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.

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.

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.

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.

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.

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.

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!

Jovee and Tyson

Tyson said to Jeannine out of the blue while they were talking in our kitchen, "Mom, if I could, I would take a knife, cut out Jovee's tumor, and then put it inside of me so that I could go through it all for her." It was a proud moment for me when Jeannine told me what he said. All three of them have taken really good care of Jovee and they love her a ton.

Official wording from report

CT Scan of soft tissue neck:
Compared to 9/5/07
Soft tissue density in the left superior mediastinum. Currently measures 14x9 mm. Stable appearance.

CT Scan chest/abdomen/pelvis
Compared to9/5/07
Chest:No new soft tissue abnormalities are identified.
Abdomen/pelvis: Stable. No evidence for metastatic disease. Stable examination of the chest, abdomen, and pelvis. There are no new abnormalities identified.

Bone marrow aspiration: No atypical cells to indicate metastatic disease are identified. Blasts are not increased.

MIBG Study:
The previously noted region of increased MIBG metabolism in the left paratracheal region is again identified, although decreased in intensity. THERE ARE TWO NEW REGIONS OF INCREASED MIBG METABOLISM IN THE PARA-AORTIC REGION, at approximately the T10 level. Uptake elsewhere is satisfactory. These likely represent para-aortic nodes; location within the adrenal glands is considered less likely.

Didn't really tell us much as far as the 2 new regions. Hopefully they are para-aortic nodes or guts or bowels.