The last two days have been the most difficult. Around 4:00 yesterday Marc became unresponsive. We had a few sweet moments just before that with our pastor, Alan. We finished praying and exchanged a few brief words. Since then he has been silent, struggling to take his next breath, and anxious. This has been a difficult transition for all of us. We are told that he is in his last hours, but we all know Marc's strength and determination -- he will leave us when he is ready and not a minute sooner. He continues to amaze us.
We are doing as well as we can. The kids stayed home today and we were comforted by the presence of family, friends, and wonderful hospice workers. We have our stressed, exhausted, and frightened moments; however, we also enjoy sweet moments together as family. We remember, visit, share our hearts.....and, yes.....laugh. God is good and He is present here with us.
We are all tired and I need to be present for Marc and the kids. This site will be silent from now until Marc goes home to be with his Heavenly Father. We would be grateful for your continued prayers as we face this hard task. I don't think any of us is prepared for what is to come.
With love and gratitude.....
Wednesday, September 29, 2010
Sunday, September 26, 2010
Battle Weary
I don't have much to report and I want to keep it brief tonight. Marc is holding his own. He seems to be tolerating the TPN pretty well; however, we have faced a host of other issues since we have been home. His breathing is becoming more difficult and he has a hard time catching his breath. He is more awake and alert during the day, but his strength is gone from his muscles. He can no longer walk and has a difficult time making it to the wheelchair. He is exhausted and winded if he moves too much. He fell a couple of times trying to get out of bed in the middle of the night. I'm so worried he is going to injure himself. The gastric tube we have been battling for weeks is working much better, though. I'm relieved that something is better!
We would be grateful for your prayers. All of us are battle weary. Marc is tired of being sick and hates the monotony of being in bed 24/7. He feels trapped. The kids are doing their best to be good sports as all of their interests and needs take second place to Dad's. They are very gracious about it, but it's hard to be patient all the time. I am overwhelmed.....still. There are so many needs and only one very human me. Can't say I've been in total control of the emotions this week. With being tired comes frustration and sadness...and sometimes hysterics....yikes. The good news is that I did ask for help. Hospice will be coming in to do more consistent care and respite care this week so that I can have a break. I am looking forward to pulling myself together.
Thanks for the continued care and support.
With love and gratitude....
We would be grateful for your prayers. All of us are battle weary. Marc is tired of being sick and hates the monotony of being in bed 24/7. He feels trapped. The kids are doing their best to be good sports as all of their interests and needs take second place to Dad's. They are very gracious about it, but it's hard to be patient all the time. I am overwhelmed.....still. There are so many needs and only one very human me. Can't say I've been in total control of the emotions this week. With being tired comes frustration and sadness...and sometimes hysterics....yikes. The good news is that I did ask for help. Hospice will be coming in to do more consistent care and respite care this week so that I can have a break. I am looking forward to pulling myself together.
Thanks for the continued care and support.
With love and gratitude....
Wednesday, September 22, 2010
Heading Home!
Thank you all for your continued prayers and support. I am happy to report that, so far, TPN has been a success. He is metabolizing it well and is already feeling the benefits of the hydration and nutrition after just two infusions. He is stable enough to go home today. We are encouraged by what this means for his comfort and quality of life as we face the days ahead.
The issues surrounding his gastric tube appear to be a bit better. The doctors determined that going in and trying to make any adjustments would prove too risky. While the system is not perfect, we have been able to keep it working with more flushing and more frequent draining. Not ideal, but it works.
Thanks to everyone that has helped us this week. Juggling the kids' schedules, hospital visits, and Marc's needs, has taken a lot of help. We are grateful for everyone that continues to put their lives on hold to help us. It's very humbling. We are grateful, too, to everyone that made the trip up the hill to visit us. It really brings us comfort and cheers us up to see familiar faces in this place. Thank you!
With love and gratitude....
The issues surrounding his gastric tube appear to be a bit better. The doctors determined that going in and trying to make any adjustments would prove too risky. While the system is not perfect, we have been able to keep it working with more flushing and more frequent draining. Not ideal, but it works.
Thanks to everyone that has helped us this week. Juggling the kids' schedules, hospital visits, and Marc's needs, has taken a lot of help. We are grateful for everyone that continues to put their lives on hold to help us. It's very humbling. We are grateful, too, to everyone that made the trip up the hill to visit us. It really brings us comfort and cheers us up to see familiar faces in this place. Thank you!
With love and gratitude....
Monday, September 20, 2010
Still Waiting...
It's Monday and we are still up at OHSU. Marc's potassium finally stabilized and he will be starting TPN tonight. It has taken four days to get to this point. Along with the frustration with the potassium, he has been battling a great deal of pain in his abdomen. His gastric tube is not working efficiently and the pressure of fluid and gas in his stomach causes tremendous pain. We are still trying to understand the cause and find a solution to these problems.
We are hoping all goes smoothly overnight as the TPN is introduced. Getting to the point that he can actually take the treatment has been quite a journey. Now that we have gotten to this point, his body actually has to be able to tolerate it. There is concern that his metabolism won't be able to cope. We pray that he will handle the treatment well without any further complications. If all goes well we will be home on Wednesday. We shall see....
Thank you for the continued prayers and support.
With love and gratitude....
We are hoping all goes smoothly overnight as the TPN is introduced. Getting to the point that he can actually take the treatment has been quite a journey. Now that we have gotten to this point, his body actually has to be able to tolerate it. There is concern that his metabolism won't be able to cope. We pray that he will handle the treatment well without any further complications. If all goes well we will be home on Wednesday. We shall see....
Thank you for the continued prayers and support.
With love and gratitude....
Thursday, September 16, 2010
Locusts, Lice, Flies?
I'm sure the title of this post sparked your curiosity. I'll get to the punchline in a minute. First, just to update everyone, Marc was finally admitted to the hospital today around noon. Along with trying to start the nutritional therapy (TPN), they will be assessing his gastric tube and picc line. Both are not working as well as they should and need some maintenance.
They have done an x-ray to determine if his picc line is still in a good position to accommodate the TPN fluids. Haven't heard the results yet. He did have his labs done right away and those results had everyone in an uproar. Apparently his potassium is at 1.4 -- terribly low and makes it impossible to give him the TPN without causing major heart problems. Right now he is receiving a potassium i.v. and will have his levels tested again in the morning. Hopefully then he will be able to start taking the TPN.
Now, for the humorous....sort of. Yesterday I was frustrated with the number of urgent matters that were consuming my attention and energy -- Marc's impending move to the hospital and all the arrangements and paperwork necessary to make that happen, Julia's rash, and Sophia's burns. Seemed like one calamity after another plaguing my life. All of them issues that demanded my involvement -- I couldn't put any of it off and it was (is) overwhelming. I remarked yesterday to a couple of friends that the next thing to happen would be swarms of locusts descending on our home. That was me being sarcastic and dramatic. Ha. Well, imagine my amusement this morning as the kids and I were eating breakfast and a couple of hornets went buzzing by. Hmm. No need to be alarmed, right? Just get the fly swatter, yell a lot, and smoosh them into oblivion. Problem solved. Not exactly. Julia headed upstairs to get dressed and said there was another one in the stairwell. I killed that one and then asked her to go check the playroom. Several years ago we had a nest in our eaves and they would sneak in around the siding and come in through the vents or light fixtures in our bonus room over the garage. Marc had killed that nest and sealed the hole, but something about the whole scenario triggered an intuition that the same thing might be happening.
It wasn't a minute later and Julia was yelling down the stairs, "Mom, you have to see this!" As I stepped into the playroom I was met with that all too familiar buzzing. Bees, hundreds of them, clustered around the lights, hovering in the air, ping-ponging off the windows. "Where are they coming from?" I shrieked. The boys spotted their entrance right away. The nest was in the wall and they had chewed a hole through the sheetrock. THEY CHEWED A HOLE IN THE WALL! I hurried the kids downstairs and slammed the door. Next call was to the exterminator -- one more thing on my crazy list of urgent matters. Life had become one sick, ironic joke in a matter of minutes. I felt that hysterical anger rising again. Why this? Why now? Isn't one of the complicated things on my plate enough? Why more?
I put in my call to the exterminator and headed to town to drop the kids at school. I then had a nice long, quiet drive home to fume over the state of affairs in my life. I started thinking about the comment I had made yesterday about the locust. I wondered why God brought that image to mind in the first place. I started thinking about dumb old Pharoh and his stubbornness. His heart was hard and he refused to acknowledge God's power. As a result of his pride and obstinance he and his people suffered greatly at the hand of God. Funny how I always think about that story and how it relates to the human being -- Pharoh. I focus on his cruelty, stubbornness, manipulation, pride, his need for power, and ultimately his destruction. I then compare my life to Pharoh's and am always relieved. Well, at least I am not like him. How could he not see God's power? If plagues were raining down on me I wouldn't have been that stupid to dismiss God and not listen. Idiot. Then it struck me. Foolish me. The story isn't about Pharoh. It's about God, his power, and sovereignty. Each one of the plagues was miraculous in its own way. They were all natural phenomenon that could not be ignored or denied. The story is not just about God's people escaping tyranny and oppression, but in seeing God's wondrous power...right in front of their faces.
I think I have lost sight of Him in the last few days. I have been so consumed with the plagues in my life that I have not seen God right in front of my eyes. No, I don't think God is punishing me with skin lesions and plagues of bugs; however, I think he used the situation to remind me that He is there...all the time. Very powerful. Able to perform miracles. Able to remind me of his goodness. His protection. His presence....even if it means sending a swarm of bees to give me a much needed firm (and obvious) reminder. I don't look back on today and think that God has forsaken me and heaped more on my plate than I can handle. I look back on today and know that my focus is back on my Lord, not on my circumstances. Right where it should always be.
Thanks for the love and support this week. We covet your prayers.
With love and gratitude....
They have done an x-ray to determine if his picc line is still in a good position to accommodate the TPN fluids. Haven't heard the results yet. He did have his labs done right away and those results had everyone in an uproar. Apparently his potassium is at 1.4 -- terribly low and makes it impossible to give him the TPN without causing major heart problems. Right now he is receiving a potassium i.v. and will have his levels tested again in the morning. Hopefully then he will be able to start taking the TPN.
Now, for the humorous....sort of. Yesterday I was frustrated with the number of urgent matters that were consuming my attention and energy -- Marc's impending move to the hospital and all the arrangements and paperwork necessary to make that happen, Julia's rash, and Sophia's burns. Seemed like one calamity after another plaguing my life. All of them issues that demanded my involvement -- I couldn't put any of it off and it was (is) overwhelming. I remarked yesterday to a couple of friends that the next thing to happen would be swarms of locusts descending on our home. That was me being sarcastic and dramatic. Ha. Well, imagine my amusement this morning as the kids and I were eating breakfast and a couple of hornets went buzzing by. Hmm. No need to be alarmed, right? Just get the fly swatter, yell a lot, and smoosh them into oblivion. Problem solved. Not exactly. Julia headed upstairs to get dressed and said there was another one in the stairwell. I killed that one and then asked her to go check the playroom. Several years ago we had a nest in our eaves and they would sneak in around the siding and come in through the vents or light fixtures in our bonus room over the garage. Marc had killed that nest and sealed the hole, but something about the whole scenario triggered an intuition that the same thing might be happening.
It wasn't a minute later and Julia was yelling down the stairs, "Mom, you have to see this!" As I stepped into the playroom I was met with that all too familiar buzzing. Bees, hundreds of them, clustered around the lights, hovering in the air, ping-ponging off the windows. "Where are they coming from?" I shrieked. The boys spotted their entrance right away. The nest was in the wall and they had chewed a hole through the sheetrock. THEY CHEWED A HOLE IN THE WALL! I hurried the kids downstairs and slammed the door. Next call was to the exterminator -- one more thing on my crazy list of urgent matters. Life had become one sick, ironic joke in a matter of minutes. I felt that hysterical anger rising again. Why this? Why now? Isn't one of the complicated things on my plate enough? Why more?
I put in my call to the exterminator and headed to town to drop the kids at school. I then had a nice long, quiet drive home to fume over the state of affairs in my life. I started thinking about the comment I had made yesterday about the locust. I wondered why God brought that image to mind in the first place. I started thinking about dumb old Pharoh and his stubbornness. His heart was hard and he refused to acknowledge God's power. As a result of his pride and obstinance he and his people suffered greatly at the hand of God. Funny how I always think about that story and how it relates to the human being -- Pharoh. I focus on his cruelty, stubbornness, manipulation, pride, his need for power, and ultimately his destruction. I then compare my life to Pharoh's and am always relieved. Well, at least I am not like him. How could he not see God's power? If plagues were raining down on me I wouldn't have been that stupid to dismiss God and not listen. Idiot. Then it struck me. Foolish me. The story isn't about Pharoh. It's about God, his power, and sovereignty. Each one of the plagues was miraculous in its own way. They were all natural phenomenon that could not be ignored or denied. The story is not just about God's people escaping tyranny and oppression, but in seeing God's wondrous power...right in front of their faces.
I think I have lost sight of Him in the last few days. I have been so consumed with the plagues in my life that I have not seen God right in front of my eyes. No, I don't think God is punishing me with skin lesions and plagues of bugs; however, I think he used the situation to remind me that He is there...all the time. Very powerful. Able to perform miracles. Able to remind me of his goodness. His protection. His presence....even if it means sending a swarm of bees to give me a much needed firm (and obvious) reminder. I don't look back on today and think that God has forsaken me and heaped more on my plate than I can handle. I look back on today and know that my focus is back on my Lord, not on my circumstances. Right where it should always be.
Thanks for the love and support this week. We covet your prayers.
With love and gratitude....
Wednesday, September 15, 2010
Another Change of Plan
Marc decided last week that he wanted to go back on nutritional therapy (TPN) to gain some weight and strength back. His weight has dropped to under 120 pounds and he has been really weak. His tumor has been quiet for a few weeks now and hasn't been causing him any pain. He went off all of his pain meds last week and has had no pain (nasty withdrawal symptoms, but no pain). He figures if he isn't going to be in pain he might as well have the energy to enjoy family and friends. So, after talking to hospice he has decided to give TPN a try again.
In the next day or so he will be going off of hospice to be admitted back into the care of his doctors at OHSU. He will spend the better part of this week at the hospital while they monitor his reaction to the therapy. The plan is that he will be admitted tomorrow, but beds on the oncology floor are full so it may not happen until Friday. We are on standby. I should know by tomorrow morning if we are to report to the hospital or not.
After he is released from the hospital, he will be put back on hospice and will return home. In the meantime, there are a ton of prayer requests. First, that this would be a success for Marc. Often times introducing this treatment at this stage can have devastating effects (congestive heart failure, liver failure, etc.). We are hoping this buys him a couple of weeks. He is determined not to pass away in September. He doesn't want to die in a month when there are family birthdays. This is his goal.
Please pray for the kids. This is the first week of school and it will make the week and weekend hectic for everyone. Ironically, this is exactly how the last week of school ended....Dad in the hospital. Not a fun time. Lastly, please pray for me. I am way, way, way overwhelmed. I feel like Gumby being stretched a million different pivotal directions. I am struggling with being there for Marc and with being there for the kids as they start back to school. I'm as tired as I have ever been. The weariness in combination with being pulled in different directions has me really anxious. I long for sleep, a manageable schedule, and peace in my heart. All are elusive right now.
Last, please pray for my girls. Julia has been battling a nasty case of molluscum -- a viral skin condition -- for several months. It has really flared up in the last couple of days and is causing her a great deal of discomfort. It itches and hurts, making it difficult for her to function during the day and sleep at night. She is miserable. I do have an appointment with a specialist at OHSU, but it's next Thursday. Please pray that she will be able to muddle through until then. Also, please pray for Sophia. She decided to see if I was really telling the truth by warning her not to touch the hot stove top. I left the room after boiling water for tea and she couldn't resist touching the red hot element. She burned her fingertips quite badly. Argh. Not a pretty sight.
Despite how crazy and overwhelming life seems right now, I am grateful and still feel blessed. I want to say thanks to my parents for helping with Marc and Sophia this week so that I could run the kids to and from school. A big thanks to Amy for helping me with Julia's skin rash. She was able to direct me to the specialist that deals with this crud (and share in my frustration). Many thanks to Glenn, Burton, Ed, and Dad, for cutting, splitting, and delivering, a big cord of wood today. That was work the kids and I were dreading! When we are snug and warm this winter we will remember those four sweet guys fondly! Thank you! Thank you! Lastly, thank you everyone that keeps encouraging us with emails, texts, and phone calls. It warms my heart the number of times folks stop what they are doing to tell us how much they care.
With love and gratitude..
In the next day or so he will be going off of hospice to be admitted back into the care of his doctors at OHSU. He will spend the better part of this week at the hospital while they monitor his reaction to the therapy. The plan is that he will be admitted tomorrow, but beds on the oncology floor are full so it may not happen until Friday. We are on standby. I should know by tomorrow morning if we are to report to the hospital or not.
After he is released from the hospital, he will be put back on hospice and will return home. In the meantime, there are a ton of prayer requests. First, that this would be a success for Marc. Often times introducing this treatment at this stage can have devastating effects (congestive heart failure, liver failure, etc.). We are hoping this buys him a couple of weeks. He is determined not to pass away in September. He doesn't want to die in a month when there are family birthdays. This is his goal.
Please pray for the kids. This is the first week of school and it will make the week and weekend hectic for everyone. Ironically, this is exactly how the last week of school ended....Dad in the hospital. Not a fun time. Lastly, please pray for me. I am way, way, way overwhelmed. I feel like Gumby being stretched a million different pivotal directions. I am struggling with being there for Marc and with being there for the kids as they start back to school. I'm as tired as I have ever been. The weariness in combination with being pulled in different directions has me really anxious. I long for sleep, a manageable schedule, and peace in my heart. All are elusive right now.
Last, please pray for my girls. Julia has been battling a nasty case of molluscum -- a viral skin condition -- for several months. It has really flared up in the last couple of days and is causing her a great deal of discomfort. It itches and hurts, making it difficult for her to function during the day and sleep at night. She is miserable. I do have an appointment with a specialist at OHSU, but it's next Thursday. Please pray that she will be able to muddle through until then. Also, please pray for Sophia. She decided to see if I was really telling the truth by warning her not to touch the hot stove top. I left the room after boiling water for tea and she couldn't resist touching the red hot element. She burned her fingertips quite badly. Argh. Not a pretty sight.
Despite how crazy and overwhelming life seems right now, I am grateful and still feel blessed. I want to say thanks to my parents for helping with Marc and Sophia this week so that I could run the kids to and from school. A big thanks to Amy for helping me with Julia's skin rash. She was able to direct me to the specialist that deals with this crud (and share in my frustration). Many thanks to Glenn, Burton, Ed, and Dad, for cutting, splitting, and delivering, a big cord of wood today. That was work the kids and I were dreading! When we are snug and warm this winter we will remember those four sweet guys fondly! Thank you! Thank you! Lastly, thank you everyone that keeps encouraging us with emails, texts, and phone calls. It warms my heart the number of times folks stop what they are doing to tell us how much they care.
With love and gratitude..
Saturday, September 11, 2010
It Takes a Village to Throw a Party
Wednesday was Julia's birthday and we spent the day enjoying simple pleasures with family. It was a great day and she really had fun. However, in her mind, her true celebration was yesterday. She has been planning her birthday party for weeks. She wanted to have a sleepover with her girlfriends. Not just any sleepover -- a camping sleepover in the tent, with a campfire, smore's, the whole works.
I love making birthdays special so I spent time thinking through the details. The "whole works" was going to take a lot of just that. Work! With Marc declining as quickly as he has been I was just praying we would be able to pull off the Wednesday birthday. Friday remained tentative until the last couple of days. Well, prayers were answered. Marc was stable enough for me to be distracted with the party, the weather was dry, and all the guests could attend.
So, with the major hurdles overcome, it came down to the work. There was no way I could have pulled off this party for Julia without the help of a lot of family and friends. As it worked out, it was perfect! Julia had so much fun and will always have great memories of her 8th birthday.
My deepest thanks go out to:
I love making birthdays special so I spent time thinking through the details. The "whole works" was going to take a lot of just that. Work! With Marc declining as quickly as he has been I was just praying we would be able to pull off the Wednesday birthday. Friday remained tentative until the last couple of days. Well, prayers were answered. Marc was stable enough for me to be distracted with the party, the weather was dry, and all the guests could attend.
So, with the major hurdles overcome, it came down to the work. There was no way I could have pulled off this party for Julia without the help of a lot of family and friends. As it worked out, it was perfect! Julia had so much fun and will always have great memories of her 8th birthday.
My deepest thanks go out to:
- Melanie for doing all the food and craft shopping, helping during the party, and cleaning up my kitchen!
- My folks for taking Sophia for the night and to Jess for taking the boys.
- A HUGE thank you to my brother-in-law, Tim, for spending the night inside with Marc so that I could have the pleasure of freezing to death in the tent outside with six little girls on sugar overload.
- Cara, for being my partner in crime and freezing with me, hanging out with the kids all night, helping me clean up this morning, and being an overall amazing good sport.
- Kasie, for helping the kids with the games, organizing the craft, and helping clean up. She, too, was an amazing good sport.
- John for bringing out more sugar....Joe's donuts. Mmmmm!
- John and Dave for visiting with Marc and keeping him company. It means a lot to him.
- Karen, Erika, and Jennifer, for providing extra hands during the evening.
- And of course, the kids: Allison, Benjamin, Julia B., Noelle, Sarah, Savannah, and Wilson, for the gifts, giggles, and memories made on a very special 8th birthday. Thank you!
An aggressive game of balloon stomp!
Allison slightly disoriented during pin-the-tail on the donkey....
The whole crew, including our good sports -- Cara and Kasie -- getting set to do bag races....
And they're off!
My camp cake. Stayed up waaaaaay too late on Thursday
putting this thing together. Glad I did....Julia was delighted.
Can you hear the ear piercing squeals of laughter now?
More giggles...
Cara wisely waiting by the campfire for the girl chatter to stop before she hits the sack.
Did I mention she was a really good sport?!?
Thank you, again, everyone. The night was a great success!
With love and gratitude....
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