Journal History

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Monday, January 19, 2009 2:54 PM CST

Hello everyone. I don't know if anyone even checks in anymore. I am not the best at updating. I think that I am trying to move on and forget this part of our life even though often times it always sneaks up on me and I know I will never forget. Every little ache and pain makes me worry.

But today, I am grateful for more time, more time for a life without cancer. And I send out prayers and thoughts to someone who no longer has that time.

To a brave child who fought the fight for 9 long years.

http://caringbridge.org/fl/zacharyfinestone/

Don't take things for granted. Life is short and nothing is guaranteed. Tell the people you love that you love them and don't let your "someday" become never.

Take Care and God Bless,
Chuson

Tuesday, July 22, 2008 9:16 AM CDT

Hello out there! Jeffrey turned 12 years old a few days ago. It's amazing. It seems like just a few days ago he was five and then I blinked... LOL Seven years since we first started our cancer journey... Two and a half years off treatment... We are very blessed. He is so tall now. 5'-2"!!! Junior high in the fall.

He is also getting his tonsils taken out on August 1. Poor baby. So pray for a safe surgery.

Everything else is going well. He goes back to school in 4 weeks. We are just trying to make the most of the rest of the summer and enjoy our time together as a family.

Thanks for checking in.

Take Care & God Bless,
Chuson

Monday, March 24, 2008 9:41 AM CDT

Hello... I'm not sure how many people really check in anymore. We had our life after cancer appointment in February. It seems strange to think that it has been over two years being off treatment. Jeffrey is doing so well, and I almost hesitate to say so in fear of jinxing it all. Right before his appt he came down with strep throat twice. Of course my mind thought the worst, but was so relieved when it was just strep. Jeffrey is getting so tall and thriving. He is still a little fearful when it comes to doing things. I think that comes from going through what he did and being afraid of getting back out there. I can't believe it is already the end of March. Time is just flying by. Sixth grade is almost over and next year, Jeff will be in junior high. It's unbelievable. When we started this cancer journey, he was in kindergarten. It seems like all I did was blink and now he's almost 12. Baseball season starts tomorrow. He is on a select league this spring, and it's very competitive. I think he is very hard on himself, and gets discouraged when he doesn't do well... He gets so frustrated but then says he likes it and still wants to play. LOL I guess that is typical. We are enjoying the spring weather. It will get hot shortly (typical Texas weather). We are getting settled in to our new routines and adjusting to the new area. We've been here for about 6-7 months now. Jeffrey has done so well adjusting to a new school and making new friends. I am so proud of him. I hope you all had a lovely Easter.
I am so grateful for his health and how well he is doing. We are doing well and moving on. Sometimes I look back on this journal and it seems like another life, and for that I am so grateful. I hope that you are all doing well. Continue to pray for all the families going through this journey. Pray for continued remission.

Take Care & God Bless,
Chuson

Thursday, December 27, 2007 9:23 AM CST

Merry Christmas and Happy New Year!

May 2008 be healthy and happy for all of you.

We are grateful this year for continued remission and friends and family!

Love to all,
Chuson & Jeffrey

Monday, October 8, 2007 1:52 PM CDT

Hi! Sorry for the very, very long delay in updating. Things are going really well for us. Jeffrey is very busy with school and baseball. His last clinic appointment went well and his counts were great. He has an MRI on October 24th to check on the spot on his brain. He's having some problems with upset stomach all the time. We are working on that by adjusting diet and such.

6th grade is a challenge! He has a lot of homework. I don't remember having so much work when I was in the 6th grade.. or course that was a loooong time ago...! So maybe I just don't remember well enough. LOL We bought a house and moved and we are still trying to get situated. We are so grateful for Jeffrey's health and are praying for great results from the MRI.

I don't know how many people still check on us, but thank you so much for your continued thoughts. We are doing well and just trying to keep up with all of our daily activities!!!

Take Care and God Bless,
Chuson

Tuesday, April 10, 2007 2:37 PM CDT

Jeffrey's clinic appointment went well. His counts are good and we are cruising along. He goes back to clinic on June 5th for another checkup. It's nice to not have to go back for two months. Time is flying by and the end of the school year is approaching fast.

Take Care and God Bless,
Chuson

Friday, February 2, 2007 10:41 AM CST

Good news!

It's just bleeding in the brain. LOL
Who says JUST bleeding in the brain?

Seriously, we went to the neurologist and he did some testing. He looked Jeffrey over. I really liked him. His name was also Jeffery. Just spelled a little differently! He really feels that this spot is trauma to the brain due to his treatments. The bleeding was probably caused by the radiation and intrathecal chemo. The bleeding was not severe enough to cause any other problems, so it shouldn't cause any future problems either. He says of course, that what he thinks it is is not 100%, so, just to be safe he wants to do a follow-up MRI in 6 months. If at that time, it has grown, then of course, it is something else, but he really feels like it is not going to be.

So, we go back for the MRI on July 31st. I am really relieved. I know it's not a 100%, but still good news to me! We go to our regular clinic appointment on the 13th.

Jeffrey is also scheduled to see the orthodontist on the 20th. He is excited about that. His teeth are getting crowded, so hopefully, now that his port is out, we can start with spacers or something.

School is going well. He brought home all A's on his progress report. He loves basketball. He also joined the chess club and is really getting into that. He's getting pretty good at it!

It's pretty cold here in Texas. Something tells me that the groundhog here did not see his shadow today! There is no sunshine today...

I hope all is well with you.

Take Care,
Chuson

Monday, January 15, 2007 2:00 PM CST

As of right now, we are still unsure of what the "spot" is. It is 3 mm and in the occipital lobe? I have no idea if 3 mm is big or small in terms of his brain. 3 mm sounds small to me. His counts are okay - so there is nothing funny going on there.

They are sending us to see a pediatric neurologist. Our appointment is for the 29th. You would think that after 5 years of the wait and see game I would be used to it. I have not told Jeff anything is going on yet. They keep telling me that it could still be nothing.

The oncologist did say today that nothing indicates another CNS relapse. So that is a plus.

Chuson

Thursday, January 11, 2007 4:10 PM CST

I hope that your new year is starting off well...

Jeffrey went for an mri on Tuesday. A just in case kind of thing that the doctors said would probably come out clear. Well, it showed that there is a spot on the back of his brain. As far as what that means, we don't know. We are scheduled to go to the oncologist on Monday. So, please pray that it is nothing. We are really tired of it always being something.

Take Care & God Bless,
Chuson

Friday, December 22, 2006 10:19 AM CST

Spinal tap came back clear. Port removed on the 20th. All is well.

MERRY, MERRY, MERRY, MERRY CHRISTMAS!!!!!!

Be Blessed!!!!!!

Much Love,
Chuson & Jeffrey

Wednesday, November 22, 2006 9:56 AM CST

I know it has been forever since I last updated! Things have been really hectic around here. On the medical side, we are cruising along. Jeffrey's last couple clinic appointments went really well. He is due for his last (hopefully last) spinal tap on December 12. As long as those results are clear, we will schedule to have his port removed. Wow, I can't believe it. We are 11 months off treatment.

Other than that, Jeffrey is still playing the viola and winter basketball starts in a few weeks. Practices and then games in January. Jeffrey is really excited about it. We are really looking forward to life without a port and clinic visits only every other month! Yay! Please pray for continued remission forever. I feel like we are really fortunate. One year ago, our lives were so different. Now we seem to be headed into some kind of normalcy and we appreciate it so very much.

HAPPY THANKSGIVING!

Thanks for checking in.

Take Care & God Bless,
Chuson

Wednesday, September 20, 2006 4:08 PM CDT

Jeffrey went in yesterday for his diagnostic spinal tap. The dr said the fluid looked clear. They are sending to the lab for testing, but he didn't seem to thinik there was anything to be concerned about. Yay! We are very grateful and blessed that everything is going so well.

His next clinic appt is October 17th. In December they will do another spinal tap, hopefully his last. As long as all is well, we will go ahead and have his port taken out. Wow, I can't believe it. He is 9 months off treatment.

All is well here. Jeffrey is doing well in school and also with his viola. Fifth grade is pretty tough and he is having to study extra hard. I am proud of him for doing so well. I had a meeting with his teachers yesterday also and they all say he is so well behaved, hard working, and kind hearted. I am so proud of how well he has turned out especially with all that he has been through. These kids that go through this amaze me.

Please pray for remission forever. We are doing fine. Just taking it day by day, one step at a time.

Take Care & God Bless,
Chuson

Wednesday, August 9, 2006 3:59 PM CDT

Jeffrey had a clinic appointment today. It went well. His counts are good and he no longer has to take Bactrim. He also was given the go ahead to resume getting vaccinations. That he was not that crazy about! LOL

Jeffrey starts school on August 14th. He is going into the 5th grade! Wow. I am ready for the school year to start. I have heard 5th grade is going to be tough, but sometimes I think he gets a little stir crazy with all his free time.

We go back next month on the 12th for another spinal tap. Please pray that all goes well and we get another all clear! We are 8 months off treatment and loving it.

Hope your summer is going well. We are cruising along.

Take Care & God Bless,
Chuson

Monday, July 17, 2006 8:52 AM CDT

All of Jeffrey's testing came back clear. Yay! It is definitely summer here in Texas. High of 104 today. Although, from what I've heard, the whole country is in a heat wave. We go back to the doctor on August 9th. School starts back the 14th. I am ready for this summer to be over. My least favorite thing about Texas is the heat during the summer. The 2 weeks of spring and fall that we get are rather nice though. LOL

Jeffrey did well in basketball this past weekend. He scored twice which is pretty good. Troy is working really hard with the boys. It is difficult to get everyone there during summer ball since everyone goes on vacation. Only two more games and then the season will be over.

Jeffrey is going to do orchestra this school year, so we went this past weekend and rented his instrument. He chose the viola. He was really excited when he saw it. I am excited for him. It is fun to see him always wanting to try new things (tiring sometimes, but fun!).

Jeffrey will be ten years old in 2 days. Wow. Double digits. It's amazing to think about how far we have come. Five years ago, I couldn't even envision 10. Life is a funny thing sometimes. We are 6 months off treatment and cruising along, and yet I'm still afraid to relax, or maybe it's just that I don't know HOW to relax? Either way, we are all doing well. Trying to make it through the summer heat and preparing for the 5th grade. I hope that you are all doing well.

Take Care & God Bless,
Chuson

Friday, June 9, 2006 4:39 PM CDT

Jeffrey's spinal tap came back all clear! Yay! We go back on July 10th for another checkup of counts and also an echo to make sure the chemo did not do any permanent damage to his heart. We are so happy about the results. Things are going well and Jeffrey is getting so tall! Summer is definitely here, it is very hot today here in Texas.

Thanks so much for checking in. I hope all is well with you.

Take Care and God Bless,
Chuson

Tuesday, May 30, 2006 3:21 PM CDT

Jeffrey has officially completed the 4th grade! He did great this year. He made the all A Honor roll for the year and got certificates for Citizenship, Battle of The Books and a special award called the Veterans Award (or something like that), it goes to one boy and girl in each class for being an exemplerary student all year long. I am very proud of him. We had a nice weekend. I took him to see X-Men 3 on Saturday and on Monday, Over the Hedge. Both were pretty good we thought. He is attending church camp this week. He had a great time there yesterday and was excited to be going today. Things are going very well for us. He goes to the hospital on Monday the 5th for his 2nd spinal tap off treatment. I am nervous as always. He has been doing so well and seems to have no issues at all regarding health. We are blessed. Please pray for continued remission forever. Summer basketball starts this coming weekend. Other than that we are trying to stay cool in this 95+ degree heat here in Texas. Hope you are all enjoying your summer. I will update again next week after the tap.

Take Care & God Bless,
Chuson

Tuesday, May 9, 2006 4:46 PM CDT

Hello and thanks for checking in.
Yesterday was Jeffrey's clinic appointment. All is well! Yay! His counts came back fine and we are scheduled to go in for his 2nd off treatment spinal tap on June 5th. Please pray for continued remission. He is doing great and has gotten so tall! School is almost over and Jeffrey just finished up his science experiment. We did it on food batteries. We made a battery out of a potato and one out of a lemon and compared. It powered a little digital clock. Very cool. Jeffrey really had a great time working on it and he got a 100n it!

Summer is almost here. This year is flying by. Jeffrey will be 10 in July. Where has the time gone? We are as busy as ever.

Thanks for checking in and I will update again soon.

Take Care & God Bless,
Chuson

Tuesday, April 11, 2006 8:33 AM CDT

Jeffrey went for his monthly visit at the clinic yesterday. His counts came back perfect and we don't go back for another month. It is great and unnerving all at the same time. We go back to check counts again May 8.

Jeffrey is doing well in school. He has to do a science experiment and has chosen electricity as his topic. It should be interesting.

Easter is coming upon us. We are going to a special Easter Service on Saturday for the kids and the church is doing a carnival / egg hunt on the grounds. It should be fun. Let's all remember this weekend the sacrifice that Jesus made for us. Count your blessings, each and every one.

Take Care & God Bless,
Chuson

Monday, March 13, 2006 9:57 AM CST

Hello. Jeffrey had his first spinal tap off treatment on Thursday the 9th. Everything went really well. His counts are great and his spinal fluid looks clear. Thank God! I was really nervous going in, but am so relieved and happy to know that things are going smoothly. He goes back to clinic on April 10th.

Non-medically, things are going great. We finished up basketball. The boys had so much fun. They are going to try and meet monthly to practice and also do a summer league this year. I think that is a great idea. I've been taking Jeffrey to the driving range to practice golf. I think once the weather starts to get more consistent, we'll try to get out to an actual course again. Jeffrey is on spring break this week. Only a few more months of school left… This year has flown by…

I will be sure to update again later. Thanks for checking in. We are steadily going on...

Take Care & God Bless,
Chuson

Tuesday, February 14, 2006 10:59 AM CST

HAPPY VALENTINE'S DAY!!!!

Jeffrey went to clinic on the 9th of this month. All is going well. His counts came back fine. He is scheduled for his 3 month spinal tap on March 9. Please pray for continued remission.

Basketball season is almost over. They won their game this past weekend. It was a good game. Jeffrey is really enjoying playing. Now I have to work on trophies and organizing the team party for the boys. Always a lot of fun.

Jeffrey is doing well in school. All A's with the occasional B thrown in there. I am very proud of how well he is doing. Being off treatment is a definite adjustment, but a good one. Tomorrow he will go for his yearly neuropsych testing. I am curious to see if they find any differences since he has had his cranial radiation since the last time he was tested.

There really isn't that much new news! LOL We are at the moment medically uneventful which is most definitely a GOOD thing!!!

Take Care & God Bless,
Chuson

Monday, January 9, 2006 11:33 AM CST

Hello! Sorry I have not updated in so long. Things are cruising along here so far. Let's see, today, Jeffrey goes back for his one month clinic visit. I am a little nervous, but things seem to be going pretty well. He does have this weird dry skin/rash thing going on around his mouth, so I will show that to the doctor today. I know that some kids get what's called a methotrexate rash or something along those lines even after treatment?
We had a lovely Christmas. Jeffrey got an archery set from Santa. He loves that thing. I think it will be great until he accidentally shoots something / someone in the butt! LOL He claims he is like Susan from the Chronicles of Narnia.

Jeffrey started playing basketball. They had their first game this past Saturday. They did not win, but I thought they played pretty well. We were not as aggressive as the other team, but I think the potential for the team is great. They are a good group of boys. We are trying to adjust to life off treatment. It is a strange feeling… I don't think it has quite hit us yet. I am so grateful to be where we are at today. Two years ago, I couldn't imagine being here. Jeffrey got his report card on Friday. All A's! I am so proud of him. He tries so hard at everything that he does.

Things are going well here. I hope you all have a healthy, happy, and prosperous 2006!

Take Care & God Bless,
Chuson

Monday, December 5, 2005 1:46 PM CST

We are all done with treatment! We went to clinic on November 22, and Jeffrey got his last round of chemo (Vincristine and Cytoxan). For Jeffrey, it was bittersweet. He is glad to be done with the meds, but sad because he will miss the nurses and staff at the clinic. He got very ill right after the chemo, but seemed to feel better later that afternoon. We took him to Dave & Buster's to celebrate coming off of treatment and he had a very good time. I am a little nervous, but I think that is to be expected.

His bone marrow biopsy and spinal tap was this past Friday. They said his fluid looked clear, but that they would send all the stuff to the lab and get the final results this week. It has been a very long 3 ½+ years. Pray, pray, pray for remission forever.

Jeffrey's class Christmas play is the 13th. He is very excited about it. He has a solo singing part. His grades are good. Mostly A's, one B. He was disappointed about the B (overachiever that he is), but I told him that it was a very good report card. He is having a tough time with his memory and doing math is now a struggle. I think it is due to the radiation, but maybe I am being paranoid. The other day, he temporarily forgot when his birthday was! But then, I can't ever remember where anything is, so what is my excuse? LOL

All in all, I am very glad to move on into this uncharted territory in this journey of ours. Two years ago, I thought we'd never get here! We go into the clinic on the 12th to discuss after treatment plans. We are still looking at monthly blood checks, spinal tap every 3rd month, and leaving the port in for awhile.

He is going to be playing winter basketball. He is very excited. Last year was right after radiation and he had a little difficulty keeping up, but this year he is raring to go! Christmas is just around the corner. It is coming way too fast it seems! I have done zero shopping…

I hope you all have a wonderful Christmas…

Take Care and God Bless,
Chuson

Friday, November 18, 2005 10:50 AM CST

So, Jeffrey was unable to get chemo last Friday. His ANC had gone down to 383. Go figure. I guess the Cytoxan and Vincristine is just affecting him quite a bit. So, we are just going to skip that round, and this coming Tuesday, will still be his last chemo treatment. Yay. We are then scheduled to do a bone marrow biopsy and spinal tap on December 2. After that he will need to do his yearly neurological assessment to see how much the radiation has affected him. I am hoping that by the first of the year, we will get into the once a month routine, and not have all these extra visits to go to. They will leave his port in for at least 6 months, maybe more.

I am getting more and more nervous as it gets closer. There are a lot of what if's going on in my head, but I am so grateful for being at this point. Please, pray pray pray for remission FOREVER. I keep thinking, now we can get back to normal. But what is normal? Not the normal before cancer, but a new normal is what it will have to be. Life is so hard sometimes. I am ready for a little bit of easy! LOL

Hope you have a safe and happy Thanksgiving. Eat lots of turkey and hug your loved ones close.

Take Care & God Bless,
Chuson

Tuesday, November 15, 2005 10:21 AM CST

Only 2 more treatments to go! It hasn't actually sunk in yet I don't think. Jeffrey says he will miss the clinic. I honestly cannot say the same thing! Jeffrey will go in this afternoon for his next to the last round of Vincristine and Cytoxan. Then next week will be his last round. We will then do a bone marrow biopsy and spinal tap. Pray for those to come back clear. After that, we will go to clinic once a month, with a diagnostic spinal tap every 3rd month for the first year. They plan on leaving his port in for at least 6 months... maybe longer. I still have to consult with the doctors to finalize the game plan. I feel like we are going to be done, but not quite done. Does that make sense?

The holiday season is fast approaching.

How many shopping days until Christmas??????

Take Care & God Bless,
Chuson

Thursday, October 27, 2005 9:22 AM CDT

Two years ago today, we were told that Jeffrey had relapsed.

It has been a long two years.

Only 4 more weeks of treatment left!!!

God Bless you all.

Chuson

Wednesday, October 19, 2005 9:22 AM CDT

Wow, I know it has been a long time since my last update. Please know, that no news is definitely good news. Things are going well. Jeffrey is doing great and we are doing our weekly methotrexate shots in the leg right now. We are headed into our last 5 weeks of treatment and I definitely have mixed emotions about it. I am so excited to be done. Jeffrey, however, is sad because although he will NOT miss the medicine and the needle sticks, he WILL miss everyone at the clinic. It is amazing how attached he has gotten to that place. It is like a comfort to him. On another note, I am nervous about not having the safety net of treatment to get us through. Has anyone else gone through this? I have been counting down the days, and now I am scared (but still excited and wouldn't trade it for anything!!!!).

After almost 4 years, we are now going to have the opportunity to regain some sort of normalcy in our lives. What is normal anyways? Clinic only once a month instead of once a week. WOW. I might actually get in 40 hours a week at work starting in December. Jeffrey might actually get to go to a whole week of school with no interruptions!!! LOL

Jeffrey is still doing golf. We decided to not do fall baseball. He is really excited about the upcoming basketball season.

He made the A-Honor Roll for the first 6 weeks of school. I am so proud of him. He tries so hard and has been through so much.

I hope you are all doing well. I will update more later.

Take Care & God Bless,
Chuson

Thursday, September 1, 2005 4:35 PM CDT

Jeffrey is doing well in school. He seems to be enjoying the 4th grade. The only problems I see him having is in math. He is getting a little frustrated with that, but I told him we just have to practice that is all. He loves to read and finished his library book in one day this week.

We went to clinic on Tuesday for another round of Cytoxan and Vincristine. He did fine all the way through, but then got very sick at the end right before the de-accessed his port. The saline flush and heparin makes him gag. He says he can taste it. I felt really sorry for him, as he kept apologizing for getting sick. Nurse Stellina told him it was okay and that he was not the only that the heparin made sick. I will be so glad when we are done with all of this… And on that note, we were told at clinic that we only have 12 more weeks to go!!! Woo hoo. We are so excited. Only one more spinal tap and bone marrow aspiration is scheduled. We will continue to do chemo every week of the last 12 weeks, but then we will start coming to clinic only once a month. I can’t believe we’ve been doing this for almost 4 years. I am so ready. I don’t even think that Jeffrey can remember a time when there was no cancer.

Thanks for checking in.

Take Care & God Bless,
Chuson

Thursday, August 25, 2005 10:14 AM CDT

Jeffrey had his spinal tap on Monday. We got to the hospital around 8 and the procedure was done by 9:30 am. We left the hospital around noon. The final results are in and the CSF is CLEAR!!! Yay! What a relief. They will do another one in 3 months to check again. Tuesday morning his back was sore and he was tired. They left his port accessed on Monday since he was scheduled to get chemo on Tuesday, so he did not sleep well. It has been awhile since he has had it accessed overnight.

Tuesday afternoon we went to the clinic for chemo. He got his Vincristine and Cytoxan. His stomach was pretty upset, but he is doing better now.

Jeffrey's open house was on Tuesday night. Troy ended up taking him because my first night back to class was also Tuesday night (figures). I made the very end of Open House because my class let out early.

August is almost over. November is 3 months away. We are so excited. Pray for remission forever.

We go back to clinic next Tuesday for another round of Vincristine and Cytoxan.

Thanks for checking in!

Take Care & God Bless,
Chuson

Thursday, August 18, 2005 4:42 PM CDT

Hello everyone. I thought I would update and let you know how everything was going. Jeffrey is due to get a diagnostic spinal tap this coming Monday to make sure everything is still coasting along smoothly. I hate these things. Please say a prayer that all is well. These things always make me nervous.

Jeffrey's first day of school was August 15th. He is now a big 4th grader. His teacher this year is Mrs. Jenkins. Jeffrey seems to really like her. He has several of his friends in his class and I think his year is off to a great start.

Jeffrey is still doing golf and I have started learning as well on a regular basis. We are both enjoying it, but I have to say that Jeffrey is much better at it than I am.

Other than school starting, there is really not much else going on… We still go to clinic weekly.

Take Care & God Bless,
Chuson

Wednesday, July 27, 2005 4:32 PM CDT

Jeffrey is 9 years old!!! I can’t believe it. On his birthday we had to go to clinic for his weekly chemo. He got his leg shot and right before we were ready to leave all the nurses and child life people came in and sang Happy Birthday to him. They also gave him several gifts. It was neat and he really enjoyed it a lot. I took the whole day off from work to spend some time with him. We went and had a late breakfast at IHOP and then went home to hang out for a little while. We opened up his Bionicles and other stuff he got from clinic. That afternoon we went to AMC Funfest. We bowled a few games, ate, and played games for tickets. It was fun. That night we went to Razoo’s for dinner (Jeffrey’s choice). It was a nice day all around.

He has been going weekly for his methotrexate shot. He takes it very well. Other than an upset stomach, he has handled it well. This past weekend, we had his birthday party. It was a rock wall climbing party. He had a lot of fun. If I can remember, I will try to post some pictures. Then two of his friends spent the night. We took them to see Fantastic Four. That is a good movie! Sunday, he had a playdate at a friend’s house. They went fishing and he caught a fish. Then they went swimming.

This weekend we are going to Sea World. I am excited and so is Jeffrey. We really had a nice time last year when we went. This year some of our friends are coming with us, so it should be a lot of fun. I am excited to get away for a few days.

School starts here on August 15th. Jeffrey starts the 4th grade. Wow.

Things are going well. Jeffrey is still doing golf. I think it is harder than he anticipated it would be, but he still enjoys it. We go back to clinic on Tuesday for another round of methotrexate and then I think the week after we switch back to Cytoxan and Vincristine (yuck). Only 4 more months to go!!!!

Take Care & God Bless,
Chuson

Tuesday, July 5, 2005 3:22 PM CDT

Hello everyone! Sorry for the major delay in updating. A lot has happened, but all in all, things are going well. We finished up baseball season. We were undefeated!!! Yay for the boys. Next season they will be moving to a semi-select league instead of doing YMCA ball. It should be more of a challenge, but still fun for the boys. Jeffrey loves baseball and had a great time.

I wanted a break from sports practices and games, so we decided to opt for golf this summer. He had his very first lesson 2 weeks ago and LOVED it. Troy's brother had bought him some clubs awhile ago, and he has not really had a chance to use them yet. He did really great. By the end of the first lesson he was hitting them 100 feet. We missed this past Saturday because he was not feeling well due to chemo he got on Friday. It is once a week lessons for 10 lessons. I think it will help him with his coordination.

He also got glasses in the past month. He had been having headaches quite often and I was rather concerned it was chemo or cancer related and it turns out he has an astigmatism (just like me) and was a little nearsighted because of it. Headaches were caused by straining to see. Something semi-normal for once!

Jeffrey missed a week of chemo due to low platelets, but bounced back the following week and continued on. They Cytoxan and Vincristine really mess with his head and stomach. The stomach pain has been pretty bad in the couple days after the chemo. On a positive note, we switch back to the weekly methotrexate shots in the leg this next week, so he will get a break from the infusions.

He went to Camp John Marc last week (a week long summer camp for kids with cancer). It was a lot of fun for him. They went down on a train to celebrate it being the 25th year of camp. He said the train was slow! He had a great time at camp and got to fish, ride horses, and climb the rock wall. It is so good for him to get away and be a kid.

In two weeks, Jeffrey will be 9 years old. Wow. Time has flown by. He is growing so fast and he looks so great. (Knock on wood.) We are having a rock wall climbing party for his birthday. Should be lots of fun. I never know what to get him anymore for his birthday. He never really asks for anything. He would just rather you spend time with him.

The end of the year is approaching fast. I see the light at the end of the tunnel.

I hope you all had a safe and happy 4th of July. God Bless America. Remember that freedom is not free and say a prayer for those that fight for that right for us.

I will try to update more regularly. We are just enjoying our time together and trying to be as normal as possible.

Take Care & God Bless,
Chuson

Tuesday, May 10, 2005 12:37 AM CDT

I hope you all had a wonderful Mother's Day. Sorry for the long delay in updates. Jeffrey is doing very well. His spinal fluid came back all clear! Yay. He is back to doing the weekly methotrexate shots in the leg and nightly 6MP. Time is just flying by and the school year is almost over. We are doing baseball 3 days a week and things are pretty busy. I think that Jeffrey is definitely ready for the school year to be over. He has been struggling lately with his school work. I have noticed it is harder for him to do things that he used to not have much trouble with. I am assuming it is due to some affects from the radiation he had in November. Or maybe it is just typical 3rd grade summer fever??? We will go back to the neuropsychologist this coming October to have all his neurological testing redone to see if there are any changes that need to be addressed.

Mother's Day was very nice. My Mom came up to visit. We all went to church, and then Troy took us to Mother's Day Brunch at Central Market. I enjoyed it very much.

Not much else going on around here. Just counting down the days until November and praying for continued remission forever!!!

Take Care and God Bless,
Chuson

Thursday, April 21, 2005 12:45 AM CDT

We made it through the 4th round of the Vincristine and Cytoxan. This time went pretty well. His nausea and stomach pain was minimal, but they did give him both Zofran and Visteril before we left the clinic. Jeffrey took the Math TAKS test in the morning and then we went to clinic after he was done. We go back to clinic on Tuesday, and we start 6MP and the weekly methotrexate shots in the leg. He is also scheduled to get a diagnostic spinal tap. I am a little nervous, but am praying for clear results. He seems to be doing well… I am glad that the port infusions are done for a little while.

Jeffrey is really enjoying baseball. They have played 2 games so far and won both. I think baseball is by far his favorite sport. Jeffrey made the A-Honor roll again. He is doing really well in school and we are so proud of him. So last night as a reward, we took him to Chuck E. Cheese. We very rarely go there, so it was definitely a treat for him. He really had a good time playing the games there.

Please pray for clear fluid results for Jeffrey. I will update more next week.

Take Care & God Bless,
Chuson

Thursday, April 14, 2005 9:49 AM CDT

So after another round of Vincristine and Cytoxan, I think we have decided, we much prefer the methotrexate shots in the leg. Jeffrey said wistfully in clinic, "I wish I was just getting the leg shot." The Vincristine is causing some pretty bad leg pain this time around and the Cytoxan well, it comes with all the nausea and tiredness and stomach pain we have come to expect. In the evenings after the Cytoxan, Jeffrey becomes very moody and grumpy. If you ask him what is wrong he just says he doesn't know.

Only 6 more weeks of the school year left. Baseball starts this weekend. Jeffrey is very excited, but worried because he says his legs are not working well. Hopefully, the affects will subside shortly after we are off the Vincristine. The weather is beautiful here in Texas. This past weekend we went to the drugstore and bought a $2 kite and flew it. Well, Troy and Jeffrey flew it, I just watched, but Jeffrey had a great time. He said it was "awesome". We also spent a few hours looking for a "pet rock". Jeffrey's science assignment was to find a pet rock the size of his palm at least, and do a write up on it. Do you know how difficult it is to find a rock in this City? We even debated going to Home Depot and BUYING one that is how desperate we were getting. We did eventually find one though.

We go back to clinic on Tuesday for another round of chemo. I hope all is well with you.

I will update more later.

Take Care and God Bless,
Chuson

Wednesday, April 6, 2005 9:49 AM CDT

Hello everyone. Jeffrey went yesterday for his 2nd round of Vincristine and Cytoxan. The first week was harsh on him, but yesterday went pretty well. However, we have been dealing with stomach pain for the last couple months, and the doctors said yesterday that he is showing all the symptoms of a stomach ulcer, which can be caused by all the stuff he is having to take. No nausea, just stomach pain, and normally the pain is on an empty stomach. So we are going to try Zantac twice a day and if that doesn't help they are going to do something called a PrevPac (spelling?) which is a combination of prevacid and an antibiotic. The nurse said sometimes the ulcers have a certain type of bacteria in them that is harder to get rid of and that is what makes the PrevPac necessary. All I can say is, we are ready for November!!!

Baseball season has started. Jeffrey is on a team that he has played on several times before. The coach, Mike Flint, is GREAT. He really is good with the boys and Jeffrey is really looking forward to the season. The year is going by quickly. I can't believe the school year is almost over. Jeffrey is going to be 9 in July and I am wondering where the time went.

Thanks for stopping by.

God Bless,
Chuson

Thursday, March 24, 2005 10:19 PM CST

I have finally put up some new pictures. They are old, but I never got around to posting them... Sorry. I love to procrastinate!!!!

I hope you all have a wonderful Easter. Jeffrey is doing well. The pictures show him how he has been over the last several months, but now his hair is really starting to grow back. I will try to be better with the pictures and get some recent ones posted soon. His counts are still really good (too good) and he did the methotrexate shot this week with no problems. Next week we switch to Vincristine and Cytoxan. We are planning on going to an Easter carnival at church on Saturday. Tomorrow (Good Friday) Troy and Jeffrey are both off from work and school. They will spend the day together, and I will go to work.

Have a blessed Easter.

God Bless,
Chuson

Wednesday, March 16, 2005 1:58 PM CST

Hi. Thanks for checking in on Jeffrey. All is going pretty well here. We are busy as always, and I am wishing for things to slow down a little.

Jeffrey's clinic visits have been pretty uneventful. He goes in, gets his counts checked, they turn out normal, and he gets his methotrexate shot. He is still doing the lower dose of nightly 6MP and his ANC has been rather high. They said they will give it a few more weeks, before they try adjusting the dosage. He has had several headaches the past week, and that is concerning… but, it is allergy season. So, they said to monitor him and keep a record of how often they occur. It is right in front by his sinus area, so they suspect it may be something related to allergies… Of course, my mind takes a different course, but they said that if it were leukemia related, the headache would not be focused in that area, but more to the back. Either way, he is scheduled to get another spinal tap shortly.

On a happy note, Jeffrey passed his reading Taks testing. We got the news right before spring break. I know it was a relief to Jeffrey as he was kind of nervous about the whole thing. Jeffrey is on Spring Break this week. He spends the days with one of his best friends, Eliandro. I am grateful to Liz (his mom) for keeping him for me this week, so I do not have to pay for childcare costs! I am planning on taking Friday off to spend some time with him myself. We are in between sports right now, and I think Jeffrey is ready to get started with baseball. They do not start until the middle of April.

Well that is all the news for now. I hope all is well with you.
I will update more again next week.

Take Care & God Bless,
Chuson

Thursday, March 3, 2005 11:01 AM CST

We had Jeffrey's last basketball game this past weekend and a party at Cici's pizza afterwards. We had pizza, cupcakes, handed out the trophies, and Troy got a nerf basketball hoop for each of the boys. The boys got him a card and pitched in for a gift certificate to Don Pablo's. It was a nice way to end the season. Several of the boys want to come back and be on his team next year. I thought that was nice. Troy did a great job this year, and Jeffrey was very happy to have Troy as his coach. The season was a lot o f fun, but it is kind of nice to not have somewhere to rush around to during the week.

Jeffrey went to clinic on Tuesday. He got his methotrexate shot and had his counts done. His counts were good... a little too good. So if they stay in the range they are at, then they will probably increase his 6MP dosage. It is hard to find a happy medium with this whole chemo thing. 75 mg tore up his stomach, and 50 mg is not keeping his counts where they want them. I'm sure many of you know what that is like. I am very proud of Jeffrey of how well he is handling the leg shots in clinic. We have come a long way in 3+ years. On one hand it is sad that he has "gotten used to all of this", but on the other hand, it is nice that clinic is not a battle.

Jeffrey's hair is growing back quite nicely. His hair is so soft! I think he is getting tired of me rubbing his head all the time. He has not had hair since November, but I am thinking we will be back to getting his hair cut every 3 weeks again soon.

I will update more again next week. I hope that all is well with you.

Take Care and God Bless,
Chuson

Thursday, February 24, 2005 2:00 PM CST

Jeffrey is doing well this week. The lower dosage of 6MP seems to be easier on his stomach. He did his methotrexate shot this past Tuesday really well and is doing good this week.

This Saturday is his last basketball game of the season. We are having the end of season party afterwards. Troy did a great job coaching the boys, and several have said they want to be on his team again next year if he coaches. This group of boys has really come a long way this season. Jeffrey loved having Troy as his coach, and I think Troy enjoyed it as well.

Jeffrey goes back to clinic on Tuesday to get another methotrexate shot. I can't believe it is already March. Time is flying by, and we are looking forward to the end of this year.

Thanks for stopping by. I will udpate more next week.

Take Care & God Bless,
Chuson

Thursday, February 17, 2005 10:39 AM CST

Jeffrey went to clinic on Tuesday. His counts were fine, so he got his methotrexate shot in clinic. He did really well for that. We also started doing the nightly 6MP pills. Dr. Griffin reduced his dosages to one pill a night. Hopefully this will keep his counts from crashing like last time, and we can avoid the hospital stay.

Otherwise, things here are going okay. Staying busy with work and school. Jeffrey has two more basketball games left. Valentine's Day was nice. Troy cooked us lobster and crab legs on Saturday night. It was very good. On Monday, he met me at work with some flowers and a card. It was really sweet. Jeffrey made me a card when he was at our friend Gloria's house. It was really cute. He also made a small book at school called "A Book About Someone I Love". He wrote about Troy & I. He is such a good kid. It was really cute. They had a Valentine's party at school which he really enjoyed, and since our clinic day was moved to Tuesday, he got to stay for the whole day on Monday.

My friend Kiara is coming to visit from Washington. We went to high school together and she is flying in today for the weekend. I am excited, she has not seen Jeffrey in almost 2 years.

Take Care & God Bless,
Chuson

Thursday, February 10, 2005 9:31 AM CST

Jeffrey went to clinic this past Monday. His counts had come up quite a bit and so they went ahead with chemo. He got the Vincristine and Cytoxan again. They are going to just skip the week that his counts crashed, so next week we start the methotrexate shots in the leg again and the nightly 6-MP. They are reducing his dosage of 6-MP, because they think that is why his counts had such a hard time last round. It is just getting to be too much for his body, and his marrow is not able to recuperate as quickly. Monday's chemo went pretty well. He did not have very much sickness (yay). He does however, have the sniffles and a small cough again, so we are keeping an eye on that. There is so much sickness going around this area lately, I am tempted to just pull him out of school until the cold season is over, but I do not know how I would manage that. He has been coming to work with me lately. I did let him go to school today, so we will see how that goes. He went Tuesday for half a day, but then had to come home because he was not feeling that well. My major concern is that he is getting behind in his school work, and Texas has their major testing coming up at the end of this month. All third graders have to pass both the math and reading section to go on to the 4th grade. I have noticed lately, that Jeffrey is having some problems with memory and grasping concepts. At first I just thought maybe he was tired, but it has been going on for some time now, and so now I am thinking it might be affects from the radiation he had in November.

We are switching clinic days from Mondays to Tuesdays. Dr. Griffin is moving to Tuesdays and requested that we switch also. It's not that big of a deal, so we decided to go ahead with it. So our next clinic appointment is this coming Tuesday.

I hope that you are all doing well. We are just going along. Taking it day by day. Only 10 more months of treatment left for us.

Have a wonderful weekend and Happy Valentine's Day. Hug someone you love.

Take Care & God Bless,
Chuson

Wednesday, February 2, 2005 10:23 AM CST

Hi there. Went to clinic on Monday. Jeffrey's ANC came back up to 555 and his WBC was 1900. So they decided to go ahead with chemo. It made him pretty sick, so he has not yet gone back to school. I stayed home with him Monday and Tuesday, and Troy is home with him today. His stomach is giving him a hard time this week. Hopefully, he will start to feel better very soon.

We go back to clinic on Monday. Thanks for checking in.

Take Care & God Bless,
Chuson

Friday, January 28, 2005 4:34 PM CST

Jeffrey got to leave the hospital last night. They seem to think that Jeffrey just caught something viral. He is in much better spirits, although we are still in isolation for the weekend. He is disappointed to not get to play basketball, but with an ANC of still O (but with lots of monocytes - according to Dr. Griffin), it is better to be safe than sorry. Believe me after 4 days in the hospital, I am not anxious to go back, so isolation is fine with me. We go back to clinic on Monday to reassess the situation and to see if we will proceed with chemo or not. Thanks for checking in.

Take Care & God Bless,
Chuson

Monday, January 24, 2005 4:30 PM CST

Jeffrey was admitted into the hospital today with fever and neutropenia. His white count is 300 and his ANC is 0.

Please pray that he is able to fight off whatever is going on with him. They have tested him for flu, infection, and done chest x-rays for pneumonia. Waiting on test results.

Thanks,
Chuson

Tuesday, January 18, 2005 2:08 PM CST

Hello everyone.

Yesterday was probably one of the most trying days we have had in a long time. I woke Jeffrey up at 6 am so that he could eat by the 6:30 am cut off time. I made him eggs, sausage, etc. He did not really feel like eating, but ate knowing that he would not get to eat again until late that evening. 5 minutes before we walked out the door, he threw up everything he had eaten. Not a good way to start the day. We got to clinic around 7:50ish and there were already 3 kids ahead of us, which is surprising. Normally when we get there that early, we are the first or second ones there. We had brought along some Gatorade since he could drink until 10:30. The nurse drew his labs and put us in a room. He drank some Gatorade and started watching cartoons and napping on and off. Shortly, the nurse came in and told us she had to redraw his labs, because she had dropped his sample and it spilled all over the floor. (This and the vomiting should have given me some indication of how the rest of the day was going to go.) Stellina, his chemo nurse, came in and started to get ready to access him for chemo. He started feeling sick and he threw up all the Gatorade he had drank. We finally got him accessed, and she gave him some Zofran to ease his stomach. He got the Vincristine, and she waited before she started the Cytoxan. Shortly after the Cytoxan he started throwing up again. I felt so sorry for him. They finally gave him some visteril around noon and he fell asleep. We were supposed to be over at the main hospital by noon, but we did not make it until one o’clock. He was so doped up, he could not walk, so I had to push him over there in a wheelchair. I finally got him up to day surgery. They did not have an open single room, and since he cannot share with another child, we had to wait. Then he had to get up and stand on a scale, etc. Which he did not feel up to doing, and he just cried and cried. I was really frustrated. They took all his measurements in clinic. I just don’t understand why they repeat all the same stuff? The nurse in day surgery started all his paperwork, and told me that he was there to do a spinal tap with intrathecal meds. I said “NO, he’s not!” He is only there for a diagnostic spinal tap. No meds. After kids get cranial radiation, they SHOULD NOT get intrathecal meds because it becomes too toxic. At this point, I became paranoid (really, do I ever stop?). I tell her to make absolutely sure that he is not scheduled to get meds. She goes and checks and she comes back and rips up the paperwork to show me, and rewrites the new paperwork with the correct information on it. She leaves and the anesthesiologist comes in and repeats the SAME INFORMATION (spinal tap with intrathecal meds). I’m sorry, but I snapped. I told him that Jeffrey was absolutely NOT to get meds in his spine and that I had already told the nurse this. He immediately said, well I’m sure the doctor knows this. I told him, no you need to make sure that is not going to happen. *sigh* Jeffrey has not had a spinal tap in quite a while, so he was frightened. He kept saying he was scared and did I promise he was going to be okay. That is heart wrenching to me in itself, but after the morning he had had, I felt so rotten for him. *sigh* If there ever was a day where I just wanted to burst into tears, it was yesterday. Several times I had to really just suck it up and keep moving. And I’M not even the one going through the bad part, Jeffrey is. He got through the spinal tap and we finally left the hospital at 5 yesterday. It was a looong day, but thank goodness it is over. We only have to do the spinal taps every once in awhile so at least it will be awhile before the next one. Please pray that the fluid comes back clear. These kids go through so much, it makes me sick to think about it. Jeffrey goes back to clinic again on Monday. His ANC was kind of low this week (but still high enough for chemo), so hopefully, this chemo he got yesterday will not knock them down more.

I promise to make the next entry a more cheerful one. I just really needed to vent. I will also try to update the pictures soon. These are kind of old.

Take Care & God Bless,
Chuson

Wednesday, January 5, 2005 3:59 PM CST

I hope that your 2005 is off to a very good start. I’m sorry for the lack of decent updates lately.

My resolutions for this year:

1) Exercise More
2) Worry Less
3) Stress Less
4) Spend Less

It’s more or less a lost cause, but hey, you gotta dream right?

Jeffrey is having some pretty big problems with the nightly 6-MP. The dosage is higher than he is used to and the chemo is tearing up his stomach. At least, we think that is what is causing it. He only has a week and a half more to go on the 6-MP and methotrexate before we switch to Cytoxan and Vincristine. Which, as the doc says, may or may not be better. He has nausea almost every day and he never wants to eat. Any suggestions out there? At this point if someone told me that if I dressed up like Bozo the clown and jumped on one leg around the block; he would feel better, I would probably give it a try. We’ve tried peppermint, 7-up, switching the time we give the medication, giving zofran and visteril, and now we are giving zantac (to reduce stomach acid) and zofran or visteril around the clock. That has controlled the vomiting, but his appetite still sucks. His counts are low, but his ANC is still good enough to get the chemo. Other than him feeling icky most of the time, he is doing okay. (My mantra: It could be worse, it could be worse, it could be worse…)

Christmas was great for us. Jeffrey set out cookies, milk, and a picture that he drew for Santa out on the fireplace, and then camped out on the couch to wait for him to show up. We’re not real sure what time Santa came (although, I am positive it was really, really late or very, very early – however you would like to look at it), and we’re also amazed by the fact that he managed to deliver the basketball hoop (his from last year broke) and ninja turtle toys without waking him up. As Jeffrey says, it must have been magic. Troy got him a portable dvd player that is actually really neat, and he has been taking it to the hospital and to my office when he has to come with me.

Jeffrey’s first basketball game of the season is this Saturday. Troy is busy getting everything prepared for the boys. They have only been able to have one practice so far. The 2nd was canceled due to bad weather and then we took a break for the holidays.

Jeffrey goes back to clinic on Monday for another round of methotrexate. I pray that 2005 will be a good year for us. I am counting down the days until November when he should be getting off of treatment.

I hope you are all having a wonderful year so far.

Take Care & God Bless,
Chuson

Saturday, January 1, 2005 3:58 PM CST

HAPPY NEW YEAR TO YOU ALL!!!!!

HERE'S TO A WONDERFUL 2005!!!

God Bless,

Chuson

Sunday, December 26, 2004 12:06 AM CST

I just wanted to stop in and say I hope you all had a blessed, wonderful, and safe Christmas.

Ours was very nice and filled with much joy. We were able to see loved ones and enjoy each others company.

Remember that Jesus is the reason for the season!!! Take the time to take notice of all the blessings in your life and take nothing for granted.

Have a wonderful New Year's. May 2005 be better for us all in every aspect of our lives. I will update more later. Jeffrey goes to clinic tomorrow.

God Bless you all!
Love,
Chuson, Troy, and Jeffrey

Friday, December 17, 2004 9:35 PM CST

Hello everyone. I hope this update finds you all doing well. Lots going on over here. Most importantly though, Jeffrey is doing well. We are doing weekly methotrexate shots in the leg still and nightly 6MP. The 6MP makes his stomach upset, but for the most part, he is doing very well. We are only doing counts every other week now and that really minimizes our time in clinic. Last Monday we had a real treat. We went in really early for clinic, then we went over to the main hospital because some people from church were coming and we were going to hand out the fleece blankets we had all made. Jeffrey and I got there a little early, and we got to meet the Dallas Cowboys and the cheerleaders. For those of you that don’t know, I am a huge Cowboys fan. It was a lot of fun. We met Eddie George, Vinnie Testaverde, Drew Henson, Tony Romo… just to name a few. There were quite a few of them there. They were all very nice. Jeffrey got many autographs AND he also got autographs from several of the cheerleaders. He thought they were very pretty! :o) And really they are. They were all beautiful. Then we got to go upstairs to the playroom and see some of the kids. I think the ladies from church really enjoyed seeing a few of the kids get their blankets. We, of course, did not get to see too many or go to any of their rooms due to the new privacy laws and also infection/contamination issues. The blankets were awesome and it was really a nice project for us.

Work has been really crazy and hectic for both Troy & I, and the holiday rush is upon us. I can’t believe that Christmas is less than a week away. We are nowhere near being ready. To top it off, Troy had oral surgery today. I really feel sorry for him right now. He is in quite a bit of pain. He had his wisdom teeth removed. If you have a moment, maybe you could say a prayer for quick healing for him. I am glad it is done and over with, but am ready for the next few days to go by so he can start feeling better. Jeffrey is so sweet. He is very concerned about Troy and has made something for him every day in art class this week.

Oh I forgot to mention… basketball season started. Troy is coaching Jeffrey’s team this year. Jeffrey was so excited. After one practice, Jeffrey gave Troy a card that said he is the BEST BASKETBALL COACH EVER. I thought that was cute. I asked him how did he know that after one practice? And he said, “I just do”. Jeffrey just adores Troy. It is funny, but nice that he has someone to look up to. The first practice went really well. Several boys from Jeffrey’s school are on his team, and they are all really excited about playing.

Jeffrey goes back to clinic this Monday for counts, and also to get his next round of methotrexate. I will try and update more after that.

Take Care & God Bless,
Chuson

Monday, December 6, 2004 1:10 PM CST

Hello everyone. I hope you all had a wonderful and blessed Thanksgiving holiday. It was a nice Thanksgiving for us here. Jeffrey finished his radiation without any major glitches. However, his hair started falling out the Monday before Thanksgiving, and by Thanksgiving day, he had several bald spots, so… he asked Troy to shave his head. So early that morning that is what they did. As usual, he was okay with it, I was sad. Ah well, what can you do? The radiation had also started to kick in, and he was exhausted. He was getting severe headaches and also his eyes were bothering him. He was tired that day by 3 pm and so we just let him rest. He got very tired, very easily for a couple weeks and slept quite a bit. He is now starting to get back to normal. I am grateful, because, he seems to be handling it really well. We went to clinic today to start Maintenance therapy. For this first 6 weeks, he will get 6-MP nightly (they upped his dosage) and a shot of Methotrexate in his leg every week at clinic. Dr. Griffin said today, that during the last 3 weeks, which is the “peak” of the treatment, that Jeffrey looked better than most kids do. He says a lot of kids get a lot more affected during this last month before Maintenance. Jeffrey did really well for his shot today. I am so proud of him.

My church home group made fleece blankets for the cancer floor at Jeffrey’s hospital. It was really nice and we made enough for the whole floor! We are going to take them to the hospital during the holidays to maybe brighten the children’s time there at the hospital a little. I remember being there over the holidays last year, and well, it was pretty depressing. I am so grateful that we are past the hospital stays.

The children’s hospital Christmas Party is this Wednesday night. Jeffrey is looking forward to it. We were not able to go last year, because his ANC bottomed out and we ended up being admitted. I can’t help but compare last year to this year. What a difference.

I hope you all have a wonderful week. Jeffrey goes back to clinic on Monday for another round of Methotrexate.

I will update more then.

Take Care & God Bless,
Chuson

Wednesday, November 17, 2004 1:24 PM CST

Hello everyone! Sorry for the long delay in updates. Things are very hectic around here and I have not had time to get on the computer much. We went for Jeffrey’s radiation consult on Wednesday, the 3rd. Dr. Nielson is a wonderful doctor. She took plenty of time and answered all of our questions. We heard a lot of stuff that we did not want to hear, but the bottom line is, the radiation is a necessary part of his treatment. He did a cat scan and made his mask that very same day. He did great. The nurses said he is so well behaved and laid back. One of them also said he is the best kid she has ever seen! We were going to start on the following Monday, but Dr. Bowman (his oncologist) decided that a bone marrow aspiration was definitely required before starting the radiation. They did not anticipate finding anything, but wanted to “be sure” that nothing was going on in his marrow. The marrow was clear, and Jeffrey started his radiation treatments last Tuesday. He was a little nervous, but to be honest, I took it a lot harder than he did. I told him it would not hurt and he took his little seal that he got from Sea World back there with him. He went back with the nurse without a fuss and did not seem worried at all. Me… well, it made me so sad to see him walk away. He has done fine with the treatments. He has had some fatigue and headaches, but other than that, he has handled things pretty well. The Vincristine has made his legs hurt and the steroids, well… he took a lunchbox with a sandwich, apple, and cookies today to school and also a big bag or pretzels “just in case”. He also asked if it would be okay if he used his lunch account for lunch. I have to wonder, “Where is it all going?????” Saturday, we took him to Dave & Buster’s for dinner and games. He had a great time. He got a little baseball lava lamp and some other knick knacks. He always wants to use his points to buy gifts for people, and I really had to talk him out of getting my Mom a pink flamingo lamp. He got her a stuffed snowman instead. He has been going to bed earlier than usual, but when he is awake, his energy level seems to be the same. It is very rainy and gloomy here in Texas. Jeffrey got his report card and he did very well. He got mostly A’s, and one B. He was kind of down because this is the first time he has not made the A Honor Roll. I told him he did great and that a B was definitely still a good grade. We have 4 more radiation treatments to go and then we should be able to move into Maintenance Therapy again. I am definitely ready! Thanksgiving is just around the corner. This time last year, Jeffrey was on steroids also. He is already talking about the turkey and the gravy and the cornbread!

Take Care & God Bless,
Chuson

Monday, November 1, 2004 3:09 PM CST

Jeffrey methotrexate infusion went okay. We went to clinic Monday morning, and his counts were good enough, but they forgot to tell us and we sat in clinic for an extra hour! I was frustrated to say the least. We got to the room, and they started his chemo at 4:30 pm. He was sick this round, but we expected that. What we didn’t expect was his level coming back high at the 42 hour blood draw. I guess the last round couldn’t go by smoothly!!! We didn’t get out of there until almost 5 on Wednesday. Ah well. At least it is over. Friday, we went in for the neuropsych testing. I will get the full report in a couple weeks, but I think he will do fine. It was a little depressing to me, because when I was looking through all his paperwork and signing all his stuff, they had notated the reason for him being there on the summary page. It said, “Reason for visit: Cerebral Degeneration”. I don’t know why, but that really hurt me. I am aware of what the radiation can / may do, but I guess right now I am just trying to block it out. He is scheduled to start his radiation therapy next week. The doctor said that they will use this year’s test as a baseline for radiation damage in the future. She also said that it can take up to 5 years for the side effects to actually show up. She was really nice about it, but she said she wanted me to be prepared for what could happen. She also said that the radiation oncologist would be able to answer more of my questions, but that in her experience the most common problems were memory loss and retainage and math/cognitive functioning.

It has been one year since Jeffrey relapsed. It has been a loooong year.
He has been complaining (since last night) of soreness and pain in his left armpit. I’m trying not to be paranoid, but a swollen lymph node was one of the first symptoms he had of having leukemia. He is supposed to go early tomorrow morning to clinic anyways, but it is taking everything I have to not demand that he be seen today.

He is scheduled to go in tomorrow for his last round of VP-16 and Cytoxan.

This weekend was a nice one. Busy, but nice. We took him to play laser tag with Troy’s cousin’s son. It was his birthday and he asked that Jeffrey get to come and play laser tag with him. Then we went to Jeffrey’ s baseball game. He played shortstop and 3rd base this game. He got a kid out when he played shortstop. There were only a couple hits this game, but that is an improvement!!! Jeff also had one walk and one hit. It was nice to see some action!! That evening, we took him to a friend’s Halloween party. It was fun. Sunday, we went to church and then that evening Troy had a flag football game, then back home to trick or treat. We walked around for about 40 minutes (which took us through about 4 blocks), and then headed back to the house to hand out candy the rest of the night. We didn’t want to go too far, because rain was heading in our direction and they kept saying it was going to be pretty stormy. It held off though, until about 9 pm, and then it POURED. Jeffrey had a good time. I have some pictures that I will try to get uploaded soon.

On a very sad note, Connor Hunley passed away. Yesterday was his 10th birthday. He was one of the strongest kids I have ever heard of. Take a moment and go by his site. What heartbreak his parents feel right now.

http://www3.caringbridge.org/tn/connorhunley/index.htm

Cancer Sucks.

Until next time,
Take Care & God Bless,
Chuson

Tuesday, October 19, 2004 2:51 PM CDT

Hello everyone. Jeffrey had his last scheduled spinal tap yesterday. We are almost at the one year mark since his relapse. It has been a long year and I am ready for it to be over. Come on 2005!!! Jeffrey’s procedure went well. He picked out some hot wheels cars (like he needed anymore, I swear he has at least a hundred at home) out of the treasure box and we headed to the OR for the tap. His back was a little sore and he slept a lot yesterday, and other than being kind of tired this morning he is okay. He has a hard time getting going on the mornings after his treatment. I am sure that is completely “normal”. We are having a pretty decent week. Sunday, we went to the Light the Night walk for the Leukemia and Lymphoma Society. Saturday, was baseball and then we took my Mom out to eat. Today, Jeffrey has baseball practice, it is going to be their last one, and actually, they are not even going to practice baseball. His coach just wanted to get them together and run around doing something FUN. He mentioned setting up a football game or something. I thought that was a neat idea. They only have 3 more games left. This season was not as exciting as they usually are. It was the first season of kid pitch and MAN the games were soooo slow. Most of the kids walk and it is a little on the frustrating side. We normally only play 2 innings in a hour and fifteen minutes. Everyone says that it gets better, and Jeffrey still is having a great time, so I guess that is all that matters. :o) Next week, Jeffrey goes inpatient for IV methotrexate.

I hope you all have a wonderful week. I will update more after his hospital stay.

Take Care & God Bless,
Chuson

Tuesday, October 12, 2004 5:07 PM CDT

We went to clinic this past Thursday. Jeffrey’s platelets were low and so we ended up having to stay so he could get platelets. We continued the GCSF shots until Monday. Last night was the last one! No more scheduled Ara-C and no more scheduled GCSF! He goes to clinic this Thursday to get his counts checked and then next week will be a spinal tap with intrathecal meds. Today, I took him to get his flu shot. He did really well, I was proud of him.

There is not much else going on. We are busy with baseball and school and work, and well… LIFE. It seems like we have no spare time these days. It is tiring, but we are hanging in there.

Please pray for all the kids going through treatment and all those families that are enduring losing their loved ones. It is a hard road we travel and sometimes, we fall and need someone to encourage us to help us get up. I know that God is in control, but I can’t say that I know why these things happen. In fact, it all just seems so unfair to me. But something I read in the book “The Five People You Meet in Heaven” stuck out to me. It says…

“Fairness does not govern over life and death. If it did, no good person would ever die young.”

Take Care & God Bless,
Chuson

Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge him, and he will direct your paths.

Tuesday, October 5, 2004 11:32 AM CDT

Jeffrey was released from the hospital Friday afternoon from his inpatient Ara-C. This round was extremely difficult for him. He was extremely nauseous and in much pain the whole time. He ran a fever on Thursday and Friday. However, since he normally does run fever, the doctor decided to let us go home. He was very despondent this round as well. He perked up when we got to go home, but he was not feeling well at all. He ran a fever most of Friday night and slept quite a bit. Saturday was not that much better. He felt weak and tired. He took a long nap during the day, and said he did not feel well enough to play in his baseball game. He did say he would like to go and watch. So we went to the game. When we got there he said he would like to try and play the first inning. After he got out in the field and came back in, he said that he could not bat. Running was causing him too much pain. So he sat out most of the game. Sunday, he felt a little better but was still weak. He played in his game, but you could tell he was not 100%. It really made me sad to see him struggle so much, but he insisted on going both days. This week has been really hard on us. We started the GCSF shots on Saturday. Those are going fairly well. I am glad that this is the last scheduled time for us to do this.

A coworker of mine’s son had a friend who was diagnosed with bone cancer a while back. This boy, Stephen, passed away yesterday. He was only 15 years old. What hit me the most about this child, is that he knew that his passing was imminent, and his main concern was his parents and if they would be okay when he went on. What a burden for a child to carry. What heartbreak his parents must be going through right now. Life is just so unfair sometimes.

Then today I visited a child on caringbridge only to find out that after they have gone through so much, they were hit with even more bad news. The cancer has spread rapidly and they don’t know what else they can do. Please go by his site and wish them well and say a prayer for this family. Encouragement means so much.

http://www3.caringbridge.org/tn/connorhunley/

What the heck is going on? I don’t know what to think anymore. I am so sad this week.

On a brighter note, today was Jeffrey’s award ceremony at school. They do one every time report cards come out. Jeffrey got an award for good citizenship (good behavior in school) and the A Honor Roll award. He was very excited. The only one he did not get was the perfect attendance award.

I hope that you are all doing well this week. Jeffrey is going to clinic on Thursday to get his counts checked. I have seen some bruising on his legs already so I’m pretty sure his platelets are on their way down. I will try and update more later this week.

God Bless You All,
Chuson

Thursday, September 30, 2004 4:53 PM CDT

I am so sorry for the severe lack of updates lately. I don’t know where the time has gone. Last Thursday, Jeffrey went in and got VP-16, Cytoxan, and Messna. It was a long clinic day, but it went as well as can be expected and we got to go home. That weekend was the Light The Night Race benefiting the Candlelighter’s in downtown Fort Worth. It was a lot of fun.

We are planning on doing the Light The Night on October 17, in Sundance Square for the Leukemia and Lymphoma Society. If you would like to make a donation or join us, send me an email. We would be so glad to have you come out!!!

On Wednesday, Jeffrey was admitted for Ara-C. I am so excited to say that this is our last scheduled Ara-C treatment!!! Woo hoo! We are almost one year into his relapse protocol. He has been rather sick this time around, but we are telling ourselves, this is it!!! Hopefully, we will get to leave the hospital tomorrow. We have one more inpatient stay for IV methotrexate and, I am thinking we will only have to go to the day clinic for treatment after that. I am so excited. On the other hand, it looks like he will start his radiation the 2nd week of November. I am terrified. I do not know why I am so afraid, I just do not know what to expect and am afraid for him.

This weekend, Jeffrey has 2 baseball games, one on Saturday and one on Sunday.

I hope you are all having a wonderful week.

Take Care & God Bless,
Chuson

Monday, September 13, 2004 11:02 AM CDT

Hello everyone. Jeffrey did really well this past Thursday for his spinal tap. His counts were good (of course, he has been off chemo for 3 weeks), and we headed over to the OR. The procedure went well and he came out of the anesthesia really well this time. No problems with breathing like last time! We go back to clinic this Wednesday to be admitted for Methotrexate. We also found out that due to all the delays Jeffrey has had, he is officially only on Week 42 of his protocol. So, now it looks like his radiation will not happen until December. I am hoping he will feel good for the holidays, but we’ll have to see.

Jeffrey’s baseball game this past weekend was cancelled. Apparently they overbooked the fields. Jeffrey was very disappointed. They will have another practice on Tuesday and their first game will be this weekend instead. Hopefully, we will be out of the hospital on Friday and Jeffrey will feel good enough to play.

This past Saturday we went to the TCU Horn Frogs game. It was the first game we have ever been to. Jeffrey had a good time. TCU smoked SMU. I felt kind of sorry for SMU after awhile, especially since we are not really for either team. I think the final score was like 44 to 0. We left during the 4th quarter.

The Candlelighter’s Light The Night Run is September 25th in Sundance Square in Fort Worth, Texas. If you can, come out and support the cause. It is a lot of fun. We went last year and will be going again. We are also doing the one for The Leukemia & Lymphoma Society on October 17th. If any of you would like to come out and join us let me know.

There were several children that passed away this weekend. I would like to ask that you all say an extra prayer for these families and for a cure for this awful disease so that no one else will have to go through this anymore.
No matter how you look at it, cancer sucks.

Take Care & God Bless,
Chuson

Wednesday, September 8, 2004 12:53 AM CDT

I hope everyone had a wonderful Labor Day weekend. Ours was really nice. Last Thursday, we went to the hospital for Jeffrey’s spinal tap. However, he was still congested and stuffy so the anesthesiologist did not want to proceed. So, Jeffrey has been delayed another week. :o( Not the best of situations, but what can you do? I would rather be safe than sorry anyways and Dr. Griffin thought it was for the best. It was rescheduled for tomorrow and I think he is well enough to do it now.

Sea World was so much fun!!!! The first day we fed the dolphins and the sea lions and looked at many of the attractions and saw some shows. Jeffrey’s favorite thing was the dolphins and the penguins. He really liked the Fools With Tools Sea Lion and Otter show. He also LOVED riding the Steel Eel roller coaster. I only rode on it once with them, but him and Troy rode on it several times. He is getting so big. He was disappointed that he was not big enough to ride the Great White. Maybe next time. He is about 3 inches too short. There were games you could play to win prizes and Jeffrey was just dying to play one. He picked one where you put a rubber frog on a catapult and hit it with a hammer to flip the frog into a watery area where there were lily pad bowls floating around. You had to get the frog into the bowl completely to win. Well, he did it on the very first try!!! He was so excited. He told me to pick out a prize. I got a very large green and pink frog. It was so cute. He was so proud of himself for winning it. At 5 pm, we went and saw the Shamu Show. We sat a little too close to say the least and we got totally soaked in freezing cold salt water!!! I could not believe how much water it dumped on us!! Jeffrey was kind of upset about that. We could not leave after the show because we had booked dinner there at the park at 5:45. We went to the bathroom and tried to clean up a little bit. It turned out okay. That evening we did “Dine With Shamu”. We had a great table right by the pool. The food was really good too.

The next day, we got up and went to Denny’s for breakfast. While we were there it started raining hard. Jeffrey was worried we wouldn’t get to go to the park. By the time we left, the rain had let up quite a bit, so we decided to drive out to the park to see how it was there. When we got there, it was not bad, so we went in. We went to the Lost Lagoon water park in Sea World. We decided to give it a try even though it was cloudy and looked like rain. It was neat. They have a wave pool and water rides. We started out in the wave pool. It started to rain a few minutes after we got in, so we got out and went into a shop to wait it out. It rained quite a bit, and we had to wait about 15 minutes or so. After it stopped raining we went back out and the rest of the day was fine. It sprinkled a little occasionally, but not enough to affect us. It was warm enough to have a good time in spite of the rain. We rode down the water slides and played in the wave pool. The water slides were fun. Jeffrey & Troy rode down a slide that was completely enclosed and dark, I did not do that one. We were at the water park for most of the day. Jeffrey did not want to leave. I was done after about 3 hours, but Jeffrey wanted to go to Splashtown (another little section of the Lagoon). It was a large playground with all kinds of water buckets and contraptions that you could use to spray or dump water on people walking by below you. There was also a huge bucket at the top that would fill with water and then tip over. Troy & Jeffrey stood under the bucket a couple of times. It was so much fun. We had a quick late lunch there at the park. We decided to go to the main park and walk around some more. After a little while Jeffrey said he was tired (from all the swimming). We went and saw Fools with Tools one more time and Jeffrey & Troy rode the Steel Eel one more time. After that we saw a water skiing show and decided to call it a day. We did not get to do everything, but we had a great time. It was a great mini-vacation. One I think that we all needed.

Jeffrey’s first baseball game is this Saturday. He is excited to play. I hope you are all having a wonderful week and I will update more after his spinal tap tomorrow.

Take Care & God Bless,
Chuson

Wednesday, September 1, 2004 2:30 PM CDT

Hi I just wanted to update before the weekend. Jeffrey is scheduled to go in for a spinal tap tomorrow. Jeffrey’s counts came up by Thursday of last week. His platelets were still around 78,000 (still low) but definitely on the way up. Monday, I took him back to clinic because he was extremely stuffed up and congested sounding and had a pretty nasty cough. The diagnosis? The common garden variety cold! I had to laugh when they said it was “just” a cold. It did ease my mind to hear that though. We go back tomorrow morning to be evaluated to see if he will even get the spinal. His nose was stuffed up so bad on Monday, and it is still a little stuffy. We will have to see if the anesthesiologist wants to proceed tomorrow or wait until he is all cleared up. Please pray for clear fluid and continued remission forever!!!

Please say a prayer for our friend Connor. No, we do not “really” know him, but if you walk this road you feel a kinship to others who are walking with you. Caringbridge gives us the resources to connect with one another. Connor had some pretty serious surgery done to remove a very large tumor yesterday. It was the size of a cantaloupe. He has a long road of recovery ahead of him and could really use some encouragement and prayers. These kids go through so much!!!

http://www3.caringbridge.org/tn/connorhunley/

This past weekend was a nice one. We went and saw Benji together on Saturday. It was a cute movie. Jeffrey really enjoyed it. He actually wanted to see The Thunderbirds movie, but it is not playing anywhere in this area. Then Sunday, after church, we took Jeffrey to a Ranger’s Game. Unfortunately, they lost, but the game was fun to watch.

Last night was Jeffrey’s first baseball practice of the season. He did really well! He loves baseball. It is his first season of kid pitch baseball. I am curious to see how it goes. Their first game is September 11. That seems kind of strange to me that they would start playing on that date.

I will try and update more later. It may not be until after the weekend is over. I hope you all have a wonderful Labor Day weekend. Hug your loved ones close and don’t take for granted the blessings in your life. Sometimes I get so caught up in the busyness of things, I forget to take the time to actually look and SEE what is around me.

Take Care & God Bless,
Chuson

Tuesday, August 24, 2004 10:46 AM CDT

Hi and thanks for checking in. Jeffrey went to clinic last Friday and his counts were actually okay. His white count was at 3300, but they told me to continue the GCSF. We returned to clinic this past Monday to find out that his counts had bottomed out AGAIN. This Ara-C really kills his counts. His WBC was at 800. Hemo at 9.3 and his Platelets were at 9,000. His platelets were concerning especially since he had hit his head at the playground in the morning playing hide and seek before his clinic appointment. He got platelets in clinic and his shots have been extended through Thursday. I had a feeling that he was going to need platelets, because he had bruises all over his legs. We go back to clinic Thursday morning to recheck his counts again. The week after that is a spinal tap week.

This past weekend was rather uneventful. I had to get some work done on my car this past Saturday. Afterwards, the three of us (Troy, Jeffrey, and I) went for a bike ride. It was a nice day for it.

We are planning on going to Sea World over the Labor Day Weekend. Jeffrey is excited about it. Hopefully, the spinal tap will go smoothly and he will feel good for the trip.
I will update more after his clinic appt this Thursday.

I hope you are all having a wonderful week.

Take Care & God Bless,
Chuson

Tuesday, August 17, 2004 5:03 PM CDT

Yesterday was Jeffrey’s first day of school. He was feeling good and very excited. Being the prepared Mom that I am, I brought the digital camera along to take a picture of Jeffrey on his very first day of third grade in his classroom. Oh he was looking sharp, let me tell you. I wish I could show you, but I got all the way there only to find out the batteries in the camera were dead. Good going Mom. Fortunately for me, Jeffrey’s friend Jake is in his class, and HIS Mom had a camera that worked. She promised to give me a copy of the picture. His teacher’s name is Mrs. Perry and she seems really nice. Jeffrey thinks she is “pretty”. :o) He was rather disappointed this past weekend when he found out his best friend Eliandro is not in his class this year. They have been together since kindergarten, but this year are in separate classes. He wanted me to try and switch classes for him, but I told him, unless we had a really good reason for it, I did not feel I could do that. I did tell him that if he went the first week of school and he absolutely could not stand it, we could talk about it more. So, he went to Mrs. Perry’s class, and he ended up really liking it. There are several kids in there that he knows pretty well, so he is now okay with the whole situation. He does get to see Eliandro during recess so that is good as well. He is glad school is going again and so am I.

This past weekend was not all that great for us. Jeffrey was inpatient for Ara-C and he was the sickest I’ve seen him this round. He and I were up all night on Friday, and I think we got about 3 hours of sleep. His stomach was really bothering him and he ran a fever during the night. He had lots of nausea and it was hard to control even with the Visteril. He finally fell asleep for a little while later in the morning (around 6 am, I think). He felt better when he woke up, and Dr. Griffin decided to let us go home. He was so glad.

That evening, Troy and I went to the Ranger’s game. It was something that we had committed to in advance (it was a work sponsored event). I was so tired from the previous night, but the game was neat. We had some really good seats and the Rangers won (6-5). Sunday was my birthday, but I felt so sleep deprived I really just did not have any energy. We went to church and then Troy took me to lunch at Macaroni Grill. It was good. Troy and Jeffrey got me a cake and a rose/crystal/candle holder. Jeffrey got me a little bear on his own from somewhere… It was cute.

Jeffrey started getting the GCSF shots on Sunday. It was kind of sad, he said, “It’s your birthday and it’s a shot day. That just doesn’t make any sense!!” It’s funny how kids think sometimes. He goes back to clinic on Friday to get his counts checked. I hope you all have a wonderful week.

Take Care & God Bless,
Chuson

Friday, August 13, 2004 3:53 PM CDT

Jeffrey is inpatient for Ara-C. We went in on Thursday and got the okay to proceed. They did not start the chemo until 8:30 pm. He got another dose at 8:30 this morning. He has had quite a bit of nausea and stomach pain today. He seemed to feel better in the afternoon. They will do a dose tonight at 8:30 pm, and then the last dose at 8:30 am tomorrow. Hopefully, we will be released shortly after that. We start the neupogen shots on Sunday, the 15th. Jeffrey starts school Monday, the 16th. I pray that he feels good all week. He is so excited about school. My big 3rd grader!! Next week we will go to check counts (no chemo – since he does not get the L-Aspariginase anymore).

Life is so funny sometimes. And I don’t mean funny, in a ha-ha kind of way. You never know what is going to happen. A friend of mine’s husband passed away on Tuesday. He was 37 years old, and he died of a heart attack at work. He was in good health and even played professional baseball for awhile. I was so shocked when I heard. I don’t even think there was any indication that he had any heart problems at all. It really made me think. Please say a prayer for my friend as she goes through this trial in her life. Life is so precarious, and you never know what will happen.

Pray for all our friends that are in the line of Hurricane / Tropical Storm Charley. I think they are getting the worst of it right about now. Pray for the safety of everyone there.

I will update more when I can.

Take Care & God Bless,
Chuson

I have in my hands two boxes,
Which God gave me to hold.
He said, "Put all your sorrows in the black box,
And all your joys in the gold."

I heeded His words, and in the two boxes,
Both my joys and sorrows I stored,
But though the gold became heavier each day,
The black was as light as before.

With curiosity, I opened the black,
I wanted to find out why,
And I saw, in the base of the box, a hole,
Which my sorrows had fallen out by.

I showed the hole to God, and mused,
"I wonder where my sorrows could be!"
He smiled a gentle smile and said,
"My child, they're all here with me."

I asked God, why He gave me the boxes,
Why the gold and the black with the hole?
"My child, the gold is for you to count your blessings,
The black is for you to let go."

Friday, August 6, 2004 10:52 AM CDT

Jeffrey went to clinic this past Wednesday. His counts were okay so they gave him VP-16, Cytoxan, and Messna (to protect his liver). He did pretty good. He threw up once at clinic. That projectile vomiting is no fun at all. But after that, he seemed to do better. He got his additional fluids and we got to leave around 2:30. It was actually a pretty quick visit. That evening he had some more nausea and slept quite a bit.

Jeffrey’s father is in town and well… Other than a few comments about the chemo he is getting, he has not said too much. He has brought him back at the times he is supposed to without too much argument. I still have a hard time when I think about him not giving Jeffrey his chemo, but I don’t know if that feeling will ever go away.

Jeffrey is scheduled to go inpatient for Ara-C on Thursday, August 11. This is the chemo that seems to be the toughest on him, so please pray that he gets through it okay.

Troy injured his hamstring Wednesday night playing softball. We went to the Emergency Room to make sure it was not torn. The doctor seemed to think it was an acute strain and not a tear. He went to his regular doctor yesterday and he is going to have to have physical therapy to help it get better. It is giving him quite a bit of pain.

That is about all that is going on here this week. A friend of ours is going to Iraq for 18 months. He is leaving August 16th. Pray for safety for our troops.

I will update again next week.

Take Care & God Bless,
Chuson

Please go by and visit this family. They are in great need of our prayers and encouragement. Connor has been through so much.

http://www.caringbridge.org/tn/connorhunley/

Monday, August 2, 2004 11:07 AM CDT

Hello everyone. Wow, is it August already? School starts in 2 weeks. I don’t know where the summer went.

Jeffrey went inpatient for methotrexate on Wednesday. They started chemo at around 5 pm. He had some nausea on Wednesday and Thursday, but started feeling better Thursday evening. They drew his level on Friday morning, and they came back okay. We were sent home that day after noon. Jeffrey and I went to IHOP for lunch and then just relaxed at home. He will go back to clinic on Wednesday for VP-16 and Cytoxan as long as his counts hold. Thank you to Gloria for coming and staying with Jeffrey on Thursday so I could get to work. I have no paid time off left and it is getting rather stressful thinking about finances on top of everything else.

Saturday we had a garage sale. It was the first one I have ever done. It was so hot and humid out, I was ready to shut down after 3 hours. But we did pretty well. I had a ton of Jeffrey’s clothes and toys that he had outgrown which sold pretty well. It was hard to get rid of some of Jeffrey’s baby clothes, but I am a pat rack and I really didn’t need to keep them all. I did pick out some outfits to hold onto. My mom came up that evening and spent the night. I drove her into Dallas to get her hair done at a Korean beauty salon and also did some shopping.
Sunday we went to church and then to lunch. That evening, we went to see I, Robot. It was a good movie. Interesting to think about what our future will be like.

Jeffrey is feeling pretty good this week. He is excited about school starting and I really hope he gets a good 3rd grade teacher. His previous teachers have all been so wonderful, so the bar is set really high! He is getting kind of restless as he is used to being more active, but we are at the break where basketball season is over, and baseball season does not start until September. He is ready to play baseball again.

Right after baseball season is when he will do the 3 weeks of radiation, along with steroids for that month, and weekly shots of Vincristine. Every time I look at that page of the protocol I cringe. Talk about a triple whammy. Vincristine, Steroids, AND radiation???? Wow.

I hope you all have a wonderful week. I will update more when I can.
Please pray for a cure.

God Bless,
Chuson

Thursday, July 22, 2004 10:45 AM CDT

Hi there! I hope this finds all of you doing well.
Jeffrey’s fluid is all clear!!! Yay!
Dr. Bowman called us at home last night to let us know.
It was a long day at the hospital. We got there in the morning, did a cbc to check counts. His counts were okay, so we headed over to the hospital by noon. It took them forever to get us in. He was scheduled to go in at 2 pm, which is the latest he’s ever had to go. Poor kid could not eat all day. They did not wheel him back to the OR until 3:15 pm. Afterwards of course, he felt so nauseated from the anesthesia/chemo that he couldn’t eat then either. I felt so sorry for him. We left the hospital at around 5 pm. He took a nap and just wanted to lay around. He started to feel better around 9 pm. This morning he is tired and his back hurts a little, but other than that he is fine. The good news is his fluid is clear and he is still in remission!!!!

Other than that there is not much going on. Jeffrey is scheduled to go inpatient for methotrexate next Wednesday.

Chuck E. Cheese was a lot of fun. Jeffrey calls it his Chuck E. Cheese birthday party, even though it was just the 3 of us. Jeff played a ton of games, and afterwards he got a Teenage Mutant Ninja Turtle… well, I guess it is a school supply package. It has pencils, an eraser, a pencil sharpener, little notebook, and pencil case. It was neat. He did not have enough tickets for it, but it was only a dollar more to get it. He was really happy about it, and he even wrote Troy & I a little thank you note for taking him there for his birthday. He is such a sweet kid.

I hope that you are all enjoying what is left of the summer. Jeffrey is excited about school starting again. I will update again next week after the methotrexate.

Please say a prayer for all the kids who are fighting their battles. Each child is unique and each one needs prayers and encouragement to get through.

God Bless,

Chuson

Monday, July 19, 2004 10:50 AM CDT

HAPPY BIRTHDAY JEFFREY!!!!!

I can’t believe it. Jeffrey is 8 years old today. Where did the time go????

Sorry it’s been so long since an update. Things have been kind of hectic around here (as usual). Last Wednesday, I took Jeffrey to clinic to find out that his counts had bottomed out due to the Ara-C. His ANC was 43 and he needed to be isolated for a few days. We also had to give the GCSF for 2 extra days. They told me to bring him back on Friday and they would recheck his counts. They came up by then so we had a relatively nice weekend, although I did want him to take it easy. His legs were covered with bruises from low platelets.
His birthday party was on Saturday. They did bowling and laser tag. It was a lot of fun. He did end up doing donations for the hospital instead of gifts, and he was happy about that. He wants to take the envelopes in himself instead of mailing them in.
He ended up with a few gifts still. He got Shrek 2 for the Gamecube and he also got one of those new video cartridges for the Gameboy Advance SP. It is Jimmy Neutron and is actually kind of neat.
Other than that there is not too much going on. It is so hot here in Texas! I think that because of all the rain we got in June, we will have an extended summer season. UGH.

Jeffrey is scheduled to go in on Wednesday for another spinal tap so that will be a long day at the hospital. Pray for clear fluid and no problems with the anesthesia like last time. This chemo protocol is really tough and is starting to wear us down tremendously. They keep saying that after his radiation treatments things will get easier. I really hope so. We are definitely ready for “easier”!!!

Since today is Jeffrey’s actual birthday, we are going to take him to Chuck E. Cheese (his choice) for dinner. :o)

School starts on August 16th this year. How exciting. Jeffrey keeps telling everyone that he is now a big 3rd grader!

I hope you are all having a good summer. I will update more later after his spinal tap. Thanks for checking in!

Take Care & God Bless,
Chuson

Tuesday, July 6, 2004 2:14 PM CDT

I hope you all had a safe and fun Fourth of July.

Well, Jeffrey made it back from camp at 11 am on the dot. The buses pulled in and we were anxiously waiting for him to get off the bus. He got off the bus all smiles. He had a GREAT time, but he said he was glad to see us. He could not stop talking about all the fun things he had done and even had a little notebook that he had written letters in to Troy and I every day about all the stuff he got to do. What a neat experience for these kids. He was nervous about going, but now he says he definitely want to go again next year. I am glad to have him home. I really missed having him around. His absolute favorite thing at camp was the ropes course, with the rock wall and zip line at the end. They went swimming, horseback riding, and canoeing. He did not get to do archery or cook out due to all the rain they got, but all in all, he had a wonderful time. He said the food was good and he made some good friends. One of the boys in his cabin came over to the car to say goodbye with his parents. I am glad he had such a good time. He deserved a break. It was a short one, but good for him.

When he got back on Friday, we went to lunch at Chili’s. We had some extra time to kill before our clinic appointment so we went to Border’s Bookstore. Jeffrey loves to read. He got some Boxcar Children mysteries while we were there. We got to clinic at 1:45 and they drew his labs and after the okay, we went over to the hospital to be admitted. They started his Ara-C at 6 pm. Unfortunately, Jeffrey got very sick this time around. He had lots of nausea and vomiting, and ran a fever most of the weekend. It got up to 103.3 and they drew labs for a blood culture. Nothing grew and his fever had gone down quite a bit on Sunday. He felt so rotten, I felt so sorry for him. They put hydrocortisone in his last 2 doses of the Ara-C so that seemed to help quite a bit. We told Dr. Bowman that he always runs a fever with the Ara-C and so he decided to let us go home on Sunday. We had to wait for Home Health to deliver his GCSF to the hospital since Monday was a holiday for most of us. We left the hospital around 2 pm. It was nice to be home, and Jeffrey seemed to feel so much better as soon as we got there.

I would like to say a special thank you to Troy’s older brother, Archer. Not only did he bring food (steaks and chicken) over to grill that night, but he had a special surprise for Jeffrey. Arch bought Jeffrey his very own set of golf clubs!!! Jeffrey is wanting to learn to play “real” golf so badly and has been talking about it for awhile. It was so nice! All Jeffrey could say was, “Wow!” over and over when he saw them. The look on his face was absolutely priceless. He got a golf bag, pitching wedge, putter, some irons, golf balls, tees, the whole set up. (Sorry if some of this terminology is not right, I am not a golfer.) Anyways, the cover for the driver has a tiger on it. Jeffrey really likes Tiger Woods (even though he is having a hard time this year). It was really something. The funny thing was, right before we saw him, Jeffrey was watching Tiger play golf. What an awesome gift!! After he gave the clubs to him, Arch took Jeffrey outside in the back yard and taught him how to use his pitching wedge. They were trying to “pitch” the balls into a Styrofoam cooler. Jeffrey got very close several times. He really loves those clubs. I walked into the room where they were and Jeff was standing there “petting” the bag. When I asked him what he was doing he said, “I just really like them Mom!” It was so cute. Then the next morning, I got up and came downstairs to see Jeffrey putting golf balls into a plastic cup with his new putter. He is so excited to have his own “real live golf set” (his words exactly). After cooking out, we drove to see some Fireworks. We only caught the last few minutes of the show, but it was enough. Jeffrey thought they were really neat, but he was very tired and ready to go home and get in bed.

The next day none of us had to work, Jeffrey wanted to play mini golf so off we went to do that. We went to dinner afterwards, and that was the end of our long weekend!

Jeffrey goes back to clinic this Friday to have his counts checked. He started the GCSF shots yesterday and will get them for 10 days. I will be glad when I do not have to stick him in the leg anymore.

I hope you are all doing well this week.

Take Care & God Bless,
Chuson

Monday, June 28, 2004 3:26 PM CDT

Hi everyone. Our weekend was pretty nice. Jeffrey was still anxious about going to camp, but we kept talking about all the great things he would be doing this week and it seemed to make him feel better whenever he got kind of scared about going. On Friday, we (Troy, Jeffrey, and I) went to see Garfield. It was a cute movie. On Saturday, we went to Jeffrey’ s friend’s birthday party at Fun Fest. They bowled and played laser tag. I did not play laser tag, but the boys did. They split the dads up to make it fair. Troy and Jeffrey were on the green team. They beat the orange team by about 17,000 points. Sunday morning we got up early and took Jeffrey to IHOP for breakfast. It is his favorite breakfast place to go. We got to the hospital around noon to sign in and check in his medicines for the week. He got a nametag and he talked to some of the counselors. I think they made him feel better about going. We took some pictures and were hanging out waiting for them to load up the buses. Jeffrey was on Bus 2 with boys the same age as him. He was still a little nervous, but Jeffrey never has been a really clingy kind of kid. He got on the bus without a fuss, and found a seat by a window so he could wave to us. Everything was going just fine, until another little boy on his bus got upset and started crying really HARD. He got so upset they took him off the bus for a second so he could talk to his Dad. I think this upset Jeffrey and I couldn’t tell for sure, but he put his head down on his arm and I think he was crying. It was just for a minute though, and after that minute, he was back to waving to us. He must have waved to us for the entire 20 minutes or so that the buses stayed there after the kids got on. It feels really strange without him here… The house is so quiet and I really feel like I am missing a limb or something. I know that I should be using this time to rest and do some things for myself and I’m going to, but I still miss my baby (Yes, Troy, he is still my baby!!!!) Baby or not, Jeffrey will be turning 8 in 3 weeks. I don’t know where the time went. He says he does not want gifts this year. We are doing a bowling/laser tag party and instead of gifts he says he wants people to bring donations for the hospital in his honor so to speak. I am not sure how to set that up, but I know Cooks does a thing called the Peter Pan Birthday club where kids can do that. I am going to try to find out some more information. I am proud of him for doing that. He is a good kid and never ceases to amaze me. Well that is all the news for now. He will be coming home on Friday. We will go inpatient for Ara-C that day. I am hoping his counts will be okay for his birthday party.

Take Care and Have a Great Week!

Chuson

P.S. I don't know if you all still look at the pictures, but I did update them with some new ones from Mother's Day.

Tuesday, June 22, 2004 4:58 PM CDT

Hi there! Jeffrey went in to clinic this week for VP-16 and Cytoxan. This is some nasty stuff. He starts to feel badly as soon as this stuff hits his system. They want him to drink water to flush out his kidneys and liver, but it is really tough for him to keep anything down. He had nausea and vomiting for most of the day. That evening he felt a little better and wanted to go out to his basketball game. I was rather hesitant in letting him go, but he insisted. He has missed all the games so far this season, so I relented and off we went. He did fine, you could tell he was tired, but he said he had a good time afterwards. Today he is feeling tired, but he said he felt fine otherwise.

This past weekend was a good one. Friday night, Troy & I had a softball game. It was fun and we ended up winning. Saturday, we went to a wedding. It was really nice. The ceremony and the reception were both well put together. We left the reception around 9:30 or so because Jeffrey started to not feel well again. Jeffrey had a lot of fun though because many, many people from church were there and he gets loved on and spoiled by them all.

For Father’s Day we took a little road trip to go and visit Troy’s dad. The drive is 3 hours one way, and we only visited for a few hours, but that pretty much took the whole day. It was nice to see his parents and Troy had not been out there in a while. On the way home, Jeffrey said that his “bottom was tired”. It was very funny.

Jeffrey leaves for camp this coming Sunday. I don’t know what I am going to do with myself while he is gone!!! I am not used to him being away. He will be gone for 5 days. The day he gets back, he is scheduled to go inpatient for Ara-C. We are hoping to get to leave the hospital on the 4th of July early enough to find somewhere to watch the fireworks and celebrate a little, but of course that all depends on how Jeffrey is feeling. It is kind of a hectic schedule and unfortunate that he will have to go to the hospital immediately upon returning, but I did not want him to have to miss out on camp. His Ara-C is being postponed a few days so that he can go with the other kids. Life with cancer is a very complicated juggling act.

Other than that things are fine. I will try and update more next week. I will be missing Jeffrey, but hoping that he has a great time. He is a little nervous about going to camp (he has never been), but I thought it would be a good experience for him.

Take Care & God Bless,
Chuson

Thursday, June 17, 2004 2:36 PM CDT

Hello everyone. Thanks for checking in. Things are pretty quiet this week (yay). After last week’s scare I am glad for it. On Friday, we got to clinic and they drew several vials of blood to run tests on (It seemed like so much blood to come out of such a small kid!). Troy took the afternoon off to come to clinic with us and we played the waiting game for about an hour for his results to come back. Dr. Griffin came in and said, “He’s fine,” immediately. I was so relieved. He said that the immature cells he had seen from Monday’s labs had all pretty much developed into healthy mature cells, and the abnormalities were more than likely to be from the neupogen (GCSF) shots.

Our weekend was a lot of fun. It was probably one of the nicest that we’ve had in awhile. We were not running around trying to get somewhere and had time to do some fun things. A few weeks ago, the sermon at church was about how sometimes routines and life stops you from having fun and noticing and making time for the things that really count. Sometimes it is good to be child like (not to be confused with childish *grin*). There were suggestions on how to get back a little bit of what it was like to be a child. One of the suggestions was to play hide and seek. So that is what we did Friday night. After dinner and running to Blockbuster, we went back to the house and played hide and seek. Now, I was not that good at this game as a kid, and believe me when I say I am not much better now. Troy & Jeffrey, on the other hand, are great at this game. Jeffrey can hide and if you come near him, doesn’t make a peep. I can’t help but giggle if you get even near me, but not him. The three of us had a lot of fun playing this game. Saturday, we went to a friend’s little girl’s birthday party. It was at the park and they had a bounce house, relay games, and a piñata. Jeffrey had a blast. After the party, Troy set up the swimming pool in the backyard for Jeffrey to play in. We ended up having a huge water fight in the backyard and we all got soaked. I somehow ended up with the only working super soaker (ha) and only got soaked after they ganged up on me. Sunday we went to church, lunch at El Chico’s, and then finally got to see Shrek 2. It was very funny. So all in all, a very nice weekend.

Jeffrey and I got to clinic on Monday morning. Did a cbc, got the okay, and were sent over to the hospital. His ph level was low, so they could not start his chemo. They hooked him up to fluids and we got settled in. They were not able to start his chemo until 6 pm. He had some pretty bad nausea on Tuesday, but by Wednesday, we were ready to bust out of there! His methotrexate level came back okay, and they released us at about 2 pm. The hardest part was finding a pharmacy that had the leucovorin available.

Not much else is going on over here. It is getting very hot here in Texas. Summer is definitely here!

We go back to clinic on Monday. I will update more after that.

Thanks for checking in.

Take Care & God Bless,
Chuson

Thursday, June 10, 2004 10:42 AM CDT

New Mini Update June 11, 2004 10:45 p.m.

We took Jeffrey to clinic today and his tests came back fine!!! Yay. Thanks for all the prayers and I am so very relieved. Will update more after Monday's clinic appt. We are due to go inpatient for methotrexate. Have a great weekend!!

I UPDATED THE PICTURES FINALLY!!! Go by and take a look!!!

_______________________________________


Hello everyone. I hope this entry finds you all doing well and hopefully dry. We have had so much rain in the past few days I am wondering if we should look into investing in an ark. Ha ha. Anyways…

Before I get into any medical updating, I want to say……

CONGRATULATIONS TO TROY!!!!!

He got the letter in the mail this past Saturday telling him he passed his Professional Engineering Exam!!!! Wooo hooo!! We are very proud of him.

Jeffrey had a pretty rough spinal tap day on Monday. We got to clinic and the nurse who did his finger stick was not used to doing it and had a ridiculously tough time getting the sample. It took her 10 minutes to fill the small vial, and of course it clotted by the time it got to the lab. *sigh* So, he had to have another stick done. I very politely requested that another nurse do it. We had to wait for those results to come in and then we were over an hour late getting to the OR for his procedure. The versedt they give him before they take him away to the OR makes him very emotional. He started crying and saying he wanted me to come in the OR with him. Of course, that is not possible, but it is very hard to hear your baby crying and so afraid. He does not even remember being that way (effects of the versedt), but I sure wish they could slip me something that would make me forget as well sometimes!!! Afterwards, they took longer to call me back to the recovery room, because he took longer to wake up (makes me nervous), and then when I did go back there, he was having problems breathing and his throat was really raw and hurting for some reason. His voice was extremely raspy and he was crying from the pain. Also his oxygen saturation was holding at around 86-90 and that was making me nervous as well, especially since that dang alarm goes off every time it dips below 90. Things got better after awhile with his throat. We got him dressed thinking we could leave, and then he started throwing up. He was feeling so rotten, he was insisting that he stay there at the hospital. He also requested that the doctors come and take a “picture” of his throat [I’m thinking he meant x-ray or sonogram]. Finally, I go and get the car, pull around to the surgery pick up, and he is throwing up again and wants to go back upstairs to the hospital bed. It was an ordeal to say the least. By the time we made it home, we were both exhausted. Poor Jeffrey, sometimes he just can’t get a break. He took a long nap when he got home (so did I).

I have a prayer request. Jeffrey’s doctor called me on Tuesday and told me that Jeffrey’s spinal fluid looked “okay”, BUT (always gotta have that but in there) some immature cells have shown up on Jeffrey’s blood smear. Now, he said not to panic (yeah right) because the neupogen can sometimes cause this to happen. But they want to check him again because if there is some activity going on in his marrow, they want to catch it as soon as possible. Suffice it to say, I did not sleep Tuesday night. It may be absolutely NOTHING at all, but he is going back to clinic tomorrow. I have gone over all his count sheets for the past two years and his white count has never gotten as high as it was last Monday (even when he was on steroids or neupogen before), so that is making me rather nervous. Please, please pray that it is nothing. I feel like it is going to be nothing, but there is always that little nagging worry in the back of your mind that says, well what if it is something? A thank you to Jan (Colin’s mom - http://www.caringbridge.org/wi/colin/) for easing my mind a little. I emailed her in a panic on Tuesday. Colin & Jeffrey are on the same protocol and are the same age, and Colin has had this happen before. It ended up being nothing for him. Thank God!!! These kids go through so much!

Please go by and visit a beautiful little girl named Meghan. She relapsed recently and is having a hard time with tumors on her spine. She loves to read her guest book and could use some encouragement (can’t we all???). Even though you may not know us or the other people you visit on Caringbridge personally; a kind word, or just knowing that someone cares can be enough to get us through a hard day.

http://caringbridge.org/il/megsdiary/

Until next time,
Take Care & God Bless,
Chuson

CANCER SUCKS all day, every day.

Wednesday, June 2, 2004 1:56 PM CDT

Hello everyone. I am overdue for an update. Sorry.

Let’s see… we went back to clinic last Monday and Jeffrey’s platelets had gone down to 38,800. Low, but not low enough for a transfusion. His white counts were holding steady and so was his ANC. We were told to come back on Thursday to recheck his counts to make sure his platelets didn’t get worse. Well, by Thursday I knew he was going to need platelets. He had petechiae all over his chest and neck. The spot on his leg where I had given him his GCSF shot the night before had a huge bruise. His counts came back with his platelets at 8,300 (YIKES). His white count at 500, and his ANC was a whopping ZERO. *sigh* I asked them why he was taking so long to rebound this time, and they said that his marrow is just getting too tired to produce what it needs to. The nurse said that he has been getting the chemo for so long now and that his marrow has been working overtime for so long, that it is just getting too tired to do the job. Basically, there is nothing we can do about it. The really scary thing is that there is a blood shortage in this area and Carter Blood Care had to send platelets over. It took 5 hours for them to get it there. What if it had been an emergency and he needed it immediately!!!!???? I cannot stress how important it is for people to donate blood. Please, if you can, donate!!!

Anyways, we got the platelets, and left the clinic around 3 or so. After that, we were told to go straight home and Jeffrey was to be isolated all weekend long. As Jeffrey said, “This is not how I planned my summer vacation to be.” Poor kid. He ran a low grade temp all Friday and some of Saturday. We stayed home pretty much the whole weekend. GCSF shots were extended through the 31st. Dr. Griffin said that his counts should start rebounding by Sunday or Monday, so that as long as we weren’t trying to do too much we could get out and about a little. (Not anywhere crowded though). We went back to clinic yesterday, and his counts rebounded a lot. His platelets are back up to 150K and his white count was at like 13,000. So I guess the GCSF finally kicked in! So I am back to work today (after being off since Thursday) and hopefully the remainder of the week will be good.

He goes in next Monday for a scheduled spinal tap. I am nervous. Please pray for clear fluid.

We had a horrific storm last night here in Texas. The winds were blowing at 80 mph in some places and there was hail and lots of heavy rain. A tornado touched down in a couple of places. Jeffrey was very frightened. I had just put him to bed when it started getting bad, and I made him come downstairs and we got into the storage room in the middle of the townhouse. The tornado sirens had gone off and the winds were blowing so hard, it even frightened me a little! The winds were blowing so strongly against the windows, I was concerned that they might break. We were lucky and did not lose power like so many others here did, and I heard on the news that there were 8,000 lightning strikes in the area, including Love Field airport in Dallas. The rain has lowered the temps a little, and we are supposed to get more rain this evening, but hopefully not as bad as last night! Jeffrey ended up sleeping with me (just in case – as he says).

Jeffrey’s last day of school was last Wednesday. He is very sad that the 2nd grade is over. He misses his teacher, Mrs. Oakley, very much. He had a really great support system at school this past year (and all the years before). His school is GREAT. Jeffrey made the A Honor roll all year long. His grades dropped in the last 2 grading periods, but not below a 90. I think he has done wonderfully considering all that he has been through and all the days he has missed. I am so proud of him.

Well that is all for this week. Hug your kids and loved ones tight. I hope you all have a wonderful week.

Cancer sucks.

Take Care & God Bless,
Chuson

Monday, May 24, 2004 1:47 PM CDT

Hi there! I hope this update finds you all doing well.

Jeffrey got to leave the hospital on Thursday. We ended up having to stay an extra day due to the fevers. They wanted to make sure there were no infections, etc. causing him to run the fever. They gave him a couple doses of antibiotics just in case, and his blood cultures all came back negative. I figured the fever was just because of the Ara-C, but they wanted to be cautious. The Ara-C really makes his stomach hurt and we of course started the lovely neupogen shots on Thursday. I am so proud of Jeffrey. He is doing really well with the shots. He is so brave. He holds on tight to Troy and holds a washcloth over his face so he cannot see the needle and holds very still until it is done. The neupogen burns when it is going in and he tells me when to slow down or wait a second, but other than that, it is not a horrible ordeal like before. I guess what the home health care nurse told me in the beginning was true, we got used to it. How sad. I still can’t stand giving it to him, but at least we have gotten into a routine that works well for us. I guess at this point it is making the best of what you have.

Saturday, Jeffrey fell off of his scooter. Twice. The first time he skinned his left leg. The second time his right. Those wounds, plus his bandaids from his neupogen shots make his legs look like a war zone. I hope his counts are okay when they check them today… He is definitely all boy. We got him a new bicycle on Saturday as well. He has outgrown his old one. His knees were hitting the handlebars. So off to Target we went. He picked out a bike that to me, looks HUGE. But he absolutely loves it. Him and Troy rode around the block for awhile on Saturday. Also, I bought him knee pads and elbow pads for when he rides his scooter and bike. He already had a helmet… but after all the falling down this weekend, I figured I’d better invest in the pads also.

This week and next week are just CBC weeks. I am kind of glad for the break. His appointment today is not until 3:45 pm. The week after is spinal tap week. Those weeks make me very nervous these days. Please pray for clear fluid and continued remission.

A year ago, I was thinking that for Jeffrey’s end of treatment it would be nice to go back to Disney World. He absolutely LOVES that place and is always talking about going back. He would have been done this October. Now this October, he will be going in for his 2 weeks of radiation with another year of treatment after that. I just don’t understand it.

Cancer Sucks. Every day, all day.

Chuson

Tuesday, May 18, 2004 9:07 AM CDT

Hello everyone,
Jeffrey is inpatient for Ara-C and will hopefully get to leave the hospital some time tomorrow. We have been here since yesterday. However, as of this morning, he is running a fever, so am not sure where that is going. More than likely it is just because of the Ara-C and they will still let us go home.
Jeffrey had a rough night. He was throwing up and just not feeling well late in the evening. Then he was up and down all night long. I am so tired today.
I am not looking forward to giving him the neupogen shots again.
Dr. Griffin says he will not be getting the Aspariginase in any form. He had such a bad reaction last time - the E Coli Aspariginase is definitely out. He has to research it some more and get back to me, but Jeffrey may get a two week break from chemo in between Ara-C treatments and neupogen shots for a little while at least. But once again that is a catch 22. Glad that he's not getting stuck in the leg (the shots are painful) and won't be sick from it, but then worried about him not getting it... *sigh* What do you do?

Anyways, hope you are all doing well. I will try to update more later.

Take Care & God Bless,
Chuson

Tuesday, May 11, 2004 10:58 AM CDT

Hello out there! I hope this entry finds you all doing very well. I am sorry for the delay in updating. Things are crazy around here and well, yesterday, I just did not feel like updating.

First of all, to all the mothers out there, I hope you all had a wonderful Mother’s Day. For those of you who faced Sunday minus a child and for those of you who have lost their mothers, my heart goes out to you. May God Bless you and bring you peace.

We have had a wonderful week. Jeffrey went to clinic the past 2 Mondays and was okayed to get his chemo both times. He got it without any complications. Last Tuesday, he had some burning while urinating (anyone else ever have that happen????), but it went away after that day. The doctors thought it might be the beginning of a bladder infection, but it wasn’t… so not really sure what that is all about. Jeffrey is really starting to show the effects of the steroids. He has gained almost 8 pounds total in the past 3 weeks. He gained almost 3 in the past week. We still have one more week of steroids to go. His face has really filled out and so has his belly. The port accesses continue to go really well. I am glad that we found something that works. :o)

On Friday, Troy surprised us with a picnic to the park. The weather was perfect and we really enjoyed it. At this point anything that involves food is on Jeffrey’s Top Ten list of fun things to do!!! After that we went home and watched The Haunted Mansion that Troy had picked up after work from Blockbuster. The last 2 times we tried to rent it, it was all gone. Jeffrey really enjoyed it and he just laughed and laughed at the preview about The Incredibles. Saturday, I went and helped set up for a Habitat for Humanity event called the Toolbox Bash. Troy and Jeffrey hung out while I was gone. Then I met them at the ball field for Jeffrey’s baseball game. My mom came up for his game. Afterwards, we all went home and my mom made us a GREAT lunch. That night we went to the Toolbox Bash. They had dinner, a silent auction, and lots of games for the kids. Every time you played a game you got your ticket punched and at the end of the evening you could cash in your tickets for a prize. My mom got a picture and Jeffrey got a bunch of odds and ends in a goodie bag. It was fun. Sunday we all went to church and then to lunch at Red Lobster. It was nice. It was a fun filled weekend. Jeffrey woke my mom up reeeaally early Sunday morning to get her to help him cook me breakfast. It was really sweet. Lately, he has been getting up and fixing me a bowl of cereal, but Sunday, I got eggs and the whole deal. :o) I also got a really nice card and gift from him. He earns points at school called Accelerated Reader Points. After you read a book on the list you are tested on it. If you pass, you earn points. Then when your points accumulate, you get to go to the AR store to cash in your points. My sweet son used his points to get me a little plaque that says, “Little girls come from Heaven”. He also had made a picture frame at school which he wrapped and gave to my Mom. Troy also gave me a very nice card and gift. It was several candles that you place on a round stand and then pebbles go around the candles. I am not sure what it is called… So as you all can tell, I had a pretty good weekend.

Jeffrey goes back to clinic on the 17th. As long as his counts are good, he will be admitted for 3 days for Ara-C. Which of course, means we will be once again giving the GCSF (neupogen) shots at home. Yuck. Please pray that we get through next week without any problems. Jeffrey tends to run fevers with the Ara-C.

On a sadder note, I would like to ask that you all pray for a little boy named Connor Hunley. His scans have shown that the cancer has returned once more. He is a little boy that I check on often and he has just been through so much. Pray that his parents have strength to get through this, and that God grants Connor his miracle here on Earth. Go by and leave them an encouraging message. You may not think that you can do much, but even showing that you care can be so uplifting!

http://www.caringbridge.org/tn/connorhunley/

Take Care & God Bless,

Chuson


P.S. I know that many of you probably have already seen this, but I like it...


Somebody Said…

Somebody said a mother is an unskilled laborer.
Somebody never gave a squirmy infant a bath.

Somebody said it takes about six weeks to get back to normal after you've had a baby.
Somebody doesn't know that once you're a mother, "normal" is history.

Somebody said a mother's job consists of wiping noses and changing diapers.
Somebody doesn't know that a child is much more than the shell he lives in.

Somebody said you learn how to be a mother by instinct.
Somebody never took a three-year-old shopping.

Somebody said teachers, psychologists and pediatricians know more about children than their mothers.
Somebody hasn't invested her heart in another human being.

Somebody said if you're a "good" mother, your child will "turn out".
Somebody thinks a child is like a bag of plaster of Paris that comes with directions, a mold and a guarantee.

Somebody said being a mother is what you do in your spare time.
Somebody doesn't know that when you're a mother, you have no spare time.

Somebody said "good" mothers never raise their voices.
Somebody never came out the back door just in time to see her child wind up and hit a golf ball through the neighbor's kitchen window.

Somebody said you don't need an education to be a mother.
Somebody never helped a fourth grader with math.

Somebody said you can't love the fifth child as much as you love the first.
Somebody doesn't have five children.

Somebody said a mother can find all the answers to her child-rearing questions in the books.
Somebody never had a child stuff beans up his/her nose.

Somebody said the hardest part of being a mother is labor and delivery.
Somebody never watched her "baby" get on the bus for the first day of kindergarten.

Somebody said a mother can stop worrying after her child gets married.
Somebody doesn't know that marriage adds a new son or daughter-in-law to a mother's heartstrings.

Somebody said a mother's job is done when her last child leaves home.
Somebody never had grandchildren.

Somebody said being a mother is a side dish on the plate of life.
Somebody doesn't know what fills you up.

Somebody said your mother knows you love her, so you don't need to tell her. Somebody isn't a mother.

Friday, April 30, 2004 11:27 AM CDT

Sorry for the delay in updates. Jeffrey went to clinic and his counts had improved, so he got both the Vincristine and the Daunorubicin. He is still on steroids and it is really starting to get to him. His face has a constant flush to it, and the other night he had a little emotional outburst. He stated that he was so tired of taking all this medicine, and tired of his stomach hurting all the time, and he was tired of having to go to the doctor every week. And why couldn’t he just be normal like all the other kids? He has had a couple bad headaches this week and other than the normal side effects of the Vincristine and Dauno he is doing well. Dr. Griffin says we can start weaning him off of the steroids in 2 weeks. I can’t wait.

There is no school on Monday, but Jeffrey still has to go to clinic. His appt is not until the afternoon this week, so maybe we will try and do something fun before it. Only 3 more weeks of school left for the kids here. Jeffrey will officially be a 3rd grader. Where did the time go? I have no idea. The other day I pulled out some old pictures of Jeffrey. I found some from the day he was born. He was tiny and I look so young!

There is really not much else going on here. Jeffrey goes back to clinic on Monday for another round of Vincristine and Dauno depending on his counts.

On a side note, I finally found a way to get Jeffrey to hold still during his port access. He had been fighting it lately, because his port area is sore due to it being accessed so often. So he gets anxious and works himself up and then cries and won’t hold still for the stick, which then often times results in having to be stuck twice. I bought three Ninja Turtle action figures (which he absolutely LOVES) and showed them to him. Then I told him he could open one if he tried his very best to hold still during the poke. Yes, I am bribing him, so sue me. It worked. It is worth every penny to not have to hold him down while he is crying and accusing everyone of hurting him. I reminded him before she started cleaning his port of the action figure waiting for him at home, and then… he closed his eyes tight, grabbed my hands really hard, AND DIDN’T BUDGE AN INCH while she put the needle in. There was a tiny bit of hyperventilating involved, but not nearly as much as normal. It was the easiest port access we’ve had in over a month. He said it hurt a little, but he tried his best. He did GREAT. The nurse thought it was a great idea and called it a “reward system”. But even I have to admit, if it looks like bribing, and smells like bribing, and feels like bribing, well… it’s bribing your kid. Which I’m sure is somewhere on a list of tactics of bad parenting. Oh well. I’m sure whoever wrote that list out never had to hold their kid down kicking and screaming while they were having needles poked all over them on a regular basis and had to endure them looking at you with big fat tears in their eyes asking you why you were letting everyone hurt him? So I only have 2 action figures left in the “reward” box (a.k.a. bribe box) and I’m not sure where we’ll go from there, but hey, at least we get a 3 week reprieve.

Until Next Week...

Take Care & God Bless,
Chuson

Wednesday, April 21, 2004 12:39 AM CDT

Hello everyone! Thanks for checking in.

Jeffrey is doing well. We went to clinic on Monday for chemo. His counts were not that good, so he went ahead and got the Vincristine, but no daunorubicin. He also started the dreaded steroids. I hope we get through this month without too many mishaps. He will be reassessed next week to see if he will get the daunorubicin. It was the fastest clinic visit we have had in MONTHS!!!

Out next clinic appt will be on a Tuesday because Jeffrey has a school field trip on Monday that he really wanted to go to. Dr. Griffin said it would not be a big deal to push the chemo back one day. After that we will go back to the Monday schedule. Jeffrey was very happy to hear that he would be able to participate on the field trip.

Jeffrey had baseball practice last night. It was super windy, but he had a good time. They won their first game this past Saturday. The boys played really well. After the game, we went and picked Troy up from the airport and then headed out to Troy's company picnic. It was out in the country (we live in a big city) and Jeffrey got to fish and ride a horse. He really enjoyed himself. The horse he was riding would often stop to grab a bite of leaves off the trees and Jeffrey would just laugh and laugh when she did that. Sunday we went with some friends of ours for their little girl's dedication at their church. Afterwards, we tried to relax for what was left of the weekend. We are glad to have Troy home and be able to see him more now that he is not studying for his test!

Jeffrey will be going to the dentist on May 12 as long as his counts hold out. I am concerned as he has been missing some teeth for quite a while and no new teeth have grown... I know chemo can do "wonders" (sarcasm) for your teeth, so I hope everything is okay, although, I have to be honest, if that is the worst side effect he comes away with then yippee. Dr. Griffin said take him to the dentist and have them take an x-ray to see if the teeth are even there... We'll see.

Well, I hope you are all doing well. Pray that they find a cure to this awful disease. I keep hearing of children relapsing and it just makes me so sad...

Until next time, hug your kids close and never take a moment for granted!

God Bless,
Chuson

Wednesday, April 14, 2004 2:58 PM CDT

Hello everyone. I hope you all had a wonderful Easter. We did. Saturday morning Jeffrey and I got up reeeeallly early and went with some others from the hospital to Camper Scamper. Which is a 1 mile fun run to raise money for Camp John Marc kids (cancer kids camp). Jeffrey is thinking of going to camp this summer (since he will be here all summer) and he wanted to help raise money for it. Camp Sanguinity (the camp for Cooks) had the most campers out there and now have bragging rights and a big party waiting for them at camp! It was lots of fun. There was quite a bit for the kids to do besides the race. It was fun. That afternoon/evening we went to help my brother celebrate his birthday. We went to Dave & Buster’s. It was a lot of fun, but I was definitely ready for bed that night!

Sunday we got up and went to Easter services. Then afterwards we went home and relaxed for a little while. Then we went over to some friends for an Easter Egg Hunt. It was really neat. They live in a woodsy area, so the egg hunt was challenging for the kids. The kids all went upstairs to watch the Easter Promise first while the parents hid the eggs. They also had special resurrection eggs so they could do the Easter Story with the eggs and the kids afterwards. I love the way they do that story with the eggs. Then we all ate some great grilled chicken with lots of good sides. It was really nice and Jeffrey had a wonderful time.

Monday, we got to clinic really early. ANC was about 650 so they went ahead with the spinal tap. We headed over to the OR and he had the procedure done. They called me back to the recovery area where he was doing fine. I was a little concerned because when they gave him the versedt before they took him back he was really emotional and started to cry. It made me feel really bad, but I was relieved when I saw him doing fine. There was quite a scare though, when the little girl across from Jeffrey stopped breathing. It was upsetting me even though it was not my child, so I cannot imagine how the mom was feeling. She looked to be about 3 years old and I do not know why she was there, but there was a big rush and they pulled all the curtains to prevent anyone from seeing what was going on, but I could still hear all the machines, etc. because we were so close to her. Thank God they got her to start breathing again. That is the first time anything like that has happened while we were there. Tuesday, we had to go back to the hospital again for an echocardiogram. Starting Monday, he will again be getting the daunorubicin, which can be very dangerous for the heart so they wanted to see how his heart was doing. He has already had 3 doses of this chemo and he is scheduled to get 3 more. After that, I don’t think he is able to get anymore due to the damage that can be caused. There is a limit to how much these kids can get in their lifetime. I am anxious to talk to the doctor to see if there were any changes in his echo results from when he had one in November. I hate thinking about what all these medicines are doing to him on the inside. Everyone always says he seems to be doing so well and he looks so good, but the truth is, the inside of him is what is being affected the most. It’s really quite scary if you think about it too much…

Well, we go back to clinic on Monday and as long as his counts are good, he will get Vincristine, Daunorubicin, and he starts steroids. Please say a prayer that all this will go smoothly and Jeffrey will not feel too badly during this next month of steroids.

Please pray for Troy. He is taking a very important exam on Friday… He is flying out of town this evening and will be returning on Saturday. He has been working so hard this past month studying to prepare and he has a lot going on at work as well, so this has not been an easy month for him.

I appreciate all of you who come and check on us regularly. It means a lot to me to know there are so many people praying for Jeffrey. I will update again after chemo or if I hear results about the echo.

Take Care & God Bless,
Chuson

Tuesday, April 6, 2004 2:23 PM CDT

Hello to all! :o)

I hope this update finds you all doing well. We went this past Monday for VP-16 and Cytoxan. It was a long day. We got there at 8:30 am and did not leave until 4:30 pm. Jeffrey's counts were fine, so they started his chemo around 11 ish. This stuff makes him pretty sick, so he wasn't feeling well at all by 2. He threw up all the Chik-Fil-A that our friend Scott brought for us for lunch, and laid down for the remainder of the time we were there. He is feeling a little better today though. We go back to clinic on the 12th for another spinal tap. Pray for clear fluid! If all goes well, we move on to the next phase of treatment, which includes 4 loooooong weeks of steroids. God give me patience!!! :o) I hope that he does not get too puffy and achy. He is attempting to play Spring Baseball and it breaks my heart every time I think of how bad he will feel if the chemo runs him down too much to play. Hopefully, I will be able to limit his intake of salty foods, etc. and try to help him through this next month smoothly. After 4 weeks we go back to the Ara-C and the detested neupogen shots.

We had a good weekend. We went to Home Group (bible study) on Sunday. It was hosted by a woman named Kelly, who is a wonderful cook and hostess. Her house is so beautiful. It has a pool out back that is non-chlorinated and is oxygenated (is that the correct terminology?). It was so nice. Jeffrey got to swim with a bunch of other kids (the pool is heated) and had a blast. He did not want to leave even after it got dark. It was nice to get together and socialize with others from my church. They are really a wonderful group of people and they are just all so very nice!

I hope you are all having a wonderful week. It is rainy and gloomy here in Texas, but we are doing well in spite of it!

Take Care & God Bless,
Chuson

Friday, April 2, 2004 11:54 AM CST

Hi everyone. Jeffrey is doing well. We were admitted on Monday for IV Methotrexate. His ANC was 496, but they went ahead with chemo since he was only 4 under the required 500, and his blood showed that more white cells were in the process of developing so felt it was safe to go ahead with it. They did not get his chemo actually started until 7:30 pm. We left the hospital about 4:30 on Wednesday. It was a looooong day. He was throwing up earlier that day so they were debating on whether or not to let us go home, but we convinced them we would be fine.

He has gone to school the last two days and is doing well this week. Baseball season starts next week, and well in a couple weeks, so does his month long steroid pulse. Hmmm… not sure how good of a combo that will be. What timing. I hope he is not too hard on himself because I know the steroid/vincristine combo will affect his joints and his ability to play ball. I know that in the big scheme of things that is not that big of a deal, but sometimes it seems like the little things like this bother me so much! Cancer totally sucks.

Did I tell you we went and saw Scooby Doo 2? It is very funny. Jeffrey laughed and laughed through the whole thing. We had a good time.

Monday we go back to clinic for VP-16 and Cytoxan. It will be another long clinic day. We are normally there all day when we go in for this.

Well that is all the news for now. I will update again soon.

Have a great weekend!

Take Care & God Bless,
Chuson

Friday, March 26, 2004 2:11 PM CST

Trust in the Lord with all your heart, and lean not on your own understanding;
In all your ways acknowledge Him, and He shall direct your paths.

Proverbs 3:5-6

The Lord himself goes before you and will be with you;
He will never leave you nor forsake you.
Do not be dismayed; do not be discouraged.

Deuteronomy 31:8

For I am the Lord, your God,
Who takes hold of your right hand and says to you,
Do not fear; I will help you.

Isaiah 41:13

Fear… what a nasty feeling. God says repeatedly in the bible “fear not” for I am with you, for I will uphold you, for I will not fail you… And yet, as humans, we are often so afraid. There is one thing I think is worse than fear, and that is hopelessness.

I check on the Caringbridge Kids with dread these days. Several are not doing well and have been told there is nothing left to be done. Several have been sent home on hospice. These parents are told to take their children home, because there is nothing left to do. What a world we live in to lose so many children to such a horrible disease. People say we have come so far in the last 20 years. I say we are still losing. People say so many children survive this disease now. I say talk to the families of the ones that do not. People say, childhood cancer is so rare. I say, not from where I’m standing. Come visit 3 North or the clinic on any day of the week and it will be full. Every day of the week, it’s FULL. I do not even know what I feel these days. Everywhere I turn another child is growing their angel wings. And the worst part is the fear. You cannot prevent it, nothing you do makes you untouchable, and you never know when or if it will happen. We try to live our lives as normal as possible, but that fear is still there. We wrap it up and tuck it away in a place that sometimes, we can even forget it’s there. But then something happens, and we pull it out and look at it again. It just doesn’t seem fair. Please pray for these children and their families.

http://www.caringbridge.org/ar/savannah/

http://www.caringbridge.org/page/jakegriffin/index.htm

http://www.caringbridge.org/va/maxie/

On a lighter note, Jeffrey’s spinal tap fluid came back clear. Thank the Lord. No spinal headache complications this time around either. He went back to school on Tuesday and has been there all week. He is having a good week, and therefore, so am I. We go back Monday for a 3 day admittance for IV Methotrexate. Cancer Care Services gave us some tickets to go see Disney’s Monster’s, Inc. on Ice. So Jeffrey and I went this past Sunday. Jeffrey enjoyed himself greatly. He thought it was really neat. I do not know how they skate around with those huge costumes on. Thank you to Cancer Care.

Thank you all for checking in. I promise to try and not be so gloomy next time around. It is rainy and cloudy here in Texas so that is probably attributing to my mood. It is so sad to see all these children going through so much. Parents should not have to bury their children. Please pray that a cure is found. Please pray for peace for the families who have lost loved ones. Please pray for complete healing for Jeffrey. Sometimes I get so afraid about everything that I see around me that I feel like I cannot breathe. But in the end I am grateful that we are here and able to fight.

Take Care & God Bless,
Chuson

Tuesday, March 16, 2004 4:09 PM CST

Hi everyone! Thanks for checking in. I hope this finds you all doing well.

It seems like every time I get on here, I hear about another child relapsing or passing away. I have not been online all weekend or yesterday, and today, I hear that Abby Allies passed away. Her parents are so full of Faith it is amazing to me, and even now they are sad that she is gone, but joyful that she is in heaven with Jesus dancing in the sunshine, no longer fighting cancer, no longer suffering from pain. I admire them greatly. She was only a year older than Jeffrey and it just makes me so sad.

http://www.caringbridge.org/va/abbyallies/

Jeffrey went to clinic yesterday for VP-16 and Cytoxan. It was a loooooong day. We got there at 8:30 and did not leave until 5. They hooked him up to his chemo and 20 minutes later he was throwing up. I'm not sure why it hit him so hard this time. He got Zofran and Visteril and he started to feel better that evening after we got home. When we left the clinic at 5, he looked like he'd been up for 48 hours straight - dark circles under his eyes, wobbly on his legs, incredibly tired, and of course very, very whiny. I'm not complaining, I'm really not, but at 54 pounds, 4 ft - 1 inch tall... It makes me nostalgic for that 8 lb., 19 1/2 inch baby I brought into this world. So as a compromise and to try to not throw my back out, I "helped" him out to the car. He was not a happy camper. Cried and cried, saying he was so tired, and why, oh why, couldn't I just pick him up?

But today he is back to being his happy go lucky self. Actually, he bounced back last night, enough to eat two platefuls of plain spaghetti noodles with parmesan. No sauce. At that point, I was not up to arguing the merits of sauce.

Saturday night, we got into a fender bender. Troy and I were driving into Dallas to pick up Jeffrey (his father came into town and wanted to see him for the day). It was raining and dark. We pulled behind a guy in a van at a light. The guy's back up lights come on and then BAM! He backed up right into us. He was an elderly guy (late 60's) and he claimed he did not see us (which he probably didn't). He was in a van, we were in a small black, Honda Civic. So, my car needs a new bumper, new headlight, new grill, new hood latch, and last but definitely not least, a new Honda Symbol. I had no idea you had to buy those separate. He wants to pay it out of pocket and not claim it on his insurance. We'll see. I don't think he liked the estimate the Collision Center gave him.

Troy is out of town this week. He left Sunday night and will be back Wednesday. He is in San Antonio for work.

Next week we go back for another spinal tap. Pray for clear fluid!!!!

Take Care & God Bless,
Chuson

Thursday, March 11, 2004 11:26 AM CST

Hi There!

Well, we were admitted Monday for the IV Methotrexate infusion. The treatment went pretty well, all things considering, and we got to leave the hospital on Wednesday.

We go back again on Monday, the 15th, for the VP-16 and Cytoxan.

Jeffrey's spinal headache went away just in time for Sunday (Troy's birthday) and his treatment on Monday. They are planning on having him lay flat for longer next spinal tap and hope that prevents it from happening again.

We had a cookout for Troy's birthday and had some friends over. It was fun and I think Troy enjoyed it. I know Jeffrey did. There were several kids there and he had a great time playing with them.

I hope you are all having a blessed week. Things are well here and we are just ready for the weekend.

Take Care & God Bless,
Chuson

Sunday, March 7, 2004 7:52 PM CST

Happy Birthday Troy!!!!!

Hope it is a good one.

Love you,

Chuson & Jeffrey

Thursday, March 4, 2004 10:00 PM CST

Today is the 2 year anniversary of Jeffrey's first diagnosis. I can't believe 2 years have gone by. It seems longer sometimes. I cannot really remember what life was like before cancer...

Anyways, Jeffrey is still under the weather. He is suffering from a spinal headache and vomiting. The doctor says the headache could last up to a week... GREAT. So please pray that it goes away sooner.

The good thing is the spinal fluid is still clear. Yay.

Well, I am off to bed.

Take Care and God Bless,
Chuson

Wednesday, March 3, 2004 9:57 AM CST

Just a quick update to let you know how we are doing. Jeffrey had his spinal on Monday. The procedure went really well, but he is having a lot of side effects this time around. He had a lot of back pain yesterday, but seemed okay otherwise, it was nothing that tylenol could not handle. Today is worse, he is vomiting and also still has the intense back pain. Troy is staying with him this morning and I am working, and this afternoon, I will go home and he will go back to work. We have given him Tylenol with Codeine now and hopefully that will help. Poor baby is crying and in quite a bit of pain. I called the clinic and they said to just monitor him and try to ease his symptoms. I am concerned because normally he does not react this way to spinal taps. *sigh* What a roller coaster ride this can be. Up one day and down the next. Please say an extra prayer that Jeffrey feels better very soon.

On a side note, we went and saw The Passion of the Christ this past Sunday. What an awesome, inspiring, powerful movie. I will update more on this later.

Take Care & God Bless to you all.

Chuson

Wednesday, February 25, 2004 2:28 PM CST

Well, we got to leave the hospital late Wednesday. Sorry for the long delay in updating, but things are crazy around here. We moved this past weekend to another townhome. This one is bigger and in a better neighborhood. We are living out of boxes right now and just trying to get settled in. Thanks to all the people who helped me move this past weekend (Troy, Scott, Jonathon, Bob, Ed, and Rachel).

Jeffrey went to clinic this past Monday and his counts were pretty good, so they went ahead and gave him the VP-16 and the cytoxan. We were there all day. I was so tired by the time we got to go home. Dr. Griffin put Jeffrey on some Augmentin, because there is some fluid in his ear that Dr. Griffin thinks will develop into an ear infection. He has been really congested the past 2 weeks so he is also on Zyrtec and Flonase (which he absolutely cannot stand – it is a nose spray). But even though he does not like it, it is definitely helping. I have noticed a huge improvement since he started taking it.

Jeffrey’s school play was adorable. He said his line perfectly. Look out Hollywood!

We go back to clinic this coming Monday for another spinal tap. Pray for clear results. The procedure is much easier to take (for both of us) now that he is being sedated.

A big thank you to Vicki, Robin, and Gloria who are all helping me with Jeffrey this week. These are some wonderful ladies from my church who care for Jeffrey so that I can come to work. I am so grateful for my church and the community groups. They really come through when you need help.

And YES, we are thoroughly disappointed that A-Rod has been traded. What the heck were they thinking?

Well, this update is going to be short (sorry). I will try to update a little more later.

Take Care & God Bless,
Chuson

Tuesday, February 17, 2004 4:49 PM CST

Hello everyone and thanks for checking in. I hope that everyone is doing well. I think of those who walk our road often.

Jeffrey’s counts rebounded. His ANC is about 3000. Go figure. So we were admitted and his ph level was not good enough. He said, “Man, I drank all that juice for NOTHING!” It was funny. They did not start his chemo until 5 pm. He is doing really well today. The chemo has not wiped him out like it did last time. He is up and laughing and playing in the playroom. Vicki is with him today while I am at work and she says he is doing great. She did call me to inform me that he has requested a ham sandwich from HOME, because he only likes the food from home. (That is what he told Miss Vicki).

Troy met a man last night in the hospital whose son was just diagnosed last month with, I think, neuroblastoma. I guess he was very broken up about it. I think it did him good to talk to someone about it. It made me think of us almost 2 years ago when this whole thing started. I remember someone saying, it will get easier. I didn’t know what to think of that then, and to be honest, I still really don’t. I’m not sure if it gets easier, or if you just start to get numb after awhile.

The second grade is doing their school play this Thursday night. Jeffrey plays a Bear and he has a line in the play. He is very excited. At first, when he went back to school last week he was a little sad because he did not have a line because they did not think he was going to be there. But they did some switching around and now he has a little part. Thank you 2nd grade teachers and drama teacher!!
The sweetest thing to me is the line he has. It is:

“The generosity you give to others will come back to you.”

Words to live by, don’t you think?

Oh, I almost forgot! It SNOWED here on Saturday (Valentine’s Day). It was so neat! Jeffrey was soooo excited. Every time it got a little cold he would ask me if it was going to snow and I kept having to tell him no. It does not snow that much down here. Well Saturday, we got the great kind of snow. The kind that is so fluffy and sticks (great for snowballs and snowmen!). He was beating on the bedroom door telling me it was snowing really early in the morning. By 10 he was outside playing. We built a little snowman and had a snowball fight. He just laughed and laughed every time he hit me with a snowball. The snow was melted by the next day. That’s Texas for ya! I am so glad it snowed. Jeffrey loves the snow, and I feel it was a blessing for it to happen on a weekend where we could enjoy it together. Thank you Lord.

All in all, we are doing pretty good this week.
Have a wonderful and blessed week.

I will try to update more later. Send some prayers our way so we can leave the hospital on Wednesday!

Take Care,
Chuson

Monday, February 9, 2004 3:03 PM CST

Hi There!

So we packed our suitcase, loaded up the car, and headed to the hospital for our 3 days of Methotrexate... only to find out that Jeffrey's ANC is at 150. Which of course many of you know means NO CHEMO.

We are off all meds for this week, and we go back next Monday to try again. Dr. Griffin says this is typical. It makes me nervous to have him off meds. I know, I know... I just can't be happy. I worry when he is getting it, because I can't stop thinking about all that stuff running through his body hoping it takes out the cancer and leaves enough of the good stuff... And I worry when he doesn't... *sigh* Go figure.

So we are on germ patrol this week.

Not much else going on here other than that. Several ladies from my church are falling in love with Jeffrey. They have been taking turns keeping Jeffrey for me while I go to work and they can't stop talking about what a good kid he is. HA!! Just kidding, he is a good kid, but he is definitely on the spoiled side. :o) Which I'm SURE (sarcasm) that I'm the only mom of a cancer kid that is like that. Anyways, we tried trimming his hair last night, it is thinning out, but what he does have is kind of hanging off his ears and getting long around his neck and he positively insists that if we trim it, it will make the rest of it fall out??? So we got to cut a tiny bit off, but it's a little lopsided because he wouldn't hold still. So if you see him and you wonder what happened...

Well, I will update again next week.

Take Care & God Bless,
Chuson

Wednesday, February 4, 2004 1:00 PM CST

Update Thursday Feb. 5, 2004 - 9:22 am

Conor has earned his Angel Wings. Say a prayer for his family who must be grieving so. Conor is free of cancer and will no longer be in any pain, but how sorrowful for his family left behind.

Life just doesn't seem fair sometimes. I found this poem and it really pierced my heart.

God saw you getting tired
when a cure was not to be
So He put his arms around you
and whispered, "Come to me."
You didn't deserve what you went
through and so he gave you rest
God's garden must be beautiful
He only takes the best
And when he saw you sleeping
so peaceful, free from pain
We could not wish you back
to suffer that again
It broke our hearts to lose you
but you did not go alone
for part of us went with you
The day God took you home.

I did not know this child. Yet as a mother, I know how heartbroken this family must be.

________________________________________

Hello everyone. Thanks for checking in.

Jeffrey had his spinal tap on Monday. We got to clinic at 7:45 am (that is really early for me) and his counts came back okay, not great, but okay enough to proceed with chemo. His ANC was » 500. His platelets were down to 89,000 and his hemoglobin is at 8.9. White count at 800. So… I am keeping an eye on him this week for fevers, etc. Hopefully his counts will come back up by Monday. The docs seem to think he is doing okay, so… He gets to go to school this week!!! He was really excited to be able to go. He has not been in a really long time. Next week he won’t be able to so I really debated about it because I really don’t want him to catch anything, but then decided to let him go. I can’t keep him in a bubble and I am trying really hard to not let the cancer control our lives. I think he was getting kind of down about being home all the time and he really misses school and all of his friends. I talked to him right after school on Tuesday and he was so excited and happy. His classmates all wrote him letters while he was gone. We are having a good week this week.

We go back to clinic on Monday. We are supposed to be admitted for 2-3 days for the IV Methotrexate.

Please go by this site and drop an encouraging note to Conor and his family. They are going through a very, very difficult time right now. I pray I never walk their path. God grants miracles, I believe in miracles. Pray, pray, pray for this family that theirs comes in the form they are wanting.

http://caringbridge.org/canada/conorford/index.htm

I hope that all of you up North are braving the cold weather. I hope it gets warmer for you up there.

To God Be The Glory.
Chuson

Tuesday, January 27, 2004 3:35 PM CST

Hello everyone. Thanks for checking in. Well, we got to clinic first thing on Monday morning for chemo. Jeffrey’s stomach was upset so they had him lay down for a little while. His counts came back okay though and so they decided to go ahead with the chemo.

We were there all day long. It was a long day. They ran the VP-16 first. Then gave him messna to help his liver. And then they gave him the cytoxan. It makes me nervous to see how his complexion changes when they give him certain types of chemotherapy. When he gets the Ara-C he gets these really dark circles under his eyes while the chemo is going in. It kind of scares me. The VP-16 did the same, although not as badly. They gave him zofran and visteril before the chemo to control the nausea. When we finally got to go home they said to give him the nausea meds before he showed signs of nausea and to make sure he drank lots of water. They said the chemo can damage his kidneys and he needed to try and flush them out as much as possible. The nice thing is we got to stay in a little room by ourselves that had a television and video game console. We watched Shrek, Toy Story, and played some games. He ate a little bit of spaghetti while we were there and also took 2 naps. He is doing well today. He was exhausted today and did not get to do his home schooling. Ms. Stoessel said she would come back tomorrow to try again. She is so sweet and tries very hard to work around how Jeffrey is feeling.

We go back next Monday, the 2nd, for a spinal tap with chemo. We have to be there at 7:45 am. The spinal is set for 10 am. We will go over to the main hospital for anesthesia (yay). These go so much easier for him than they used to now that he is getting the propofol.

Oh, Jeffrey did get to go to the Pine Wood Derby. So I am glad Troy finished the car. We did not win a trophy, but at least he did get to participate! :o) He was very excited about that, but disappointed that he did not win anything. Ah well, there is always next year! :o) Sunday, he felt good enough to go outside for a little while. It was nice and sunny here, and so we went outside and played some basketball. He then took a break and then went out again a little while later. Him and Troy practiced lay ups and then the 2nd time we went out, we all played a game of Horse. It was starting to get dark, so they called it a tie game (I lost).

That is about it for now. I will update after the LP on Monday. Pray that things go smoothly for us. Jeffrey is experiencing some discomfort when he has his port accessed now. They said it might be extremely sensitive due to it being accessed so much lately. So now his anxiety about having it done is up.

I hope you are all doing well. Have a blessed week.

Take Care & God Bless,
Chuson

Thursday, January 22, 2004 1:20 PM CST

Hello everyone! We got to come home yesterday late afternoon. Jeffrey was glad to go home, but he was “pooped” as he put it, and quickly fell asleep after we walked through the door. The chemo really wiped him out this time, he slept for a majority of the time we were inpatient.

I picked up his prescriptions from a drive thru pharmacy (that is a wonderful invention by the way). So I did not have to drag him out of the car to go get it. He took his leucovorin rescue med twice yesterday. And hopefully, he will be feeling better soon.

Today, I am fortunate enough to be at work! :o) This is just an example of how blessed we are. Jeffrey is at home and there with him is his first grade teacher. Yes, that’s right. His teacher from last year volunteered to keep him for me for today and tomorrow. She had some days off that she had to “use or lose” and she is using them to help us out. Even though we have seen how wonderful people can be, I still get surprised sometimes. A big thank you to Ms. Judy Alford, Jeffrey’s first grade teacher. He absolutely adores her (as he does his Kindergarten and 2nd Grade Teacher) and I know he is having a great time with her.

It actually feels good to be back at the office. Being at the hospital all the time can really drag you down.

We go back on Monday for the VP-16. It will be the first time he has gotten that type of chemo so I am not quite sure what to expect… (any advice would be appreciated).

Tomorrow Scouts are supposed to be doing the Pine Derby race. Jeffrey has been feeling so rotten that we did not think he would want to do it, but then he decided 2 days ago that he wanted to make the car. Poor Troy (you gotta feel for him) has been scrambling to get it done. We missed the workshop (where they provide all the tools for it) because Jeffrey was in the hospital. And so Troy is having to improvise. He ran to Home Depot to get some tools Tuesday night while we were at the hospital so that he could get it started. Jeffrey feels so puny that he actually just kind of sits there while Troy does the work. *sigh* I told Troy to forget it – that Jeffrey will probably not feel well enough to go there anyways, but Troy says he thinks they should finish the car, just in case. He said, “Well what if he does feel good enough and then doesn’t have a car?” So, he was up until almost 11 last night working on it and it still is not done. After working long hours during the day, then spending the night at the hospital, and then running around getting all the stuff together to work on the car all last evening, I know Troy is exhausted. He does a lot for us (and I do mean a lot) and I really don't know what we would do without him. I’m beginning to wonder how I ever got anything done before he came around…

Well, I will update again after Jeffrey’s clinic appointment on Monday. I hope you are all having a good week.

Take Care & God Bless,
Chuson

Monday, January 19, 2004 5:22 PM CST

Hi everyone. We are inpatient today for his methotrexate. It is a 24 hour infusion, we will be here until sometime Wednesday. Hopefully his levels will come back below what it needs to be and we will get to go home.

Jeffrey is sleeping right now. He was doing well and then they gave him the zofran and started his chemo and 30 minutes ago and now he is wiped out.

I am tired as well. Mrs. Oakley (Jeffrey's teacher) came by and spent some time with him. She visited and then went over some schoolwork with him. She is wonderful and Jeffrey really enjoyed the visit.

Not much else going on here to report. His spinal fluid came back clear (yay).

Well, I am going to try and take a nap while he does.

Take Care & God Bless,
Chuson

Wednesday, January 14, 2004 10:22 PM CST

Hello everyone. Thanks for checking in. We are home. They let us come home Sunday evening. Then we were back in Clinic on Monday to determine whether or not he could get his spinal tap done that day. He had yucky cough and sniffly nose. I told the anesthesiologist that Dr. Griffin said the procedure could be put off for a few days. The anesthesiologist said it would be best to wait a week. A couple of days would not make a difference in his favor. So after consulting with Dr. Griffin, who said that we could not wait a week to do it since Jeffrey has already been delayed once to the allergic reaction he had to the L-Asp they decided to go ahead with the procedure. With the understanding that Jeffrey may have to be admitted if he had trouble breathing. They gave him a breathing treatment before and one right after, and he did fine. Tuesday, we ended up in the ER all day. Jeffrey tested positive for the flu. Which we now both have. 2004 is not off to a good start at all. They do not know yet if he will be well enough to get chemo on Monday. I do know that we spent all last night in the bathroom while Jeffrey threw up. I feel so sorry for him. He just feels really crummy and to be honest so do I.

But none of that compares to what happened today. Today, my son asked me a very hard question. Out of the blue, he looked at me and said, “Mommy, is God even trying to make me better?” The first thing that popped into my head was, that’s a damn good question. Forgive me, but yes it was. I just hugged him and said, “I think he is, Jeffrey, but sometimes God doesn’t do things as fast as we would like him to.” My sweet baby was satisfied with that answer and went back to watching the Stitch movie. In all honesty, he was more satisfied with that answer than I am. Even now, that question is forgotten by him, but I sit here and wonder about it. All last night as I was holding him up while he vomited, I couldn’t help but think why is this happening? This just isn’t right. People say, he will become a stronger person for it. Couldn’t he have learned to be strong in another way? I think so. People say, this will be his testament it will strengthen his relationship with God. Couldn’t he have grown into a God fearing man and walked in the footsteps of Jesus without all of this? People say, his situation gives others inspiration, it makes them more grateful for what they have. Well forgive me my selfishness, but why teach them this lesson at my son’s expense? Maybe this showed me how much I really had in my life? Well, I’m pretty sure I learned that during the first diagnosis. So why the relapse? WHY WHY WHY. I do not know what God’s will is, but I need to have faith. Sometimes things just get so hard.

I am so tired. I lysoled the entire house today. I have not been to work since last Wednesday. I have been praying for a way to stay home with Jeffrey during the day and still be able to pay the bills. The answer has not come yet, but I will continue to pray on it. Please pray that Jeffrey gets over the flu quickly. Please pray I get better soon as well. And well pray for a cure and for all these children who fight this fight. Children should be playing, not fighting cancer. It just is not fair.

Take Care & God Bless,
Chuson

Saturday, January 10, 2004 10:41 PM CST

Hello everyone.

Just a quick update to let you all know that Jeffrey was admitted into the hospital yesterday. They have determined he has a stomach virus. Thank goodness it is nothing more serious. They did a sonogram on his stomach to make sure nothing was inflamed - they were worried about appendicitis or pancreatitis (spelling?) And then of course bacterial infections had to be ruled out. Looks like we are in for just a regular virus - whoo what a relief! LOL Anyways, he got red blood cells today and he has not been running a high fever for the last couple of hours. Last night it got up to 104 and they actually gave him a dose of motrin because the tylenol could not break it. He is feeling a lot better today though and actually kept some food down today. We are hoping to go home sometime tomorrow. Jeffrey is supposed to get a spinal tap on Monday, but we'll have to see how he is recovering from this bug. Anyways, just wanted to update and let everyone know what was going on. Jeffrey is not happy guy at this point. I think he is sick of this place, but hey, I can't blame him, to be honest, so am I, and at least I can leave for a little bit here and there.

Anyways, I will update more later. Take care and God Bless,

Chuson

Saturday, January 3, 2004 11:31 AM CST

HAPPY NEW YEAR!!! May 2004 be a healthy, happy, and safe year for all of you. We did not do anything to exciting this New Year’s Eve. But it was still nice. We were together at home and we watched movies and played games together. Jeffrey made it until midnight. (He actually took a short nap before that, but woke up in time.) The next day was spent the same way, watching movies and just hanging out. It was nice to not have to rush around doing stuff.

Jeffrey is doing well. his counts are a little low, but not low enough for transfusion. We go back on Friday to make sure he does not need one before his scheduled Spinal Tap (ugh) on the following Monday.

The coming of the new year has made me reflect on many things. This past year has been terribly difficult for us. Yet many good things happened as well.

I just wanted to take a moment and thank everyone for everything that has been done for Jeffrey and I. I truly was able to see the works of God this holiday season. I was concerned about how we would be able to do Christmas due to my finances at this time, and it turns out I had absolutely nothing to worry about. We were truly blessed this Christmas. Jeffrey and I were overwhelmed to say the least. I have never felt so “rich”. Thank you all from around the world who have sent their prayers and well wishes for health and cure.

I was also praying that we would not have to spend Christmas in the hospital and once again our prayers were answered. We did not get admitted until December 26. God is so good. We were able to spend Christmas Eve and Christmas Day with loved ones and each other. In my heart I feel that no matter what happens this is the Christmas I will remember the most. This time of year is usually mine and Jeffrey's favorite time of year. Yet at the end of October, when we were hit with the news of Jeffrey's relapse and told the cancer had spread to his brain and spinal column (CNS relapse), I remember thinking at that time that I did not know how to go on. I remember thinking that the holidays would never be the same. And I was right, but not in the way I initially thought. For even though this time of year will always remind me of the painful events of the past few months, it will also remind me of the generosity and the kindness of so many people we barely knew. And that kind of caring, the huge exhibit of selflessness, the giving without asking for anything in return, and the love given to us unconditionally shows me that the true meaning of Christmas is still alive. And that, gives me great hope and faith.

So I guess the best gifts I received this past year were faith, hope, and love. And as we all know and I often say, without those three things, what do we have?

I do not know what the future holds and I do not know what God's will is. But I do know that my soul, which felt extremely conflicted after fighting this disease for almost 2 years, has been somewhat restored and absolutely uplifted by the outpouring of care and concern we have received.

As the new year is born, I cannot help but think of the families who go on minus one. How do you account for that empty space at the dinner table? That void in your heart? The emptiness of your arms? With God’s grace and mercy I will never ever have to find out. But today, I say an extra prayer for those families… Heaven had many new additions this year… Davin, Jalen, Colby, Robert, Noah, Taylor…. sadly the list goes on and on…. Gone, but never forgotten. And what can we do to honor those that have gone on? Continue to fight. Continue to give. Donate blood and platelets if you can. Sign up for the bone marrow registry. Support research for a cure. Never give up. NEVER GIVE UP. Whatever your fight, whatever your challenge, NEVER GIVE UP.

For 2004:
I pray for a cure.
I pray for healing.
I pray for peace in the world and safety for our troops.
I pray for contentment and happiness.
Appreciate all that you have. Never take a moment for granted. Do not put the really important things off until tomorrow, because tomorrow may never come. Hug your children and loved ones close.


Thank you all for caring.

God Bless You All in the new Year,
Chuson & Jeffrey

P.S. Karen you are a doll. You have no idea how disappointed he was when that dang duck wouldn’t quack!!!!! LOL

Tuesday, December 30, 2003 2:59 PM CST

First of all, Merry Christmas to you all! (A little late, I know)…
Thanks for checking in on us. We were at home on Christmas Day!!! Yay! :o) We went to clinic on the 22nd and were told that Jeffrey’s counts were good enough, but there were no rooms on the 3rd floor. Once again, rather sad to think of so many children there, but that meant we could push his chemo off until after Christmas. We had a wonderful holiday.

Christmas Eve we went over to my Aunt’s house, then later on that evening, my mom and brother and his girlfriend all came over. Christmas morning was spent at home and we opened gifts and just spent the morning together. I got a digital camera!!! Woohoo! I love it. It was from Troy. He said he had been planning it since last year when I was bemoaning the fact that we did not have one. I have wanted one for a very long time and I have been taking lots of pictures with it already!! So now I have no excuse not to update the pictures on this site regularly. Jeffrey got everything on his wish list (thanks to Secret Santas, etc.) and we truly had a blessed day. Later that morning we went over to my brother’s for a little while and then we went off to Troy’s Aunt’s house to visit with his family. Troy’s cousins were there with their kids and so were his brothers and parents. It was really nice and Jeffrey loves to play with all the boys in the family. I have to admit, I was thoroughly exhausted by the time it was all over!

Let’s see…. Jeffrey big gift was a basketball hoop. He is excited about getting it all put together. He had also asked for a rubber duck (don’t know why), but was disappointed because the one he got does not quack when you squeeze it. I have no idea where to get one that quacks and that can get wet.

Friday, we went inpatient for the Ara-C. It went okay. I think all the chemo is wearing him down. The Ara-C makes him get great big dark circles under his eyes, and the nausea and vomiting were both pretty bad this time. He ran a fever with it (it got up to 103) and he still has a low grade temp today (about 100). Sunday, he got the PEG aspariginase in both legs. They split the dosage into 2 syringes and gave both at the same time. His left leg was sorer than his right. But both were really bothering him on Monday. He had a very difficult time walking around. He also was vomiting and nauseous most of yesterday. He started to feel better towards the evening. Yesterday was also day 1 of the GCSF. He cried and insisted it should be day 3 since he had gotten 2 shots the day earlier. My poor baby. His hair is steadily falling out and he is starting to get bald spots on his head. He takes his hat everywhere now.

But, all things considering, we are doing okay. We had a really nice holiday, and we were blessed enough to be able to spend it together and at HOME.

Jeffrey’s next clinic appointment is Friday (the 2nd). I will let you know how everything goes.

Happy New Year to you all!
Take Care & God Bless,

Chuson

Monday, December 22, 2003 3:14 PM CST

Hello everyone, thanks for checking in.

So, let’s see… where to start?
First, Jeffrey is doing well. His hair started falling out last Thursday and he is rather upset about that. It did not fall out at all during the first diagnosis, but although it is “doing its best to hang in there” (as Jeffrey puts it), it is steadily falling out. I have been vacuuming hair all week. His counts are good and his leg is healing very well. It still bothers him a little, but he is able to run now. We were supposed to be admitted today for Ara-C, but the 3rd floor is full. So they sent us home to wait for a room to open up. They do not think it will happen today, but we are to be available if it does. However, if one opens up tomorrow, we will undoubtedly be in the hospital on Christmas Day. I want to avoid this if at all possible. There is no guarantee a room will open by tomorrow either. SOOOO….. (I’m wondering if it is possible to have a normal life while under treatment???) Dr. Griffin said, we might just hold off on chemo until Friday. That way his leg will have extra time to heal, etc. etc. He will now be getting the PEG Aspariginase instead of the L-Aspariginase. This will be given once during the cycle instead of 3 times, so I guess that is better. *sigh*

Now for the update some of you have been waiting for. Just as a review, Jeffrey’s father did not give him his chemo during the summer. He does not believe in conventional chemo and thinks it is too toxic and feels like Jeffrey can be healed using all natural remedies. He denied everything and even went so far to say that it was my fault Jeffrey did not get his medicines, because I failed to pack them (not true). Then he said that he was healing Jeffrey and that he “bet his life on it” that Jeffrey would not relapse. And then, Jeffrey relapsed in October. So, we actually had a court date on November 19, but he filed for a continuance. A restraining order was in affect during the past 2 months. So our 2nd court appearance was this past Friday. The last 2 months have not been pretty between us to say the least. Here is the outcome of Friday.

He is no longer allowed to have any say in Jeffrey’s medical treatment. He is no longer allowed to bombard the doctor or myself with alternative treatment suggestions. He is not allowed to take Jeffrey out of the state of Texas during his entire treatment. Which means he has to come down here whenever he wants to see Jeffrey. He is under a court order to give Jeffrey his medication when he does get to see him and if he doesn’t, he will be prosecuted for medical endangerment of a child. She was very stern, and I had heard she was no nonsense, and I heard right.
I am pretty satisfied with what happened. I was going for no over night visitation, but the judge would not grant that. She said that Jeffrey is very sick and he needs both parents right now. I can understand that. My concern / fear is he will not give him the medication anyways. This will just make him more sneaky. The judge told him, “I hope you love your son as much as she does.” It made me very sad to say the least. I hope he has learned his lesson and will not do anything like that if ever given the opportunity.

Regarding the child support, he is supposed to come up with a good faith lump sum. The judge said she would put him in jail for the 10 days (stipulated by Texas State Law) if I wanted to. But, I just couldn’t do it. Some of you may not understand that, especially after everything he has put us through, but the bottom line is, he is still Jeffrey’s father, and I just didn’t see how that would help anyone. I feel like I would only have been trying to get back at him and I just couldn’t do it.
He was very upset about the outcome (Jeffrey’s father), but has been extremely cordial since then. He knows I could have sent him to jail, and knows that I can still do so if I were to change my mind. He did mention that he was not made of money and could not come up with it all, but in all honesty I have no pity for him in that area. He stopped paying child support about 2 months after Jeffrey was first diagnosed. And after struggling the way we have in the last year and a half without any help from him, I have a hard time feeling sorry for him.

I prayed for a long time for strength, justice, and protection for Jeffrey. Thank God for answering my prayers.

Merry Christmas to you all. God Bless you and your families. Remember the reason for the season.

Take a moment and count all of your blessings. Things may seem hard now, but look at what you have, not what you are lacking. So many children have passed recently, say an extra prayer for them this year. How hard it must be to be in the season of joy and giving, and mourning such a loss at the same time.

The night before the court date, I came upon this scripture.

Psalm 94:19

Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer.

Hold on to your faith and your hope. For without these things and love, we have nothing.

Take Care & God Bless,
Chuson

Tuesday, December 16, 2003 12:07 AM CST

Hi there! Just a quick update to let you all know that we got to come home yesterday afternoon. Yay! We go back in Friday morning for a CBC check to make sure his counts have not gone back down by then, but for now, we are doing a lot better. He is limping a little bit, but for the most part the pain is gone! :o) Jeffrey is back to being his happy self again. I am so glad.

His best friend Eliandro and another friend Jacob (with their brothers Tony and Eric) came to visit him at the hospital on Sunday. It was great. He was so excited to see them. Thanks Liz for bringing them by, it really lifted his spirits.

I have done absolutely NO Christmas shopping. And am not ready for Christmas at all!!! We go back for admittance on the 22nd for the ARA-C. *sigh* I think by the time this month is over, we will have been in the hospital this month as much as we were out! I guess that is how it goes sometimes.

Well say some extra prayers for us this week, we need them!!! I will update more later.

Take Care & God Bless,

Chuson

Thursday, December 11, 2003 11:22 AM CST

Mini Update: Dec. 12, 4:41 pm

Just a quick update for all of you. Jeffrey is still running a fever. It goes up and down, it is now about 103. His leg is still giving him lots of pain. But we won't complain too much right now.

It is with a broken heart that I report the passing of Davin Rucker. He was a strong little boy, who put up a great fight like all these children do. Please go by his webpage and offer his family a word of sympathy and encouragement. Heaven has another beautiful child.

www.caringbridge.org/tx/davinrucker

What a world we live in to lose so many children to this awful disease.
________________________________________

Mini Update: 2:27 pm
Jeffrey's hemoglobin was down to 7 so they are giving him blood right now. And his WBC is at .3. But the good news is his fever is down to 100.3, which is the lowest it's been. :o)
________________________________________

Hi everyone. I just wanted to update really quickly and let everyone know what was going on. Jeffrey had an allergic reaction to the L-Aspariginase shot he got on Monday. By Wednesday morning he could not even walk he was in so much pain. It was awful. I took him to the hospital and they ran some tests. He started running a fever which got up to 104. They ran a cbc and found out his ANC is 43. So we have been admitted. Platelets were down to 19,000, so he got those last night. They are saying we will be there for about a week. His fever has still not broken completely so they ran a blood culture to see if they can find anything else going on. Right now they are running two different types of antibiotics just in case.

We missed the H/O Christmas party which was a disappointment, and Jeffrey is rather depressed. He is also getting extremely agitated. It makes me so sad to see him that way especially since he is usually so laid back and easy going. He is normally cheerful, but he just feels so rotten. He had been through so much that by the time they came in to give him his GCSF shot, he had had it. He fought it and they had to hold him down. It was awful, one of the nurses was crying it made her feel so bad.

The saddest thing to me is that we had to stay in a room on the 4th floor because the Hematology/Oncology floor is FULL. There are no rooms available, and all I can think is what is going on? So many children so sick. So many babies fighting this disease. They say that childhood cancer is so rare, but not from where I am standing. When a room opens up we will move downstairs. H/O nurses get special training to administer chemotherapy so Jeffrey will be transferred asap.

This is normally my favorite time of year, and this year I just can’t seem to get anything done for the holidays. I hope and pray we will be home for Christmas Day.

Thank you for all the messages left for Jeffrey, he loves to read them.

Take Care & God Bless,
Chuson

Friday, December 5, 2003 12:37 AM CST

So today I got to become Nurse Mommy and stick my son in the leg with a needle which he swears looked like a sword. I felt like I was going to puke the entire time the home health care nurse was going over everything with me. Of course Jeffrey panicked at the last minute, and I ended up having to sit on his legs and the nurse had to hold his arms down while I jabbed him. What a wonderful way to start out the day. And the best news is, we get to do it all over again tomorrow.

I think I did really well. I didn’t burst into tears until I jabbed the needle in, and then while I was crying, I injected the medication. The nurse who was very sweet and tried to be consoling said, “Don’t worry, Mom, you will both get used to it and it will be easier.” Get used to it? How does that sound even remotely okay? How unfair is it that we should have to “get used to this” CRAP?! Afterwards, as Jeffrey is handing me Kleenex and patting ME on the back and saying it’s okay – all the while he is hiccupping from trying to stop crying himself. We had a long talk. About how all I want for him is to get better. He wanted to know why I was crying (I mean sheesh, it’s not like I got stuck or anything like that), and I told him that it hurts me to have to do this. I wish more than anything that I could trade places with him and take his medicine for him. I told him that we are trying to help him to get better and that he has to take all his medications to do that. I also told him that I love him more than anything and that all I want in this world is for him to get better. He said he understood and that he would try really hard to hold still next time. I feel so sorry for him. I hate this. I HATE IT. I HATE IT.

Cancer SUCKS.

I can’t even remember what it was like to be normal. What does that mean normal? I will never again complain about a regular cold, although now, I have to wonder is it really just a cold? Is it really just a virus? I don’t think I will ever relax and let go of this fear that hangs over my head on a daily basis. Remission. What exactly does that mean? It doesn’t mean CURED. It doesn’t mean gone and never coming back. It just means, the medicine is working / has worked FOR NOW. Depressing right? For those who are living this nightmare, you completely understand where I’m coming from. And yet, yet, I am so grateful. For what you say? Because it can always be worse. Sometimes, I think man, this sucks. This is so terrible, and how unfair and how hard everything is. And then I see someone who has lost a child or someone who has been told there is no hope, and then I think, “Maybe this isn’t so bad after all.” Because I’d much rather be HERE, than THERE. The most terrifying thing to me is that little voice in my head that sometimes fights its way through – the one that whispers to me “Someday, you might be THERE.” So what do you do? The most common thing I hear from people is “I don’t know how you do it. You are so strong. I could not handle what you are going through.” And I always say, yes you could. You don’t know what you are capable of doing until you have to do it. You could do it, you just don’t want to. Because, in the end, what choice do we have? It’s not like I could curl up in the fetal position and hide (although sometimes I really, really want to do that). Courage is not the absence of fear, it is just the ability to move forward in spite of it. The cancer is here with or without me. And my son needs me, he cannot fight this battle alone. It’s like belonging to a club that you never wanted to join, the dues are extremely high, and club activities take up so much of your time, but the funny thing is you hope you are a member for a very long time, because there is only one way to leave the club. And given the choice??? Hand me my renewal form, please!! I know I am just rambling, but I just can’t seem to shake the blues lately.

And so we go on. And tomorrow, I will get up and give Jeffrey his shot again. And I still have hope, and I still have faith, and really without those 2 things, what do we have?

Remember all of your blessings this holiday season. If all of this has taught me anything, it is that you should never take a single moment for granted.

Until next time,
Take Care & God Bless,

Chuson

Wednesday, December 3, 2003 10:02 AM CST

Mini Update: Thursday 1:43 pm
Well we left the hospital today. I am exhausted. They gave Jeff his GCSF shot before we left. He fought it and cried. I don't know how I am going to give it to him myself... Although, the surprise box idea in the guestbook was a good one. I will try it. Any other suggestions? I took Jeffrey to Troy's Mom, she is keeping him for me and I am at work trying to get a few hours in. At least we got to go home today! I just wanted to let you all know we are home. And also, the steroids are also wearing off. His appetite has gone down to barely eating anything. *sigh* It's either one extreme or another I guess.

God Bless,
Chuson
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Mini Update: 1:40 pm
Well, I guess I spoke too soon. Jeffrey started having an accelerated heartbeat and heart pain. Then his nose got stuffy and he is now running a fever. I have not heard the "official" word, but I do not think we are going home today. :o(
----------------------------------------

Hi everyone! Thanks for checking in. I hope you all had a wonderful Thanksgiving weekend. Ours was pretty nice. We ate entirely too much though! We relaxed quite a bit. Oh for those of you who asked, Troy started feeling better on Thanksgiving Day. He is fully recovered now from whatever bug he had. Thanks for all the get well wishes!! Saturday we took Jeffrey to see Looney Tunes Back In Action. It was funny and Jeffrey enjoyed seeing it. Troy went and picked up his mom on Sunday and we all had dinner at Bennigan’s that night. Troy’s mom, Geraldine, came to help out with Jeffrey for a couple of weeks. She is going to stay with him while I go to work. I am so grateful for her help.

Monday we came to clinic to get counts to make sure he could get admitted for chemo. He was supposed to get blood drawn from his arm, but he was afraid to and Miss Cindy (his nurse) felt bad for him because she knew he had to come to the hospital to stay so she gave him the option of getting 2-3 finger pokes instead. And YEP that is what Jeffrey opted for. Two finger pokes later she got enough blood for all the tests they were running. Guess who was at clinic? Two of the Dallas Cowboys – Mario Edwards and Matt Lehr. I don’t know either one of them, but Troy did! They gave Jeffrey an autographed picture and sock. Also, a Cowboys book, pencil, and stuffed bear. OH and don’t let me forget a picture of the Dallas Cheerleaders. Woohoo! We finally got admitted around 12:30ish. They started the Ara-C around 3. All in all, it has not gone that badly (knock on wood, we are not quite done yet). He has had some nausea and upset stomach, but they gave him zantac and visteril and it has taken care of it. We were up every hour on the hour last night because the fluids make him constantly need to urinate, but I am not complaining (too much - *yawn*) because that means his kidneys are working GREAT!

Well now it is Wednesday morning. Jeffrey had his last dose of Ara-C at 3 am this morning. Than at 9 they gave him his shot of L-Aspariginase. THAT was a little bit of an ordeal, but we made it through it. I am hoping we will get to leave here pretty soon.

Last night, 4 of his counselors from the YMCA afterschool program came by to visit him. He has not seen them since the end of October, so he was really excited. They brought him a huge card they had made that all the kids there had signed. David (one of the counselors) drew a Garfield on it. Jeffrey really enjoyed their visit. They also brought him some gifts, but I think he enjoyed the card the most. He wanted to read all the messages. It was really sweet, but also kind of made me sad to see how much he misses everyone. Thank you to Joey, David, Benita, and Jackie for coming by to see him. He really enjoyed it!!!

Home Healthcare is supposed to be coming out tomorrow evening to show me how to give Jeffrey his G-CSF (is that right?) shots to boost his counts. I have to give him the shots every day for 10 days. GULP. I am nervous about it. I hate the thought of doing it, but I need to be strong about this. I am not that great with needles myself, but I have heard that it is not that bad from other people… I hope not.

Well, I found out some sad news this week. What’s new right? It just never seems to end sometimes. A little boy that actually lives in the same area as us has been told that his brain tumor is back and inoperable. The doctors are saying 3-4 months.

http://www.caringbridge.org/tx/davinrucker

Please go by his site and leave his parents an encouraging message and PRAY!!! I believe in the power of prayer and miracles. It continues to amaze me how uncertain everything in life can be. I sit here in this hospital room and I just don’t understand it sometimes.

The holidays are usually my most favorite time of year. I love the Christmas season especially. But somehow, this year feels different to me. I don’t know if it is because of Jeffrey’s relapse or because of hearing about so many of these children going through what they are. My moods seem to be up and down these days. I suppose this is “normal” for me to feel this way. Jeffrey just told me that since we are leaving today he can go to school tomorrow. It makes me sad to have to tell him he probably cannot go because his counts are not good enough.

Anyways, I am going to end this so I can get back to Jeffrey. Thank you to all who are checking in, it means so much to us and Jeffrey loves to hear the messages that are for him.

Take Care & God Bless,
Chuson

Tuesday, November 25, 2003 1:42 PM CST

Hello everyone. Thanks for checking in. We are still in remission! Yay! AND yesterday was the last spinal tap for 8 whole weeks!!! WOOHOO!!!! Jeffrey was so relieved. It was a long day yesterday. They gave him the Vincristine and checked his counts. His white count is high (wow, after seeing it so low, it makes me nervous that it’s so high!!!!), but the docs say that is to be expected, especially since we are nearing 28 days on STEROIDS!!! Yes, Jeffrey is eating us out of house and home!!!! *laugh* And boy is he moody!!

We went over to the hospital for the spinal tap. (Yay for propofol) He did pretty well. The only bad thing was that the chemo must have touched on some of his nerves in his lower back, near his bottom because he had some pretty bad pain down there after he woke up. He was crying and they decided to give him some morphine. He told me it felt really, really bad and big fat tears were rolling down his face. I just couldn’t stand it. After the morphine, he felt much better and even dozed a little. After he recovered and ate a Popsicle, we got to leave. He was definitely ready to go home and EAT. He hadn’t had anything since the night before and told me he was “starving” and by the time we left it was after 2 pm. So we ran by Long John Silver’s (his choice). He was a happy kid after that! We got home and he said he was tired, so he took a nap. He did fine until about 7:30 that night, and then he threw up everything he’d eaten… THEN he ate 3 slices of pizza. Kids never cease to amaze me.

Today he is a little tired and sore in the back, but he still wanted to go to school. Next week (December 1) we go in for a hospital admission for his first round of Ara-C. Dr. Eames said we would be there for 3 days, and might be able to go home Wednesday evening. She also said his counts will drop because of it, and he won’t be able to go to school, so I guess we will start the homebound schooling next week. Also, according to our schedule, we will be in the hospital December 22, 23, and the 24th. I really hope we will be able to go home on Christmas Eve and spend Christmas Day at home. Please, please, please!!!!

On another note, Troy is sick. We think he has the flu. Send some get well vibes his way. We are trying to stay away from each other as much as possible while he is recovering (to keep Jeffrey from getting sick), but it’s hard and we miss him. He has been sick since Saturday evening. And has missed the last 2 days of work.

On Saturday, we took Jeffrey to the Shrine Circus. It was neat. We left at intermission (Troy was starting to feel badly then, and Jeff wasn’t feeling to energetic either – he gets tired out quicker these days). Jeffrey rode the elephant at the intermission and then said he was ready to go home. Thanks to Paul Roberts for getting us the tickets to go. It was really nice.

I am so saddened to hear of the passing of several children in the past week. Please pray for these children and their families. Cancer is such a horrible monster. I cannot even begin to imagine what they are going through right now. Life is just so unfair sometimes, I just don’t understand it. I just don’t. I’m sorry, I don’t think that is a question of my faith. I do believe that God is Good, and that he can right all things, but I don’t understand who decides. Why do some children survive and others don’t? Why do some children go through so much? I do not think that means that my faith is weak, I think it just means that I am human.

If I do not get a chance to post again, I hope you all have a wonderful Thanksgiving! My wish for you is to have good food, good company, and much love!!! Take a moment and be thankful for the blessings in your life. Jeffrey can’t wait for turkey, and mashed potatoes, and gravy!!! (I did mention he is on steroids, right?!?)

To all of you that care so much and check on us and to all of you who walk our walk,
Many blessings and love to you this holiday,

Chuson

Friday, November 21, 2003 10:50 AM CST

Hello everyone. Sorry for the long delay in updating. Things have been kind of busy and I am just so tired when we do have some down time that I don’t want to get on the computer. Thanks for checking in on us and for all the great messages left in the guest book.

Let’s see, last Thursday, the 13th, Jeffrey went in for a neurological assessment. We want to gage where he is at now, and track him for the next 2 years to note any changes in him physically and mentally. It went pretty well, although it took all day to complete. I have not gotten the official results yet, but she said that he did really well. They ran IQ tests on him, but they also talked to him and had him answer some questions to see where he is at emotionally. It was kind of funny, right after we left, he said, “Mom, they asked me some really crazy questions. They asked me if I thought I was ugly!” I had to laugh. I asked him what he said. He said that there were 4 options and you had to circle the one you thought was right. They were: 1) I think I am ugly. 2) I think I am a little ugly. 3) I think I look okay. 4) I think I look good. I asked him, “Well, what did you say?” He kind of scoffed and said, “Huh, I told them that I think I look good!” It made me laugh so much. :o) He is such a good kid.

Over the weekend, I went to a bridal shower for a friend of mine who is getting married next month. While I was gone, Troy took Jeffrey to the park to play some basketball. Jeffrey really wanted to play during the winter season at the YMCA, but now I do not think that is possible. Anyways, Jeffrey got tired pretty quickly, but he said he still had a good time.

Monday was the dreaded clinic day. I gave him some Vistaril at home to calm him down, but the beginning of the appointment went pretty badly. He was so upset about what happened last time that he did not even want them to access his port. Stellina (the nurse) promised him it would not be as bad this time. The nurses were being so sweet to him and so was Terri, the Child Life Specialist. I think they were really concerned for him because of the hard time he had last time. They got him accessed and started giving him the Zofran and Fentanyl (spelling) with Versedt. But he still was very wound up. After struggling with the doctor and the nurses for awhile, Dr. Griffin said that he could not do the procedure safely. He was crying and fighting too much again, and he would not risk it. So their decision (and I am really kind of relieved about it) is that from now on, Jeffrey will go over to the main hospital for the procedure and he will be put under with propofol and / or sleepy gas. There were no complications from the anesthesia, and he was so much happier and relaxed before and after. It takes a lot longer, but I think it was worth it. We sat with him in the induction room, and then went to the recovery room to wait for him. After about an hour or so, they called us back there and he was waking up. The first thing he said to me when he opened his eyes was, “Mom, I’m having a really rough day.” It was a hard day, but the end result was what we wanted. I think that having him sleep through the procedure is the best choice for us, for him as an individual and for peace of mind for our family. It was so difficult to watch him be so afraid and hurting. We go back to clinic this coming Monday for another spinal tap and chemotherapy.

We stayed home yesterday because Jeffrey was feeling sick. He was vomiting / dry heaving in the morning, and then had a really bad headache that evening. He is also complaining of chest / heart pain, leg pain, and blurry vision. Anyone else experience this kind of stuff?

Now for the GREAT news!!! The latest test results show no traceable sign of the leukemia in his spinal fluid at this time!!!!!! I am so relieved!!! Thank God!!!! The chemotherapy is working and he is now considered to be back in remission!!! Now we just have to work at keeping him there.

All in all, we are doing okay. Thank you to all who have been checking on us. It means so much to me. Thank you for all your prayers, keep them coming!!!!

Please remember all the other children who are fighting their own battles. Hug your loved ones close, don’t take anything for granted. Remember that no matter how bad it gets, you still have many blessings in your life.


Take Care & God Bless,
Chuson

Tuesday, November 11, 2003 10:25 AM CST

Hello everyone. Thanks for checking in.

Yesterday was a really hard clinic day for us. I am still tired from it! We got there at 8, and they took us back to get everything started. Jeffrey has had some problems this past week with stomach pain, blurry vision, headaches, and rapid heartbeat. When they found out he was experiencing this, they decided to do a finger stick and run his blood first, to make sure his counts were okay. His counts came back alright so they decided to go ahead with chemo. Jeffrey was doing fine. They gave him the Vincristine and the Zofran in his port. After that, they took him back to the procedure room, where he started, of course, to become very anxious. They injected the versedt and morphine into his port, and the instant the medication got into his system, he started crying. He said his body parts were hurting and that he felt funny. They waited awhile and tried to bend him over to do the spinal tap, but he was very hysterical and started fighting and screaming. They kept trying to get him to calm down, but he wouldn’t. He was crying and saying that everyone was hurting him. They tried to reposition him again, but he fought it even more, and then, if you can believe it, he fought so much that his line broke. They had to bend the line to stop his blood from coming out of his port, and then had to take the needle out. He started crying harder saying, that now he wasn’t going to get the sleepy medicine and it would hurt more. It was awful. He was screaming as loud as he could and fighting so much, and the nurses finally got him still enough and the doctor had to stick him 3 times to get the needle in right. After that, I think Jeffrey just gave up, and he just lay there sobbing and asking over and over again if it was done. I am so sad about the whole thing. I hate this so much. I hate it, I hate it, I hate it! I hate having to stand there and watch them do this to him. I hate having to take him there for treatment, knowing that this is how he feels. He has been stuck 4 times in the last 2 weeks. Three spinal taps, and one bone marrow aspirate. His poor back has not had a chance to heal. And he still has to have 2 more done in the next 2 weeks. I am so sick to my stomach, and I am so MAD. I was praying so hard for God to just give him some relief in that room. To take away some of his fear. I know that there is a reason for everything and that I need to trust in the Lord, but I can’t help but wonder why? What was the purpose of my baby going through what he did yesterday with so much fear and anxiety? I am so MAD and SAD. They said next time they are going to give him some different medicine to sedate him. They are hoping it will be better. Please God, let it be better. Afterwards, he was okay, and they gave him the daunomycin. He laid there and watched Scooby Doo, until it was okay for him to get up. They had ordered lunch for him and he ate it. Afterwards, we went home. We both laid down and rested some. He seemed to feel better at around 4, and we got up and played Uno and some video games. He wanted spaghetti for supper, so I made it. We all sat down for dinner together (Troy had gotten off of work by then) and just relaxed afterwards. We had Reese’s Peanut Butter cups after dinner (Troy’s and Jeffrey’s favorite).

Today his back is still sore, but he wanted to go to school. He said he felt good. We go back to clinic on Monday, the 17th for another round of chemo. This Thursday, the 13th, I am taking him in to have some neurological testing done. To see where he is at now, and then next year he will have it done again, and then again at the end of treatment.

We saw Brother Bear this weekend. It was a good movie. Very sad at some points, but of course had a good ending. We also went to Jeffrey’s school carnival. He had a good time.

The good news is that his doctor called last night and told us that the blast count is now down to 50%. Go away blasts!!!!!

Take Care & God Bless,
Chuson

Wednesday, November 5, 2003 1:13 PM CST

Hi everyone. Thanks for checking in.

Jeffrey went in this past Monday to start his new protocol. They did a spinal tap and injected the chemotherapy into his spine. His fluid came back with 78% blasts, so Praise God! That is a good thing. Since it went down from 90%, that means the cancer is not resistant and the chemo has a good chance of putting him back into remission. I am so relieved. He also got a push of Vincristine in his port and his first dose of the daunorubicin. He was such a trooper. The sedated him again for the spinal, but he still cried and put up as much fight as he could. It made me so sad. Afterwards, we went home. When we got there, he told me he felt very sick, and threw up. He felt pretty rotten the rest of the day. He had a few spurts here and there where he felt good enough to sit up, but he said he felt better when lying down. Later that night he had quite a bit of stomach pain. He was also running a low grade fever, but it never got to 101. I just monitored him all night and it went back down at around 3 am. He also started steroids on Monday, and boy are they kicking in! The positive thing is that the chemo is working and that the numbers are headed in the right direction.

The very good news is that when he feels good enough he can go to school this week and next week. At that point they will reassess him and see if his counts are still good enough to go. Dr. Griffin said counts usually start to bottom out at week 3. So he went to school on Tuesday and he is there today. I pick him up at around 3 every day from now on when he can go. Mrs. Oakley says they are willing to accommodate him 100% at school. I love his school. They are so wonderful! I filled out all the homebound paperwork so that when he does have to stay home he will not miss out.

I have still not worked out what to do about work yet, but I know that efforts are being made to help me out in that area and for that I am so very grateful.

Jeffrey is not doing that well emotionally right now. He is very sad about missing school and I think the steroids are doing a number on him. He is crying frequently over things he normally would just blow off (like losing at a video game). He is also constantly saying “I can’t” – when it comes to doing things he has always done well before. I am not sure how to handle this… It is so hard for me to see him struggling so much with things. He has also reverted to acting younger than he is. Not that I mind having a child that wants to cuddle, it just makes me concerned about what is causing it. Any suggestions on how to deal with this would be greatly appreciated.

Last night, some people from my bible study came by with dinner and to pray for Jeffrey. It was very uplifting, and I feel so much better for it. God is Good, and He will get us through this. They prayed for Jeffrey, and afterwards, Jeffrey got up and gave me a big hug and the sweetest smile. He knows that so many people care for him. I think it meant a lot to him.

I would like to ask that you all pray for Troy and I. We really need some strength right now. We are trying to be strong (and Troy is better at that than I am), but I can tell it is taking a toll on him as well. He is usually so cheerful and optimistic and I have seen changes in him. Cancer is just so terrible. It is affecting all of us so much.

We go back Monday, bright and early for another round of treatment.

Thank you all for all your prayers. They mean so much to us.

Take Care & God Bless,

Chuson

November 1, 2003 5:28 pm mini update

I will leave yesterday's update up just in case some of you have not had a chance to read it, but I just wanted to tell you all about Jeffrey's wonderful night. Last night we went to our church's "Alternative-Halloween" carnival. It was so much fun. We are truly blessed in that so many people care for us. They kept coming up and letting us know they were praying for us, etc. Jeffrey had a wonderful time. He rode the horse at the pony rides. The boys in front of him wanted to wait for the little pony, but Jeffrey said he was a big boy and he would ride the big horse. It was so cute. We played carnival games, and he went in the bounce house and the slides. This morning, Jeffrey and I got up really early and went and grabbed some breakfast. Then we went to his last baseball game of the season. He had a really good time, and I was so emotional, because his Kindergarten, first grade, and second grade teacher came out to support him. Jeffrey has been so blessed with his school. They are so supportive, and he gotten a truly wonderful teacher each and every year he has gone there. Mrs. Carol Neff (K), Mrs. Judy Alford (1st), and Mrs. Nancy Oakley (2nd) - thank you so much for your support. You will never know how much it meant to me to see you out there today. Jeffrey loves each of you so very much.

I am so nervous about Monday! Please pray for us!!!!!
______________________________________

Friday, October 31, 2003 9:36 AM CST

Hello everyone. Thanks for checking on us. I am sorry it has taken me so long to update.

Monday was my worst nightmare coming true. Jeffrey has relapsed in his central nervous system. The bad news is his spinal fluid had 90lasts. The good news is, his bone marrow aspirate that he had on Tuesday came back clear. Thank God!!!!!
We had just gotten home from having the Lumbar Puncture with methotrexate and Jeffrey was lying down and resting, when the hospital called. I really felt like I had the air sucked out of me, I couldn’t even talk at first. I couldn’t believe it. I was shaking so badly. They told me I had to bring Jeff back in the morning to test his marrow and to discuss the next steps to take. I called Troy immediately, his disbelief was as apparent as mine. I am so very tired, and Troy, who is usually so upbeat and the one who usually cheers us up, is showing the strain as well.

Tuesday, Troy and I took Jeff in. They gave him some versedt (spelling) and morphine before they did the bone marrow aspirate. I am so glad they did, it made it so much easier on Jeffrey. We waited for the results to come back. It was nerve wracking to say the least. Luckily, it is not in his marrow. We are now waiting on one more testing of the spinal fluid that they will take out on Monday. Since they gave him the methotrexate in his spine on Monday, the amount of cancer cells in the CNS should have gone down considerably. If the numbers are still really high, then that means we are fighting a resistant form of the disease which is more serious. Dr. Griffin seems optimistic in thinking that is not the case. He feels more that it is a case where some of the cancer cells escaped the chemotherapy that he did get and crossed the blood brain barrier into his CNS and multiplied there. I am praying that is true as well. I am being driven crazy by all this waiting and not knowing…

Thursday morning we ended up going to the ER. Jeffrey had gotten very sick (headache and vomiting) the night before, and in the morning he was sweating profusely and kept saying he was so hot and his stomach hurt. After 4 hours in the ER, they said it was probably due to spinal fluid leaking out (his lower back was very puffy) and causing a spinal head ache which led to the vomiting and after affects. We were released around 10:30. I took Jeff to IHOP for pancakes (his choice) and then took him to school – he really wanted to go since this is his last week.

How are we holding up? That is the million dollar question. Monday, after I found out and called Troy, he came home. We were sitting there and he says let’s go do something. Jeffrey says he would like to go play miniature golf, so off we go. Maybe some of you think it is strange that we went to do something fun after finding out this horrible news, but in all reality, after this Monday, we may not have the opportunity to do something “fun” again for a long time. Jeffrey had a wonderful time, and we let him do everything. We played a round of golf, had ice cream, played the games in the arcade, let him spend his tickets he won, rode the go carts, and hit some balls in the batting cages. He had a great time, and even though I couldn’t stop thinking of the cancer it did us good to see Jeffrey having a good time and laughing. We are trying to keep him happy this week and do fun things with him. He is very sad that he is not going to be able to go to school anymore. It breaks my heart when he tells me he is feeling “left out” already thinking about all his friends at school without him. That is his biggest concern right now is that he is going to miss out on things. I cannot begin to tell you how MAD and SAD I am right now. We were so close to being done and now we have to start all over. I am furious at the unfairness of it all. I want to kick something and just scream… but I can’t. Jeffrey has been fighting this for 2 years and now it will be even longer. The new chemo is far more aggressive, more intense, and more toxic. He will have to undergo radiation to his head and back this time. I am terrified. And every time I think about it, I feel like someone has punched me in the stomach and I cannot breathe.

I don’t know what we are going to do financially. I am not sure who can stay with Jeffrey when I come to work. It is all so chaotic right now. I will take next week off, and then try to come in when I can. My employer is being so understanding and I appreciate it so much, but I have no paid time off left and am unsure of how we are going to do it.

Please, please, please send lots of prayers our way. I am so tired and need some strength to go on with this battle.

We are going to the church for Halloween Carnival and Jeffrey also may trick or treat a little. Tomorrow is Jeffrey’s last baseball game and party to hand out trophies.

Monday we start the battle once again. I am so tired and my mind is filled with so much stuff to think about, I am sorry if this entry does not make any sense.

Hug your children close. Do not take anything for granted.

To all those who walk our road and to all those who support us in our walk,

Take Care & God Bless,

Chuson

The Battle Belongs To The Lord

Monday, October 27, 2003 9:19 PM CST

I don't even really know how to say this, but Jeffrey has relapsed in his Central Nervous System.

I am so angry and so scared right now. I am so mad I want to scream and kick something. And I am so scared I feel like throwing up.

Please pray for us. We are due at the hospital at 8 am tomorrow for further testing and a meeting to decide what to do now. I don't know what is going to happen. I feel so lost...

I will update when I can.

Take Care & God Bless,

Chuson

Thursday, October 23, 2003 2:37 PM CDT

Hello everyone! Thanks for checking in on us. Things here are pretty well. Jeffrey went to clinic this past Monday, and his counts came back fine. I don’t have the exact numbers with me, so I will have to update that later. We do, however, have to go in this coming Monday (the 27th) for another of those dreaded spinal taps. I can’t stand those things. I feel so sorry for him sometimes. Children should be playing – not fighting cancer!!!!! It makes me so mad when I think about everything that he has gone through. I know that this will make him stronger, but it still seems so unfair to me. I would much rather he get stronger in a different way!!! He always gets so anxious when he has to go to clinic for these. Please pray that it all goes smoothly and we are not there any longer than absolutely necessary!

Let’s see…. We did baseball on Saturday and Sunday. We had a make up game for a rain out. We also went to Troy’s company picnic on Saturday. That was nice. Troy also had a flag football game on Sunday, but Jeffrey and I only caught the first 15 minutes before we had to head to the other fields for his baseball. Jeffrey played short stop and first. He got a kid out on 2nd by stopping a ground ball and then running the ball over to 2nd. He also played 3rd and tagged a kid out (on the Saturday game). We have baseball again this Saturday, but Jeffrey will not make the game, because we are going camping with Scouts! It should be fun, they are having a family campout called Fall Fest. They will have hayrides, and pumpkin carving, and other games / activities. We are supposed to camp out that night, but there is a cold front moving in this Saturday morning with rain, so am not sure if we will actually stay. It is supposed to be a high of 90 on Friday, and then a high of 65 on Saturday… That’s Texas weather for you!
We might have a make up game on Sunday again, but not sure about that yet. I’m sure they’ll find out about that this evening at practice.

There is not much else going on here. Did I tell you that Jeffrey made the A Honor Roll? I can’t remember! :o) He had an awards ceremony for the first 12 weeks of school and he got perfect attendance award, good citizenship award, and the ‘A’ honor roll award. Very cool.

It is finally starting to cool down here, I am ready for the fall weather. I need to go get Jeffrey some fall clothes. I swear his legs grow so much! The bad thing is, his legs get longer, but he doesn’t get any wider. It is so hard to find pants that fit him. Thank goodness for belts!

Well, Halloween is just around the corner. What are you and you families planning on doing? I think Jeffrey has decided to not go trick-or-treating this year. I think we are going to go to our church’s “Alternative Halloween” Carnival. They are going to have all kinds of games, and hayrides, and even pony rides I think. It should be fun.

Well, take care and I will try and update soon after his clinic appointment on Monday.

Take Care & God Bless,

Chuson

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

Tuesday, October 14, 2003 2:17 PM CDT

CHECK OUT OUR NEW PICTURES!!!!!!!!

Hello everyone! I hope this update finds you all doing well. Things here are pretty good. We had a wonderful long weekend, and to be honest, I was disappointed when it was over! AND I updated our pics! Can you believe it? I know it has been forever. But, we took some really good pictures this weekend, so I am excited to share them with you. Now, I couldn't figure out how to add more than 3. So I guess I will update them a little at a time. I am a little disappointed, because choosing 3 was way hard, and I have so many good ones to share!!!!

Friday night, Troy and I played in our coed softball game, and we won our very first game! Yay! Jeffrey was very excited for us. He enjoyed playing with the kids as always. It was a lot of fun. Saturday morning, I took Jeffrey to get his haircut and to get some new baseball cleats. His feet grow so fast! I got him some that were a little bigger this time to give him some room to grow. Then we got ready and went to the ball field early for baseball pictures. His team played at 1:30. Unfortunately, they lost their first game of the season, but they were all really good sports about it. The other team was extremely good, and our batting was not up to the norm. It was definitely a good and challenging game. The kids had fun and that is what counts. After the game, Troy and Jeffrey rotated the tires on my car.
Sunday, we went to a Fall Fest sponsored by the Children’s Hospital. It was fun. Jeffrey made some cute crafts and had a good time watching the show and sliding down the hill on a piece of cardboard. The kids had a good time, and it was really nice. After that was Cub Scouts. They made bird feeders with a pinecone, peanut butter, and birdseed. It is now hanging off of a tree in our front yard, and Jeffrey is constantly checking to see if any birds have come by. He says he doesn’t think they have, but, judging by the uh, well, bird poo on my car, I’m going to have to say, I think the birds are coming by!

Monday, Troy and I both took the day off and took Jeffrey to the State Fair. It was a lot of fun, tiring, but fun!!! Jeffrey was off from school because of Columbus Day. We got there around 11:30 and left around 6. We were exhausted. We saw many neat exhibits and played some games. Jeffrey won himself a little stuffed dog. Jeff also climbed a rock wall that was sponsored by Ford. He made it all the way to the top and rang the bell. He was so proud of himself, and I was proud of him too. He tried so hard to make it! I have serious doubts on whether I could make it to the top (I’m too chicken to even try), but HE DID IT!!!! And we of course, ate quite a bit of Fair Food (corny dogs, turkey legs, funnel cake!) YUMMY. Jeffrey fell asleep in the car on the way home. Poor Troy had to go play a softball game (which they won) immediately after we fought the Dallas traffic home (well he was driving, so I guess he fought the traffic!). I know he was so tired.

Anyways, no new medical news. We go to clinic October 20. I just wanted to share our weekend with you. Hug your children close.

Take Care & God Bless,
Chuson

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

Friday, October 10, 2003 10:30 AM CDT

Hello all. Thanks for checking in. Things here are okay. We are just steadily moving along. Jeff’s counts are as follows:

White 2.8
%Segs/Neuts 52
Hemo 12.9
Platelets 265K

All in all, they are pretty good. Dr. Griffin says Jeffrey is doing well medically.

Last weekend, Troy went to Alabama for his college homecoming. Jeffrey and I went to my softball game on Friday night. Jeffrey had a great time playing with all the other kids out there. Unfortunately, we lost our game 5 to 9. Our Friday team has not won a game yet! My Thursday team, however, is tied for first. Our game last night was rained out so we’re off a week. Saturday, Jeffrey had a baseball game. My mom came up and we all went out there together. It was fun. It is the first game she has gotten to see this season. Jeffrey played well, and I’m not sure of the score, but I think his team won again. That evening, Jeff and I went with some friends to the Cheese Cake Factory in Dallas. It was YUMMY. The wait to get a table was extremely long (our group was rather large), but it was still fun. It was really nice to see my friend Tammy. She is someone I met through Home Group, and is actually a very new friend. When I met her, she was transitioning between jobs. She had to choose between two job offers, one in Dallas at the Scottish Rite Children’s Hospital, and the other on the East Coast. She was conflicted and did not know which job to take, as both were very good job offers. One job worked with adults and the other with children (she is a physical therapist). Anyways, at dinner on Saturday, she told me a very touching story. We had gone to Home Group which is a bible study of sorts the day before she had to make her decision on which job to take. And somehow, her and Jeffrey ended up sitting on the couch together alone, everyone else was in the kitchen or somewhere. He didn’t know her that well, so he was sitting on the opposite end of the couch playing his game boy, and so she introduced herself. Well, Jeffrey usually takes to nice people very quickly (especially females) and in about 5 minutes he was practically sitting in her lap! Also, that week, he was on steroids, and so he was ravenously hungry. So she asked him why he was so hungry and he told her, and that eventually led to him telling her he has cancer. She said that she was so touched by his personality and his story, that she decided that she needed to work with children and decided to take the job in Dallas. She felt like God had led Jeffrey to her to help her make her decision. I thought that was so sweet.

Sunday it was pouring rain when we got up. We had to pick Troy up from the airport at 2:30. Jeffrey was so excited to see him. I think this is really the first time that Troy has been away in a very long time. Jeff kept saying he missed him and was ready for him to come home. You would have thought he was gone for weeks! Troy brought us all matching t-shirts from his university. I thought that was very nice. Jeffrey actually wore his to camp today. We went to Scouts that evening, and then picked up dinner and watched a movie. It was a nice weekend.

Monday was clinic, and I had class. Tuesday, Jeffrey had baseball practice. Today and Monday, Jeffrey does not have school. I guess they are having a small fall break. I know Monday is Columbus Day. I am taking off work on Monday and I think we are going to try and do something fun as long as the weather holds out. It has been rather rainy and gloomy this past week around here.
Well, I think that I have officially reached the breaking point in my stress level. I have been having the strangest dreams lately… I’ve dreamt that I’m forgetting to be places and do things I have to get done. Last night, I dreamt that we were at my parent’s house, and I realized at 1:15 that Jeffrey had a 1:30 baseball game. And I am running around trying to get there. It was so crazy. And then previously I dreamed that Jeffrey’s biological father had bugged our entire house and was spying on us trying to find a way to take Jeff away. And I am running around the house pulling the wires on these bugs. I’ve also had dreams that Jeffrey relapsed. Which most of you know, is the worst nightmare we can imagine (some of you are living it). I think that I am just stressing because Jeffrey is supposed to go see his Dad this Christmas and I am concerned that he will not get his medication again. And the really bad thing is, there is nothing I can do about it. I am so frustrated and I feel so helpless. *sigh*

I am ready for this weekend to start. We are supposed to have a softball game this evening, but it may be too wet to play. Saturday, Jeffrey is supposed to have baseball pics and a game. Sunday, we are going to a Fall Festival for the children’s hospital. We also have scouts that day.

Well, I hope you all have a wonderful and blessed week.

Take Care and God Bless,

Chuson

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

Tuesday, September 30, 2003 11:43 AM CDT

Hello everyone! Sorry for the long delay in updating. There has been so much going on that I don’t know whether I am coming or going! *laugh*

Jeffrey’s counts are good.

White Count 4370
%Segs/Neuts 60
Hemo 12
Platelets 275K

We go back to the doctor October 6.

Let’s see… Thursday night Jeffrey had baseball practice. Troy said he did well. Saturday morning, we went to a fishing tournament sponsored by an organization called Cast for Kids. It was a lot of fun. Fishermen (professional and some others who fish regularly) volunteer their time and their boats to take some of the kids from the hospital out on the lake for a day of fishing and fun. It was great. We were paired with two guys, Tony and Jim. They were both very nice and made it nice for all of us. They also mentioned taking us fishing at Lake Texoma (did I spell that right?) sometime in the future. I think that would be great. Tony told us he had been treated for Non-Hodgkins Lymphoma a couple years back, but is in remission now. Jeffrey was very excited to fish. We, unfortunately, did not catch much (Troy caught one very, very small fish). Many of the kids there did not, so they took the kids who didn’t out to a trout line and let them draw numbers to get a fish. They had 3 different categories: Bass, Catfish, and Perch. Jeffrey’s perch was the biggest, so he gets a trophy – which is actually a perch mounted on a plaque. The taxidermist said it should be ready in a few weeks. The mayor of Fort Worth, Mike Moncrief was out there with his wife. His son, Troy, actually organized the event. It was fun. After that, I had to come into work for about 4 hours because we had a big project going out first thing Monday (let me tell you, I was exhausted!). Troy and Jeffrey hung out for awhile. When I finally got there Jeffrey was out riding his bike while Troy worked on the lawn. Then Troy took Jeffrey bike riding for a little while. Afterwards, we went to dinner. It was a good day.

Sunday, Troy’s church had a huge event at Six Flags. They do a service there at Six Flags, and then afterwards, we rode some rides in the park. Jeffrey is at that age, where he is getting too big for the kid rides, but is still too short to do the really good rides. To ride Batman you have to be 52” tall. Jeffrey is 48”. So, we rode the Mine Train and Runaway Mountain. Which, he was kind of scared to do Runaway Mountain, but afterwards, said it was his favorite ride. :o) It was pitch dark, and definitely an adult roller coaster with loops and everything. But he did really well. Jeffrey and Troy played a couple of games. Jeffrey won a stuffed fish, and Troy won a dog. It was a fun day. We left at around 3:30 to make Jeffrey’s baseball game at 4:30. They won and Jeffrey played well.

The weekend was so hectic and exhausting, but definitely lots of FUN!!!!

As far as the whole thing with Jeffrey and his dad not giving him his medicine. CPS called and said that they cannot prove that his dad intentionally did not give him the medication. They said that it seems like that is what happened, but without solid evidence they can’t prove it. So much for the system helping. As far as I’m concerned, all they did was show him he can get away with it. If I sound disgusted, it’s because I am.

Well, that is all the new news for now.

Take Care & God Bless,

Chuson

Tuesday, September 16, 2003 2:04 PM CDT

Hello everyone! Whew, we had a busy, but really good week.
It rained Thursday and Friday, so Jeffrey’s baseball practice was cancelled. And then of course, so was his game on Saturday, due to the fields being so wet. He was disappointed, but recovered quickly. :o)

Friday, we went to a friend’s birthday party. It was at the bowling alley, and it was with a fun group of people from my church. We bowled 5 games and then Jeffrey played a couple of the arcade games. It was late by then, and I was ready to go home. Some of the guys played laser tag. Anyways, Jeffrey had a blast. There are a lot of guys from church that enjoy playing with him, and I think it is good for him to have that male exposure (although it makes me nervous when they are rough housing with him sometimes!!!! I am afraid they might drop him!!! *laugh* I know, paranoid Mom here). So that was a lot of fun for us.

Then on Saturday, we ran around all morning trying to get his baseball pants and socks, etc. of course, only to find out that his game was cancelled. Oh well, what can you do right? The weather was pretty nice though (if not a little humid), and that evening, we did the Light The Night Race in downtown Fort Worth. It was GREAT. We had such a good time. Many of my coworkers came out, and a very large group from my church was there also. Jeffrey had a wonderful time. Troy, Jeffrey, Rachel, Scott, and I ran the 1K together. Jeffrey did great at the beginning, but his energy kind of petered out, so Troy ended up having to pick Jeff up and carry him for the last part of it. He put him up on his shoulders and off they went. They (Jeffrey, Troy, and Scott) crossed the finish line together (and ahead of Rachel and I!!!). Some of the others ran the 5K (which is a competitive race). My coworker (actually, he is my boss, but he hates when I call him that), Dave, ran the 5K and he finished with the 2nd best time for his category! I was so excited for him. He ran 5K in 20 minutes and 19 seconds! Woo, that makes me tired just thinking about it. The trophies were pictures that cancer kids had drawn that had been framed with a little gold plaque on it. They were really neat. A little paragraph about the child who drew the picture was on the back. Each plaque had a different picture on it. They had music, and free food, and just lots of fun for the kids and runners. They handed out glowing necklaces to the kids who were either on treatment or had been on treatment. Motorola was a big sponsor, and gave the cancer kids Disney Walkie Talkies. It was a great event, and we are already making plans to do it again next year. Thank you to all those that came out. Cancer is such a horrible monster, and we need all the help we can in fighting it.

Sunday was another rainy day. Cub Scouts was that afternoon. Jeffrey really enjoys that. And he got picked to carry the flag at the pack meeting this Thursday. He was very excited. So, now I have to make sure his scout uniform is all put together by then. (He has only been wearing his shirt to the Den meetings.) He is scheduled to have baseball practice also on Thursday, but we will just drop by to pick up his shirt and cap.
So now it is the beginning of another week, and frankly, I am already ready for the weekend.

Jeffrey scored 105n his spelling test. Yay! He got all the words right, plus the 5 bonus words. I am so proud of him. He loves school and tries so hard. I always worry about what the chemo is doing to him physically and how this will affect him later….

Jeffrey’s cub scout den is trying to get tickets to go to the Blue Angels air show at the end of the month. I think that would be a fun treat for them.

Well that is about it for now. Please remember to say a prayer for all the children out there fighting their battles. They are true warriors in their fight to survive.

Hug your children close. Don’t take anything for granted. Until next time…

Take Care & God Bless,
Chuson

1 Corinthians 13:13
“And now these three remain... faith, hope, and love. But the greatest of these is love.”

Thursday, September 11, 2003 10:23 AM CDT

Hello everyone. Thanks for checking in.

Jeffrey went to clinic on Monday, and his counts were back up. Yay. So we resumed chemo on Monday night. And then of course, he was sick on Tuesday. *sigh* He made it through most of the day, and then Joey from the YMCA after school program called me and said Jeffrey’s stomach was upset and he was not feeling well. I picked him up and on the way home he started vomiting. Poor kid. I feel so sorry for him when this happens. Cancer sucks. He felt better after throwing up and ate a whole bowl of spaghetti for dinner. Kids bounce back so well it still amazes me. We go back to clinic on the 22nd.

Well, it keeps threatening to rain here. Jeffrey is supposed to have baseball practice tonight, but we’ll have to see if the weather holds out. He will be disappointed if it is cancelled. He loves baseball.

We are doing the Light The Night Run this Saturday in honor of Jeffrey and all the other children fighting this damn disease. Many of my coworkers are running / walking as well, and I am happy to have gotten a team together. Jeffrey will be walking as well. It will be a lot of fun for a very worthy cause. I often wonder, why, with all the technology and medical discoveries that have occurred, why there has been no breakthrough in finding a cure for cancer. And why is cancer on the rise and not the other way? What is causing all of this? When Jeffrey was first diagnosed, my biggest question other than his prognosis of course, was WHY??? Why did he get it? What causes this to happen? How can this be prevented? These are questions that I may never have the answer to. Pray that a cure is found soon.

Don’t forget that September is Childhood Cancer Awareness month.
Here are some childhood cancer facts that I thought were interesting.

· Currently, one in every 330 Americans develops cancer during childhood or adolescence, before the age of 20. On the average, 46 children and adolescents are diagnosed with cancer every weekday in the United States.

· On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.

· Childhood cancer as a group is the sixth most common type of cancer in the United States; it is exceeded in incidence per population only by cancers of the lung, colon, breast, prostate and bladder.

· Nationally, the incidence of cancer in children is more than 20 times greater than the incidence of AIDS in children.

· American children are more likely to develop leukemia, lymphoma, brain tumors, neuroblastoma, Wilms’ Tumor or a sarcoma than to develop HIV/AIDS.

· Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.

· Cancer in childhood occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region.

· The cause of most childhood cancers are unknown.

· At present, childhood cancer cannot be prevented.

· In the United States, the incidence of cancer is increasing among adolescents and young adults at a greater rate than in any other age group, except those older than 65 years. The cause of this increase is unknown at present.

· Relative to the rate of increasing surrival in children, the treatments for adolescents with cancer generally do not produce as favorable cure rates as for younger children.

Even though research has come a long way, we still have a lot of work to do to get rid of this monster...

· Little progress has been made in the prevention of childhood cancer.

· Attempts to detect childhood cancer at an earlier stage, when the disease would react more favorably to treatment, have largely failed.

· Several childhood cancers continue to have a very poor prognosis, including brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Cancer kills more children than any other disease.

Got to this website for more information.

www.childhoodcancerawareness.org/welcome.asp

I will update soon.

Take Care & God Bless,
Chuson

Thursday, September 4, 2003 1:45 PM CDT

Hello out there. I hope you all had a great Labor Day Weekend. Our weekend was pretty fun. Friday, we went to softball practice. Saturday, Jeffrey went to a birthday party. That night, another birthday party for him, while Troy and I went to a comedy show with some friends. It was over by 10, so back home to get Jeff afterwards. Sunday, visited with my Mom. Monday, we just vegged all day and watched movies and played games. I think (including cartoon videos) we rented about 8 videos from Blockbuster. It was a nice relaxing day. Troy cooked out on the grill, and made mashed potatoes and corn. (I did not help at all) It was great. So, this week, back to the daily grind. *sigh* Someday, I am going to hit the lottery…

Well, Jeffrey had clinic yesterday. There’s good news and bad news… (Don’t you just LOVE that phrase????!!!!)
The good news is that his white count came up. So now his ANC is back up to around 1000. The bad news is his platelets are now at 48,000. Last week, they were at 400,000. All I have to say to all that is, “AHHHHHHHHHHHHHHHHHHHHHHHH!!!!” Although the words, “what the heck?” do come to mind as well. So, since platelets have to be above 75,000 for him to get chemo, no chemo this week, and we go back to clinic on Monday. *sigh* They said that his counts should have rebounded by then. If they haven’t, they will start investigating why. That is all for medical news.

CPS News: No news. They still have not gotten around to talking to the doctors at St. Jude’s which is where he was going for clinic appointments while he was there. To be honest, it doesn’t look like they are going to do anything about all this. The lady from CPS up there that has been investigating this, sounds like she thinks this is just a tail chasing episode. In other words, you never actually get to where you want to be. The closer you get to the goal, the further away it moves.

Jeffrey starts baseball tonight. They are having a team meeting / practice. The very first one of the season. The official season starts September 13. I have no idea what the schedule looks like yet, but I am hoping for afternoon games. We’ll see I guess. Then this Sunday afternoon, Cub Scouts starts back up. They are having there first Den meeting this Sunday (and they’ll meet weekly). The meeting is at 4. Troy says he can’t believe they scheduled scouts on Sunday afternoon during football season. :o)

September is Childhood Cancer Awareness month…

Here are some childhood cancer facts that I thought were interesting.

· Currently, one in every 330 Americans develops cancer during childhood or adolescence, before the age of 20. On the average, 46 children and adolescents are diagnosed with cancer every weekday in the United States.

· On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.

· Childhood cancer as a group is the sixth most common type of cancer in the United States; it is exceeded in incidence per population only by cancers of the lung, colon, breast, prostate and bladder.

· Nationally, the incidence of cancer in children is more than 20 times greater than the incidence of AIDS in children.

· American children are more likely to develop leukemia, lymphoma, brain tumors, neuroblastoma, Wilms’ Tumor or a sarcoma than to develop HIV/AIDS.

· Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.

· Cancer in childhood occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region.

· The cause of most childhood cancers are unknown.

· At present, childhood cancer cannot be prevented.

· In the United States, the incidence of cancer is increasing among adolescents and young adults at a greater rate than in any other age group, except those older than 65 years. The cause of this increase is unknown at present.

· Relative to the rate of increasing surrival in children, the treatments for adolescents with cancer generally do not produce as favorable cure rates as for younger children.

Even though research has come a long way, we still have a lot of work to do to get rid of this monster...

· Little progress has been made in the prevention of childhood cancer.

· Attempts to detect childhood cancer at an earlier stage, when the disease would react more favorably to treatment, have largely failed.

· Several childhood cancers continue to have a very poor prognosis, including brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.