It's late and Joann and Tag are in bed. Something about my earlier post had my mind racing and I turned on the TV to see if I could find something to watch. And did I ever.
One of my favorite programs is a special on ESPN called E:60, where they highlight interesting sports stories. Often they are stories about tragedy and triumph, or beating the odds amidst seemingly insurmountable challenges. Tonight was no different. It was a story about a young man named Andre Lampkin, a young football running back who got a rare disease called bacterial meningitis that required him to have both hands and feet amputated. I strongly recommend this story. You can watch it here:
http://espn.go.com/video/clip?id=5414504
The point of this story to me was how Andre chose to react to such a terrible setback, and in doing so became a better man and an inspiration to those around him. And now to me.
Isn't this the point of it all? If you read any amount of scripture you quickly find that the time we spend on earth is no picnic. It's treacherous, difficult, and puts each of us through tests we feel we cannot possibly overcome. Job's test is only a type of the tests we all will be faced with and there's no escape. So, then, what really matters is how we choose to respond to these tests, trials, obstacles and setbacks.
I talk a big game on this blog because I hope that someday Tag will read it and better understand what we were going through with his birth and early life. But in reality this is the most difficult challenge I have ever personally had to face. How can such a cute little boy have cancer?! Then, on top of Tag's challenges, I also have my father dealing with cancer, a failed business and the corresponding economic challenges to bounce back from, all happening at the same time. No picnic indeed.
But I love what Andre said in his interview. He had told his mother that he wanted to commit suicide but didn't have the hands to do it. Then he said, "I got mad at them thoughts. I don't want to think like that. And I just keep praying, you know. I'm not used to being down so I'm not going to stay down."
I couldn't have said it better myself.
Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, He it is that doth go with thee; He will not fail thee, nor forsake thee.
-- Deuteronomy 31:6
Wednesday, July 28, 2010
Phone Tag (pun intended)
Well, what do I say? Tag is doing amazingly great. He is smiling and about to explode forward with crawling. He gets so frustrated to see something just out of reach but is not sure quite how to move forward... for a few more days. He has discovered how to rollover from back to front this week, has figured out how to make a Pfffffth sound with his lips, plays catch with a ball with me while sitting up and he returns the ball to me in the funniest way. I just have to get it on video.
Okay, okay, so what about the next steps? Can you stand it? Neither can we, frankly. We have exchanged a few messages with our oncologist but haven't spoken to her. The first message she left suggested we get up to Primary's to start chemotherapy. We were extremely frustrated with this as we still don't know what kind of cancer it even is! Let alone, recommended treatments, statistics, side effects, or alternatives.
Joann and I have been reading and studying up on infant cancers, chemotherapy, and other organic treatments. It's quite an interesting history for those of you who haven't read up on this topic. There are certain cancers where chemo has had a good effect. Leukemia, for example, was an infant death sentence 20 years ago and now it's a 95% success rate. However, the cancers where chemo has proven effective are only about 2% of all cancers. I was shocked to learn this. The rest is not impressive at all and the short and long term side effects are abysmal at best. It must be difficult to be an oncologist when your best strategy has such poor effect.
Tag's case is so unique there may not be many numbers to back up anyone's suggested treatment, but this remains to be seen or discussed. All we know is that they took the tumor out successfully and every test shows that whatever cancer may have been present has not spread anywhere else. Also, he's a perfectly normal little boy. Check that -- he's better than normal. He rarely cries, is growing and eating like a weed, and makes friends wherever he goes. We do not sense any crisis here.
Bottom line, we are interested in doing what's best for Tag and we are being very prayerful and thoughtful as we consider these questions, because they are ours to consider. Right now, all we have are questions. In fact, last night I attempted to write down my questions for our oncologist and just off the top of my head filled two pages!
As we consider these important questions, and the answers that will hopefully come, we are choosing to follow the lead of our son, who lives in the moment and finds things to smile and be happy about. In this case, there are many.
Okay, okay, so what about the next steps? Can you stand it? Neither can we, frankly. We have exchanged a few messages with our oncologist but haven't spoken to her. The first message she left suggested we get up to Primary's to start chemotherapy. We were extremely frustrated with this as we still don't know what kind of cancer it even is! Let alone, recommended treatments, statistics, side effects, or alternatives.
Joann and I have been reading and studying up on infant cancers, chemotherapy, and other organic treatments. It's quite an interesting history for those of you who haven't read up on this topic. There are certain cancers where chemo has had a good effect. Leukemia, for example, was an infant death sentence 20 years ago and now it's a 95% success rate. However, the cancers where chemo has proven effective are only about 2% of all cancers. I was shocked to learn this. The rest is not impressive at all and the short and long term side effects are abysmal at best. It must be difficult to be an oncologist when your best strategy has such poor effect.
Tag's case is so unique there may not be many numbers to back up anyone's suggested treatment, but this remains to be seen or discussed. All we know is that they took the tumor out successfully and every test shows that whatever cancer may have been present has not spread anywhere else. Also, he's a perfectly normal little boy. Check that -- he's better than normal. He rarely cries, is growing and eating like a weed, and makes friends wherever he goes. We do not sense any crisis here.
Bottom line, we are interested in doing what's best for Tag and we are being very prayerful and thoughtful as we consider these questions, because they are ours to consider. Right now, all we have are questions. In fact, last night I attempted to write down my questions for our oncologist and just off the top of my head filled two pages!
As we consider these important questions, and the answers that will hopefully come, we are choosing to follow the lead of our son, who lives in the moment and finds things to smile and be happy about. In this case, there are many.
Monday, July 19, 2010
Bone Marrow Clean
The bone marrow results are in and Tag is clear of any cancer spreading in his body. This is great news! Now, comes the debate from the experts as to what to do next. Typically, those in the medical field trained by the AMA say, "Cancer? Start the chemo!"
We have our own ideas, but remain open-minded to hear what the doctors have to say. We have been reading and talking and praying a lot, in order to make the best decision for the little guy. He remains completely normal. No, better than normal. He constantly laughs and brightens our day. His favorite thing to do is go outside and sit in a chair with me as I throw a ball to the family dog, Nala. Sometimes he laughs as Nala jumps up to catch the ball in mid air and he grunts with curiosity when Nala returns with a mouthful of ball.
Tag is sitting up on his own and he proudly leans completely forward, grabs a toy, and returns to the sitting position. It's impressive. His surgery scar is healing up nicely as well. Here's a photo the day after his surgery on June 14th:
Here it is today, July 19th:
Many of the folds have already tightened and the scar is closing nicely. I have been thinking a lot about this whole experience and have much to say, but not tonight. I'm tired. Good night, Tag. Looking forward to seeing your smiling face when I open my eyes tomorrow morning. This is my new favorite time of day.
We have our own ideas, but remain open-minded to hear what the doctors have to say. We have been reading and talking and praying a lot, in order to make the best decision for the little guy. He remains completely normal. No, better than normal. He constantly laughs and brightens our day. His favorite thing to do is go outside and sit in a chair with me as I throw a ball to the family dog, Nala. Sometimes he laughs as Nala jumps up to catch the ball in mid air and he grunts with curiosity when Nala returns with a mouthful of ball.
Tag is sitting up on his own and he proudly leans completely forward, grabs a toy, and returns to the sitting position. It's impressive. His surgery scar is healing up nicely as well. Here's a photo the day after his surgery on June 14th:
Here it is today, July 19th:
Many of the folds have already tightened and the scar is closing nicely. I have been thinking a lot about this whole experience and have much to say, but not tonight. I'm tired. Good night, Tag. Looking forward to seeing your smiling face when I open my eyes tomorrow morning. This is my new favorite time of day.
Hey Dad, why you sneakin' pictures of my scar?
Monday, July 12, 2010
Answers Bring More Questions
So many of our friends and family are supporting us. Even reading our story is a support, so thank you. Today, we've been asked so many questions. Here's an example from our friend Dani:
We were all hoping that if all the other tests came out negative that he wouldn't have to go through chemotherapy. But I guess he still does just even for the area that he had the cancerous cells-not understanding it all. I guess that the tests last week and today where to determine how much and what type of chemo? And then what? They will just test the head area again after the chemo or will they continue to test the other areas as well to see if it might still spread?
We were hoping the same exact thing! We just don't have answers to these and other questions yet. Thus, the maddening adventure we find ourselves in. This is not an adventure for the light-hearted, but then again, isn't that life?
We'll do our very best to communicate answers when we get them. There are so many questions surrounding Tag's unique case, even for the very best in the United States. Dr. Bruggers said that Tag's case is being looked at by the very best in the country and he is making everyone scratch their heads. As she told us this, she wryly smiled and said, "But isn't that what he's done since arriving?"
You said it, sister!
We were all hoping that if all the other tests came out negative that he wouldn't have to go through chemotherapy. But I guess he still does just even for the area that he had the cancerous cells-not understanding it all. I guess that the tests last week and today where to determine how much and what type of chemo? And then what? They will just test the head area again after the chemo or will they continue to test the other areas as well to see if it might still spread?
We were hoping the same exact thing! We just don't have answers to these and other questions yet. Thus, the maddening adventure we find ourselves in. This is not an adventure for the light-hearted, but then again, isn't that life?
We'll do our very best to communicate answers when we get them. There are so many questions surrounding Tag's unique case, even for the very best in the United States. Dr. Bruggers said that Tag's case is being looked at by the very best in the country and he is making everyone scratch their heads. As she told us this, she wryly smiled and said, "But isn't that what he's done since arriving?"
You said it, sister!
Gut Punch
Joann and I came up to Salt Lake last night and stayed at Uncle Ralph & Bonnie's so we could make it to Tag's early morning appointment at Primary's for his bone marrow biopsy. We've been here since 8:30 and they just took Tag in for the procedure. Joann and I are sitting in the hall waiting. Again.
Today's been a tough one for me. I'm very emotional. Frankly, I'm just sick and tired of seeing baby Tag get held down while he's starving, as a team of nurses prick his body with needles trying to find a place for the I.V. This morning I had to leave the room as he cried and I snuck into the bathroom and did some crying of my own. It's just not right that such a sweet little boy like this has cancer. How is this possible?
Our capable oncologist, Dr. Bruggers, came in and tried her best to bring us up to speed on Tag's diagnosis. It's definitely a malignant tumor but the jury is still out whether is a rhabdomyosarcoma (muscle related) with a nerve sheath differentiation or a nerve sheath tumor (neurofibrosarcoma) with muscle differentiation. The question is which is the most dominant. Depending on which is more dominant, the treatments will vary some.
Bottom line, Tag's going to enjoy getting the poison of chemotherapy before his first birthday. At least Dr. Bruggers is certain of that. It just makes me sick to my stomach to consider such things. It's just not right.
We were delayed in getting Tag into his procedure, so I tried to play with some toys on the bed to distract him from his hunger.
But this didn't last so I took him on a little walk in the garden outside the hospital. He kept looking up at me with a smile as if to comfort me that he was going to be all right. Boy, did I need that. My eyes well up even as I write this down. We went on a leaf hunt and he pulled some nice ones off the trees and attempted to put them into his hungry little mouth. I sat him down next to the fountain and he fell right asleep. This was much more peaceful than him screaming in the waiting room.
Sleep well son. We'll make it through this ... TOGETHER.
Today's been a tough one for me. I'm very emotional. Frankly, I'm just sick and tired of seeing baby Tag get held down while he's starving, as a team of nurses prick his body with needles trying to find a place for the I.V. This morning I had to leave the room as he cried and I snuck into the bathroom and did some crying of my own. It's just not right that such a sweet little boy like this has cancer. How is this possible?
Our capable oncologist, Dr. Bruggers, came in and tried her best to bring us up to speed on Tag's diagnosis. It's definitely a malignant tumor but the jury is still out whether is a rhabdomyosarcoma (muscle related) with a nerve sheath differentiation or a nerve sheath tumor (neurofibrosarcoma) with muscle differentiation. The question is which is the most dominant. Depending on which is more dominant, the treatments will vary some.
Bottom line, Tag's going to enjoy getting the poison of chemotherapy before his first birthday. At least Dr. Bruggers is certain of that. It just makes me sick to my stomach to consider such things. It's just not right.
We were delayed in getting Tag into his procedure, so I tried to play with some toys on the bed to distract him from his hunger.
But this didn't last so I took him on a little walk in the garden outside the hospital. He kept looking up at me with a smile as if to comfort me that he was going to be all right. Boy, did I need that. My eyes well up even as I write this down. We went on a leaf hunt and he pulled some nice ones off the trees and attempted to put them into his hungry little mouth. I sat him down next to the fountain and he fell right asleep. This was much more peaceful than him screaming in the waiting room.
Sleep well son. We'll make it through this ... TOGETHER.
Thursday, July 8, 2010
3 Up, 3 Down
It's 2 PM at Primary's. Tag's in recovery from his bone scan and he's feeding and sleeping in Joann's arms. Lucky boy.
Here's his first view of seeing his Dad:
While waiting, I talked to our oncologist's assistant on the phone and shmoozed her into giving me the results from these first 3 tests. They are all good news. No sign of cancer in his brain, lungs, lymph nodes, or bones. The bone marrow test is not until Monday, but we are thrilled to learn that he had passed his first three tests and the cancer has not spread to anywhere else. Note: The assistant said she's not the doctor, and normally doesn't give the results over the phone, but she loves Tag and wanted to give us the good news heading into the weekend.
Woohoo!
Here's his first view of seeing his Dad:
While waiting, I talked to our oncologist's assistant on the phone and shmoozed her into giving me the results from these first 3 tests. They are all good news. No sign of cancer in his brain, lungs, lymph nodes, or bones. The bone marrow test is not until Monday, but we are thrilled to learn that he had passed his first three tests and the cancer has not spread to anywhere else. Note: The assistant said she's not the doctor, and normally doesn't give the results over the phone, but she loves Tag and wanted to give us the good news heading into the weekend.
Woohoo!
Suspended Over Pits Of Snakes
Not sure why I titled this post the way I did. It seemed fitting though, for Tag, Joann and I as we continue this adventure together. It would be much more safe to be on the sidelines, or in the movie theater, watching this story unfold, but I have to say I love being here with Tag in the middle of the fight.
Joann brought Tag home late in the afternoon yesterday after his first two tests. I rushed home to see him and Grandpa Charky took a snapshot of us.
Tag was a little groggy and the the green wrap on his hand/wrist was to keep the IV in so they wouldn't have to poke him again today. But, he was mostly himself last night making us all laugh and eating like a horse. He weighed in at 15 pounds and he is really starting to look bigger.
Joann and "Momsie" (Tag's grandma, Marina Spence), performed a few IV flushes before bedtime. Then, it was lights out for the groggy little man.
We are back at Primary's today for a bone scan. They shoot a liquid into his IV that runs through his veins and into his bones. Then they take a picture to see if any of the cancer has done the same. We should have results from these tests tomorrow.
Joann brought Tag home late in the afternoon yesterday after his first two tests. I rushed home to see him and Grandpa Charky took a snapshot of us.
Joann and "Momsie" (Tag's grandma, Marina Spence), performed a few IV flushes before bedtime. Then, it was lights out for the groggy little man.
Wednesday, July 7, 2010
Tuesday, July 6, 2010
Testing Week Begins
It's Tuesday morning, and I'm supposed to be working. I've got a lot to do. But I have to admit that mostly all my mind can think about is the upcoming week for Tag. Last night I had an entrepreneur friend call me and she asked, "Okay so I read your last blog post about 5 times wondering how I would be feeling if I had the same news you just received. I'm pretty sure I would be freaking out, nervous, and angry. HOW are you doing?"
I told her that mostly I think I'm calm and emotionally stable. It's been an interesting ride with Tag thus far and I've learned that when things are out of my control it makes no sense trying to control them or even worry about them -- because they are out of my control.
As I think about this, I have to give credit to Tag for this insight. He is such a happy little soul. When they bring him into surgery or stick his leg with a needle, he grimaces for a moment but then calms himself and surprisingly smiles, inspiring even the nursing staff. Sure, he doesn't know the possible future challenges he may face, even with the upcoming week's tests, but isn't this the lesson? He lives completely in the moment, not spending one minute worrying about the future challenges.
What is it about growing up that causes us to lose heart and worry about possible outcomes or challenges? This seems such a great waste of potential positive energy. One of my favorite authors, John Eldridge, wrote:
"We use a phrase to try to console ourselves after what we think is an irrecoverable loss: "All good things come to an end." I hate that phrase. It's a lie. Even our troubles and our heartbreaks tell us something about our true destiny. The tragedies that strike us to the core and elicit the cry, "This isn't the way it was supposed to be!" are also telling the truth-it isn't the way it was supposed to be... We abandon the most important journey of our lives when we abandon desire. We leave our hearts by the side of the road and head off in the direction of fitting in, getting by, being productive, what have you. Whatever we might gain- money, position, the approval of others, or just absence of the discontent itself-it's not worth it. "What good will it be for a man if he gains the whole world, yet forfeits his soul?" (Matt. 16:26)."
I love this quote. And I love Tag for reminding me to be in the present more often. It's such a better way to live.
We bring Tag to the hospital tomorrow for his first two tests, and another on Monday. Here's the schedule:
July 7th - sedate at 12:30 - MRI/CT Scan at 1:30 (Riverton Hospital)
July 8th - Bone scan injection 10:00 AM - sedate 11:00 - bone scan 12:00
July 12th - Clinic 8:30 AM Bone marrow/BX in RTU 10:00 (sorry for all the acronyms. This is how hospitals communicate)...
We pray that his cancer remains localized and hasn't spread. But until I know the answers, I choose to laugh with my little boy.
I told her that mostly I think I'm calm and emotionally stable. It's been an interesting ride with Tag thus far and I've learned that when things are out of my control it makes no sense trying to control them or even worry about them -- because they are out of my control.
As I think about this, I have to give credit to Tag for this insight. He is such a happy little soul. When they bring him into surgery or stick his leg with a needle, he grimaces for a moment but then calms himself and surprisingly smiles, inspiring even the nursing staff. Sure, he doesn't know the possible future challenges he may face, even with the upcoming week's tests, but isn't this the lesson? He lives completely in the moment, not spending one minute worrying about the future challenges.
What is it about growing up that causes us to lose heart and worry about possible outcomes or challenges? This seems such a great waste of potential positive energy. One of my favorite authors, John Eldridge, wrote:
"We use a phrase to try to console ourselves after what we think is an irrecoverable loss: "All good things come to an end." I hate that phrase. It's a lie. Even our troubles and our heartbreaks tell us something about our true destiny. The tragedies that strike us to the core and elicit the cry, "This isn't the way it was supposed to be!" are also telling the truth-it isn't the way it was supposed to be... We abandon the most important journey of our lives when we abandon desire. We leave our hearts by the side of the road and head off in the direction of fitting in, getting by, being productive, what have you. Whatever we might gain- money, position, the approval of others, or just absence of the discontent itself-it's not worth it. "What good will it be for a man if he gains the whole world, yet forfeits his soul?" (Matt. 16:26)."
I love this quote. And I love Tag for reminding me to be in the present more often. It's such a better way to live.
Dad and Grandpa Brinton pose while
Tag looks at a bug on the ground.
We bring Tag to the hospital tomorrow for his first two tests, and another on Monday. Here's the schedule:
July 7th - sedate at 12:30 - MRI/CT Scan at 1:30 (Riverton Hospital)
July 8th - Bone scan injection 10:00 AM - sedate 11:00 - bone scan 12:00
July 12th - Clinic 8:30 AM Bone marrow/BX in RTU 10:00 (sorry for all the acronyms. This is how hospitals communicate)...
We pray that his cancer remains localized and hasn't spread. But until I know the answers, I choose to laugh with my little boy.
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