodness that I felt if I just rant. So I guess that this will be enough for now.
Maybe I will just leave you with some funny things my boys said this morning:
McKay saw me walk out of my room dressed for the conference. A few minutes later he came into my bathroom and said, "Sooooo, did they change church to Saturday, or what?" I told him that I was just going to a conference and they were staying home with Dad. I reassured him church was still on Sunday. In the next few seconds he was running up the stairs and saying, "Don't put on your church clothes!"
Later, they were taking a bath and I repeatedly asked Kimball to wash his hair. Finally, I was frustrated and told Kimball that it makes me mad when he ignores me. He just looked at me and matter-of-factly said, "Actually, I wasn't ignoring you to make you angry. I was ignoring you because I want to play." And... what do you say to that? I just tried to not laugh.
I actually got on to blog out some frustration, but then I thought about how great the conference was and how it was so good for me to hear. Now I feel like I am disregarding some of the peace and goodness that I felt if I just rant. So I guess that this will be enough for now.
Maybe I will just leave you with some funny things my boys said this morning:
McKay saw me walk out of my room dressed for the conference. A few minutes later he came into my bathroom and said, "Sooooo, did they change church to Saturday, or what?" I told him that I was just going to a conference and they were staying home with Dad. I reassured him church was still on Sunday. In the next few seconds he was running up the stairs and saying, "Don't put on your church clothes!"
Later, they were taking a bath and I repeatedly asked Kimball to wash his hair. Finally, I was frustrated and told Kimball that it makes me mad when he ignores me. He just looked at me and matter-of-factly said, "Actually, I wasn't ignoring you to make you angry. I was ignoring you because I want to play." And... what do you say to that? I just tried to not laugh.
Tuesday, March 9, 2010
Sweet competition
Subscribe to:
Posts (Atom)