It's that time again, to try not to worry but to worry because of the scans. It's been 2 months since the last scans, which were thankfully the good results that we wanted to see. 2 months is a long time. What Jeannine and I are worried most about is that Jovee has been letting us know that her left leg, around the knee area, is "owie". She rarely, rarely complains. Plus this morning, at 3:30 am, she whimpered a lot in her sleep. First time that she's ever done that. She's pretty smart...we take her seriously but sometimes I think she's playing us with the "owie" on her leg but there's no way that she's playing us when she whimpers in her sleep at 3:30 am. I don't like it at all and it does concern me a lot. We have to make sure that at the scans and visits that the doctors exam it, have the scans focus on it. I hope it's nothing with the spread of the cancer in that area and that it's hurting her. I remember in Seattle when Austin was being managed by the pain meds to try to control his leukemia...his mom said that he whimpered a lot because of the pain. Just breaks my heart to think of the possibility that the cancer is hurting her. "It's just growing pains, it's just growing pains, it's just growing pains" is what I think to band-aid the cancer thoughts.
My diabetes numbers are way out of whack. Yeah, partly because of what I eat but stress definitely has something to do with it. I mean, how much stress could I really have? My A1C is at 14. Very, very bad number. That was from the labs last Thursday, January 31st. So I walked 3 miles yesterday. I have to watch my carb and sugar intake and exercise a lot.
Was listening to a really good song by Sara Evans, Never Alone:
May the angels protect you
Trouble neglect you
And heaven accept you
When it's time to go home
May you always have plenty
Your glass never empty
And know in your belly
You're never alone
May your tears come from laughing
You find friends worth having
As every year passes
They mean more than gold
May you win but stay humble
Smile more than grumble
And know when you stumble
You're never alone
Chorus:Never alone
Never alone
I'll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn't goodbye
My love will follow you stay with you
Baby you're never alone
Well I have to be honest
As much as I wanted
I'm not gonna promise that cold winds won't blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You're never alone
Just a really sweet, makes you feel good song. We've used a lot of music for "therapy".
Wednesday, February 6, 2008
Sunday, February 3, 2008
Update
Yes, it's been a while. Besides the kajillion feet of snow, which will probably take until the summer,to melt away, these are some of the happenings in the Lim home:
Our neighbor had their son in law come over to shovel our roof. Two grown hardworking men spent 4 and ahalf hours on the roof and said, "Don't tell anyone we did it for $100.00". It was a lot harder than theythought. It was worth every penny of that because there's so much snow on our roof. I was so afraid of itcollapsing and crushing the kids in the middle of the night. I'm a worry wart when it comes to that so, because I didn't have the time, it was worth every penny.
Brooke slipped on the kitchen floor, broke her left elbow. Jeannine had mopped the floor and somehow Brookeslipped and broke it. First person in the Lim family to break a limb.
Jeannine and I will be married for 10 years this July. Man, how could she have put up and tolerated me forthis long. Ten years!!!
I was a Cub Master for the 8-10 year olds at the church for less than a month, did my one pack meeting andnow am the ward mission leader. We have 2 really good Elders so I look forward to working with them.
Jeannine and I started guitar lessons. In hopes of jamm'in around the camp fires and bringing more musicinto our home, this is a little adventure that we're taking on together. Plus, it's a great opportunity tospend time together. Husbands and wives need that alone time, ya know.
October will be 2 years for my braces. Dr. Smith said 24-28 months. Hopefully I'll have a movie star smilewhen all this is done.
Jovee has her CT Scan this Thursday and MIBG Scan on Friday. She's been complaining more that her leg hurts. I hope it's just growing pains. She did have the nueroblastoma all over her body, including the lower half.So I hope that the cancer hasn't spread. The last tests were the beginning of December. It's been 2 months.We've been praying that the last remaining tumor on the left side will have shrunk or disappeared. Please, please shrink or be gone. She deserves to have it gone. She's so good. Does anyone deserve to have a lifethreatening illness? Of course not. I'll post pictures tomorrow. She's got a lot more hair, growing like crazy.
I haven't prayed on my knees for a while until yesterday. Usually I pray on my drive into Spokane. I have atleast 45 minutes of good pray/talk time. But I really needed some help so I dropped on my knees and pleaded forsome divine intervention. I received the answers to 2 of the things that I prayed for that same afternoon. Thank you.
Yesterday was the one year anniversary of the benefit fundraiser for Jovee and our family. If anyone doubts that there is a God and that miracles have ceased, come talk to me and I'll tell you all about that miraculous night.
Our neighbor had their son in law come over to shovel our roof. Two grown hardworking men spent 4 and ahalf hours on the roof and said, "Don't tell anyone we did it for $100.00". It was a lot harder than theythought. It was worth every penny of that because there's so much snow on our roof. I was so afraid of itcollapsing and crushing the kids in the middle of the night. I'm a worry wart when it comes to that so, because I didn't have the time, it was worth every penny.
Brooke slipped on the kitchen floor, broke her left elbow. Jeannine had mopped the floor and somehow Brookeslipped and broke it. First person in the Lim family to break a limb.
Jeannine and I will be married for 10 years this July. Man, how could she have put up and tolerated me forthis long. Ten years!!!
I was a Cub Master for the 8-10 year olds at the church for less than a month, did my one pack meeting andnow am the ward mission leader. We have 2 really good Elders so I look forward to working with them.
Jeannine and I started guitar lessons. In hopes of jamm'in around the camp fires and bringing more musicinto our home, this is a little adventure that we're taking on together. Plus, it's a great opportunity tospend time together. Husbands and wives need that alone time, ya know.
October will be 2 years for my braces. Dr. Smith said 24-28 months. Hopefully I'll have a movie star smilewhen all this is done.
Jovee has her CT Scan this Thursday and MIBG Scan on Friday. She's been complaining more that her leg hurts. I hope it's just growing pains. She did have the nueroblastoma all over her body, including the lower half.So I hope that the cancer hasn't spread. The last tests were the beginning of December. It's been 2 months.We've been praying that the last remaining tumor on the left side will have shrunk or disappeared. Please, please shrink or be gone. She deserves to have it gone. She's so good. Does anyone deserve to have a lifethreatening illness? Of course not. I'll post pictures tomorrow. She's got a lot more hair, growing like crazy.
I haven't prayed on my knees for a while until yesterday. Usually I pray on my drive into Spokane. I have atleast 45 minutes of good pray/talk time. But I really needed some help so I dropped on my knees and pleaded forsome divine intervention. I received the answers to 2 of the things that I prayed for that same afternoon. Thank you.
Yesterday was the one year anniversary of the benefit fundraiser for Jovee and our family. If anyone doubts that there is a God and that miracles have ceased, come talk to me and I'll tell you all about that miraculous night.
Wednesday, January 9, 2008
Snowy Days
Jovee had a hearing test yesterday, OAE (otoacousic emissions test). This test can tell us how her ears are functioning in response to certain types of sounds. Most cancer patients suffer some loss of hearing. She's all good and at the normal range. For having gone through what she's gone through and having her hearing be where it is at, she's actually doing really well.
It's snowed here just a ton. Tyson, Brooke, and Bennet did not have school today so they enjoyed the day off. As soon as they heard there was no school they were out playing in the snow first thing in the morning. Jovee woke up and was out there playing right along with them. The snow's pretty deep in our front yard so I wonder in her eyes how she views all this snow. I remember the blizzard of 1982 in Denver, being buried in all that white. This hasn't been a blizzard but there's a lot of shoveling I've been doing. Supposed to be more snow tomorrow again, another 2 to 3 inches.
I was feeling tired and yucky today on my way in to work. Got a burst of positive energy when I pulled over to help push a lady in a Toyota Prius that was stuck in the snow, going nowhere. I guy was trying to push her out by himself but was getting nowhere. I saw him while driving by, turned around, hopped out, tried pushing with him but to no avail. Another young man ran over and the 3 of us pushed her out of her rut. We all went our separate ways. The first guy didn't know the lady, just doing the good Samaritan thing; same with the 3rd guy. It was just nice to know of good people helping others, neighbors helping neighbors.
I got delayed 3 hours because I got a nasty flat in a snowy field in the boonies in Post Falls, Idaho. Was trying to install some signs with Andrew Mecham but spent a lot of time getting the tire fixed.
It's snowed here just a ton. Tyson, Brooke, and Bennet did not have school today so they enjoyed the day off. As soon as they heard there was no school they were out playing in the snow first thing in the morning. Jovee woke up and was out there playing right along with them. The snow's pretty deep in our front yard so I wonder in her eyes how she views all this snow. I remember the blizzard of 1982 in Denver, being buried in all that white. This hasn't been a blizzard but there's a lot of shoveling I've been doing. Supposed to be more snow tomorrow again, another 2 to 3 inches.
I was feeling tired and yucky today on my way in to work. Got a burst of positive energy when I pulled over to help push a lady in a Toyota Prius that was stuck in the snow, going nowhere. I guy was trying to push her out by himself but was getting nowhere. I saw him while driving by, turned around, hopped out, tried pushing with him but to no avail. Another young man ran over and the 3 of us pushed her out of her rut. We all went our separate ways. The first guy didn't know the lady, just doing the good Samaritan thing; same with the 3rd guy. It was just nice to know of good people helping others, neighbors helping neighbors.
I got delayed 3 hours because I got a nasty flat in a snowy field in the boonies in Post Falls, Idaho. Was trying to install some signs with Andrew Mecham but spent a lot of time getting the tire fixed.
Sunday, January 6, 2008
Eating
Jovee hasn't eaten anything all day. She usually doesn't eat anything at all. Good thing for her G-Tube and Pediasure. She goes through at least (2) 8 oz cans of Pediasure a night and about 3 or 4 cans throughout the day. Good thing her Pediasure can be used as a sole source of nutrition. The only foods that she'll consistently eat are popcorn, tortilla ships, nacho cheese, and beef. At least lately. It's really frustrating when we try to get her to try to eat just anything but she just doesn't.
Wednesday, January 2, 2008
Happy New Year!
Last Christmas Jovee had just got out of the hospital after her 3rd round of chemotherapy. She did not feel very good at all. We remember her sitting on the couch at Grandma’s house with all the family members around her. Even though thoughts of Christmas and presents were in the air, the sickly look on Jovee’s face and posture gave Jeannine and I and other family members a dim feeling, not knowing what lay ahead.
Christmas Eve was much more joyous because, compared to 2006, Jovee was doing and feeling much more lively. Plus she has lots of hair and wasn’t bald. Cancer bald. I watched her play with the kids and was overwhelmingly thankful for her. I just sat, watched her, and thought about some of the lessons that she’d taught me this past year of 2007:
Don't complain, be strong and courageous, believe in miracles, it's definitely OK to cry, work together to accomplish difficult tasks, be around family, friends, and people that are positive, be around people that really love you, love other people, have fun, music is powerful, smile and play lots...
The list goes on and on...
I went to bed about 9:30 pm on New Years Eve and didn't wake up until I heard Jeannine and the kids countdown to midnight. I got up just right then and they were at 5,4,3,2,1,0...I rushed over to the breaker box and the power to the entire house off right when they got to zero and it was dead silence for a couple of seconds. Then I yelled "HAPPY NEW YEAR" and then they all yelled. They didn't know what happened until my yell. It was funny (for me).
Jovee is still on Accutane, has another 3 months left. After the Accutane is done they're going to do another scan to see where she's at, where the cancer is at. If there is any remaining on the left side then I don't know what next. We've thought about doing a radiation therapy called proton therapy in Loma Linda, California, going to New York to Memorial Sloan Kettering to see what they have to offer since they are #1 in treating kids with neuroblastoma and seem to be more advanced than any other hospital, and last, very, very, very, very, very last option is to to surgery again to remove that last bit. The surgery would be equivalent in procedure, healing, pain, recovery as the big surgery on April 16th. Jeannine and I don't have the strength right now to go through something like that again. We could muster up the strength to do it if it's in the best interest of Jovee but it would take a lot of whatever to see her go through that again. She was so strong and awesome but I don't know.
Since we've been back from Seattle in mid August I don't think Sacred Heart has done a very good job in follow up on Jovee. We've had to initiate everything. There's been very, very poor communication from them. She's just another number. We've initiated her scans, labs, Accutane regiment, follow-up visits, everything. There hasn't been one, not one, single "Hey, how's Jovee doing?" or "Anything you guys need?" phone call. Really, not one. She's just another number to them.
I hope that the Accutane works and eliminates the remaining cancer. In the meantime, while she has the 14 day break, we're trying with what we know best, giving her a product that, upon hours and hours of research, we hope will fight the neuroblastoma cells. We have to be proactive and not just sit and wait to do what the doctors conventionally do. I believe that just isn't good enough. Knowing what I know and what I've learned, you have to "take matters into your own hands".
Happy New Year to everyone.
Christmas Eve was much more joyous because, compared to 2006, Jovee was doing and feeling much more lively. Plus she has lots of hair and wasn’t bald. Cancer bald. I watched her play with the kids and was overwhelmingly thankful for her. I just sat, watched her, and thought about some of the lessons that she’d taught me this past year of 2007:
Don't complain, be strong and courageous, believe in miracles, it's definitely OK to cry, work together to accomplish difficult tasks, be around family, friends, and people that are positive, be around people that really love you, love other people, have fun, music is powerful, smile and play lots...
The list goes on and on...
I went to bed about 9:30 pm on New Years Eve and didn't wake up until I heard Jeannine and the kids countdown to midnight. I got up just right then and they were at 5,4,3,2,1,0...I rushed over to the breaker box and the power to the entire house off right when they got to zero and it was dead silence for a couple of seconds. Then I yelled "HAPPY NEW YEAR" and then they all yelled. They didn't know what happened until my yell. It was funny (for me).
Jovee is still on Accutane, has another 3 months left. After the Accutane is done they're going to do another scan to see where she's at, where the cancer is at. If there is any remaining on the left side then I don't know what next. We've thought about doing a radiation therapy called proton therapy in Loma Linda, California, going to New York to Memorial Sloan Kettering to see what they have to offer since they are #1 in treating kids with neuroblastoma and seem to be more advanced than any other hospital, and last, very, very, very, very, very last option is to to surgery again to remove that last bit. The surgery would be equivalent in procedure, healing, pain, recovery as the big surgery on April 16th. Jeannine and I don't have the strength right now to go through something like that again. We could muster up the strength to do it if it's in the best interest of Jovee but it would take a lot of whatever to see her go through that again. She was so strong and awesome but I don't know.
Since we've been back from Seattle in mid August I don't think Sacred Heart has done a very good job in follow up on Jovee. We've had to initiate everything. There's been very, very poor communication from them. She's just another number. We've initiated her scans, labs, Accutane regiment, follow-up visits, everything. There hasn't been one, not one, single "Hey, how's Jovee doing?" or "Anything you guys need?" phone call. Really, not one. She's just another number to them.
I hope that the Accutane works and eliminates the remaining cancer. In the meantime, while she has the 14 day break, we're trying with what we know best, giving her a product that, upon hours and hours of research, we hope will fight the neuroblastoma cells. We have to be proactive and not just sit and wait to do what the doctors conventionally do. I believe that just isn't good enough. Knowing what I know and what I've learned, you have to "take matters into your own hands".
Happy New Year to everyone.
Thursday, December 6, 2007
PARTY!!!!!!!!!!!!!!!!
Here I sit in the resource room at the hospital, just got word from todays' test. We were supposed to call back tomorrow, Friday, but I couldn't wait. Another lesson learned about it's not what you know, it's who you know (and how nice you are, too).
Official wording from the MIBG Scan today that was done at 10:00 am, dictated and reported by the best doctor:
The previously seen activity in the epigastric region in the abdomen as to the areas of abnormal paraaortic at the T1 level ARE NO LONGER PRESENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The left paratracheal left subclavicular activity again seen no change compared to 11/06/07 study.
The left small tumor hasn't decreased but we'll take that over it growing any day.
Thank you, thank you, thank you, thank you, thank you for your thoughts, prayers, and support.
Hug someone you love today. And give them a big squeeze bear hug, not a weak, wimpy hug!
Big Day
Someone donated a bunch of home made caps for the kids at the hospital some time ago and when Jovee visited the hospital today for preparations for tomorrow's scan, they had saved one specifically for her. Jovee and another girl are known at the hospital as the princesses because they both always come dressed all dolled up. Jovee's pretty well known and I must say a favorite patient of the nurses. A little bit of favoritism but that's all right...So today is the big scan. It's this morning at 10 am. I'm going to bring the video camera to record the scan. They're pretty relaxed so recording the MiBG is OK. Hoping for the best, hoping for just bowel or just lymph nodes...please, please, please be just that.
Monday, December 3, 2007
Old age body
So it only took 2 hours to find out that I strained and most likely tore some of my intercostal muscles, the muscles that are found in between my ribs. Man, they hurt! Just some pain medicine and time to make the pain eventually go away. Our hot water heater is going out, has been working on and off so got to get that repaired. Had to put new tires on the Jeannine's van because they weren't working very well in the snow. There's always stuff going on, no rest for the wicked. Just a part of life. Man, how boring life would be if we didn't have opposition. I mean, how boring if I just got everything I wanted.
Bennet asked Brooke, "Brooke, am I your friend?" With all innocence and seriousness Brooke replied, "Who's I?".
Jovee hasn't been eating very much at all the past week, particularly the past couple of days. Good thing we got the G-Tube. I wish she would eat though. She's still maintaining her weight so that's good. If, when, it goes well with her scan we're going to ask to have the Hickman line be removed. That would be a big step towards the hope of recovery, not having the tubes hang out of her chest. She's so used to it. The Hickman line has just been a part of her. Whenever we flush her line, daily, she's learned to push the syringe and flush each line out. She likes doing that.
Bennet asked Brooke, "Brooke, am I your friend?" With all innocence and seriousness Brooke replied, "Who's I?".
Jovee hasn't been eating very much at all the past week, particularly the past couple of days. Good thing we got the G-Tube. I wish she would eat though. She's still maintaining her weight so that's good. If, when, it goes well with her scan we're going to ask to have the Hickman line be removed. That would be a big step towards the hope of recovery, not having the tubes hang out of her chest. She's so used to it. The Hickman line has just been a part of her. Whenever we flush her line, daily, she's learned to push the syringe and flush each line out. She likes doing that.
To Good Health
Man, I need to take care of my body a lot better. I have to get my chest checked out because last Wednesday night I started getting really sharp pains, seemed like somebody kicked me in the ribs and no body kicked me or even touched me. It's been hurting bad since last Wednesday night. Man, I'm going to be 33 in a week and feel like my body is falling apart. Good health should motivate me just to be in good health but taking care of my family and being around to take care of them should be a huge motivating factor.
Saturday, December 1, 2007
Happy December
Wow, it's December 1st. How time just goes by...It's 18 degrees this morning right now in Deer Park. Tyson and Bennet have their last basketball game this morning. They should be going to the exhibition game at the high school because their team, the Bears, are undefeated. They choose the 2 best teams to play at halftime at the high school boys varsity basketball game. They've had lots of fun. Tyson, Bennet, Mikal, Tyrel, and Samuel Palmer are all on the same team...quite the rowdy crowd. Hope they all grow up together and help each other out in life.
Jeannine, Brooke, and Jovee are going to the Disney on Ice Princess Wishes today. Girls afternoon out on the town. Should be fun for them.
Yesterday morning I decided to go in work a little bit later than usual. I've been working a lot this week, coming home late. We try to eat dinner together because it's good family time but work's been busy. So I took Tyson, Brooke, and Bennet to Rosauers before I dropped them off at school. We all got donuts, sausage links, and bacon and sat at the cafe inside of Rosauer's (a grocery store) and had a good little bonding moment. They all enjoyed it and so did I. If I'm not too packed for work I'd like to make it a "donuts with Dad" Friday. They all smiled big when I asked if they'd like to make that a tradition.
Wednesday evening I saw an old man on a bicycle get hit by a car. He was not hurt but his bicycle was thrashed and all of his belongings were all on top of him in the middle of the lane where he got hit. Four other people, including the man that hit him, and I got out to help him up. He was a transient, didn't have a particular place to go. We all asked if he needed to call anyone or if we could get him to where he was going but he had no where to go. It was a sad moment because he didn't have anywhere he could go to or anyone that he knew of that could come get him...he just mentioned since his bike is thrashed that he'd have to stay at a hotel. After the firefighters came and checked him out and all was well with him physically, I got in my van and drove away. I started immediately to cry...I don't know why...but I cried a lot. I think it was just thankful for having very good friends and family and having people that I could go to at any time to help me. I was thankful to be alive. When you get into a potential life ending situation or see a potential life ending situation it definitely makes you stop and count your many blessings.
Now that it is closer I'm starting to get nervous and anxious again for the results of Jovee's MIBG scan. The actual scan is on the 6th, with preparations on the 5th. So we'll hopefully have results on Friday the 7th. The waiting period....There is really no cure for neuroblastoma. If there was, she'd be cured after a year now. I have absolutely no control of the cancer, no control to spread it, no control to make it disappear. The doctors, medicine, and science have no control. So who's in control? I'm again begging, petitioning with fervent prayer that God, who is in control, grants the desires of my heart to make the cancer go away RIGHT NOW, to make the 2 bright spots that showed up last time be nothing and that the other little tumor continues to shrink. That's what I want and the only thing I want as an early Christmas present. Speaking of presents....today is a gift, that's why it is called the present. I liked that quote.
Happy December 1st!
Jeannine, Brooke, and Jovee are going to the Disney on Ice Princess Wishes today. Girls afternoon out on the town. Should be fun for them.
Yesterday morning I decided to go in work a little bit later than usual. I've been working a lot this week, coming home late. We try to eat dinner together because it's good family time but work's been busy. So I took Tyson, Brooke, and Bennet to Rosauers before I dropped them off at school. We all got donuts, sausage links, and bacon and sat at the cafe inside of Rosauer's (a grocery store) and had a good little bonding moment. They all enjoyed it and so did I. If I'm not too packed for work I'd like to make it a "donuts with Dad" Friday. They all smiled big when I asked if they'd like to make that a tradition.
Wednesday evening I saw an old man on a bicycle get hit by a car. He was not hurt but his bicycle was thrashed and all of his belongings were all on top of him in the middle of the lane where he got hit. Four other people, including the man that hit him, and I got out to help him up. He was a transient, didn't have a particular place to go. We all asked if he needed to call anyone or if we could get him to where he was going but he had no where to go. It was a sad moment because he didn't have anywhere he could go to or anyone that he knew of that could come get him...he just mentioned since his bike is thrashed that he'd have to stay at a hotel. After the firefighters came and checked him out and all was well with him physically, I got in my van and drove away. I started immediately to cry...I don't know why...but I cried a lot. I think it was just thankful for having very good friends and family and having people that I could go to at any time to help me. I was thankful to be alive. When you get into a potential life ending situation or see a potential life ending situation it definitely makes you stop and count your many blessings.
Now that it is closer I'm starting to get nervous and anxious again for the results of Jovee's MIBG scan. The actual scan is on the 6th, with preparations on the 5th. So we'll hopefully have results on Friday the 7th. The waiting period....There is really no cure for neuroblastoma. If there was, she'd be cured after a year now. I have absolutely no control of the cancer, no control to spread it, no control to make it disappear. The doctors, medicine, and science have no control. So who's in control? I'm again begging, petitioning with fervent prayer that God, who is in control, grants the desires of my heart to make the cancer go away RIGHT NOW, to make the 2 bright spots that showed up last time be nothing and that the other little tumor continues to shrink. That's what I want and the only thing I want as an early Christmas present. Speaking of presents....today is a gift, that's why it is called the present. I liked that quote.
Happy December 1st!
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