Journal History

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Friday, February 27, 2004 7:03 AM CST

Hi- Well we did it. Jackie got her port out. Mom and Paul and I drove up to St. Louis the night before because we had to be at the hospital at 6:00 AM. Her surgery was at 7:30. She was out at 10:30. She also had her dental work done and the dentist pulled her two loose front teeth. He told us that the x-rays showed a beautiful set of permanent teeth coming in. He said I do believe in the power of prayer. She tolerated the sugery well. the minute we walked in the hospital room, though she lost it. The nurse sedated her it was so traumatic for her, the grown ups, too. We were home by 2:00. I shouldn't complain about getting her port out. I really feel blessed that we are able to do it. I don't take it for granted. Jackie's counts were strong yesterday. WBC 6.2 HCT 39.4; Hgb13.6 PLT 238 Segs 59. She recouped from the surgery! She still has her stitches in. They will disolve. She also has a beautiful new Barbie bike. Paul got it that afternoon.

Thank you for your prayers and caring. Dede

Monday, February 2, 2004 7:33 AM CST

HI:

We were blessed with strong counts last Thursday. ANC 4800; WBC 7.8; HGB14.1; PLT 220. We do not take these for granted.

Jackie is thankfully getting stronger by the day. She is walking beginning to walk independently around the house, now. She is so proud of herself and we all are so proud of her! And she's adorable!!!

This Wednesday my mom and dad are going up to St. Louis for my dad to have a surgical check-up of his vocal cords. We'll all be glad to get the reassurance that everything is OK. Grandma Roth is coming down to take care of Jackie while Nana and Papa are at St. Lukes. We are very lucky. Thank you!!

Jackie is scheduled for surgery to get her port out and have some dental work on February 16. We just want to get February over with. Jackie will literally hate every minute of this. We'll all be doing our best to comfort her and make her smile or at least try to keep her from falling apart. I wish we could give her the anesthesia before we get to the exit ramp.

Please say a prayer for uneventful procedures for both Jackie and my dad and continued good health forever. Love and prayers, Dede

Please never forget all our people, young and old, friends and family who have fought this fight. We recently lost a friend in Tricia's grade to bone cancer. I talked to his mom yesterday before the Superbowl because I knew they would be grieving thier son's loss as they watched that game without him. One of the things his mom said to me, "Tell your children you love them everyday."

Friday, December 26, 2003 10:14 AM CST

Hi;

I hope you all are having good holidays. We are really enjoying a lot of blessings this Christmas. Jackie had a 4 month oncology check-up on the 23rd. Her approx. ANC is 46,00; HGB14.2; PLT 253; ALT 61. Her liver was within normal limits.(0-50 is normal) We are so thankful. We also had a good outcome at our orthopaedic check-up.

The whole day was so traumatic for her. She lost it when we hit the ramp. And kept crying until her ortho Dr. stuck her hands in front of Jackie's face and said, "Look Jackie, I don't have anything in my hands to hurt you." Then she started to talk about Santa. That helped. All the quality entertainment and tap dancing and driving my mom provided took the edge off for Jackie, too. We are so lucky to have her. THANXXXXX MOM!!!!!!XOXOXOXOXOXOX Jackie got 2 finger sticks that day which she did not appreciate. But, when she saw her beloved Onc. Dr., she sang him- We wish you a Merry Christmas, walked to him, laughed with him and smooched him on the cheek!! He loves her a lot, too. So, I am glad that her Dr.'s were able to take the trauma out of the situation. Hopefully, she will grow to dread those visits less as time goes on. Jackie will have surgery to get her port out in Feb. along with some dental work. I will be glad to GET IT OVER WITH. We'll wipe the trauma away with as many good things as possible.

Christmas really got her mind off her visit to the hospital. It was great. I will never take any of this joy for granted. We had a great time with both sides of our family. We went to our niece/God child Sarah's (Laura's)graduation in Rolla. Talk about brain power. fwoo. Chemical Engineering- Summa Cum Laude. Robbie, John and Meaghan and Bill were there. Moose and his parents were there too. We had a super great visit. What an accomplishment. We are all so proud of you Sarah!!!!!!!

I hope you all are doing well. Thanks for keeping up with us. It is so hard to coexist with this day by day existance. I hope that we can have strength and faith and will never be immobilized by our huge fear. My mind always goes to our friends and family who have lost precious ones. We will never forget. We pray for you and hate the loneliness that looms. I hope for strength for you. I hope this New year will bring only good to everyone. Love, Dede

Sunday, November 30, 2003 10:34 AM CST

Hi-
We got a scanner! NEW PIX IN THE PHOTO ALBUM!! We're tryng to figure out how to make them smaller!!

We were blessed with strong counts the day before Thanksgiving. WBC 9.7; Hgb 13.7 HCT 40.; PLT 281; Segs 72Bands 4Lymphs; 18Mono's 4osins 2ANC 7,372. Our Oncology nurse said they want WBC to be between 5 and 15 thousand. She was happy about the counts, so I felt better after talking to her. Jackie was hammered with a sinus infection and the begining of an ear infection. She was taking Cefzil for a week and it wasn't cutting it. Then, we switched to Augmentin and it started helping immediately. I think the WBC was elevated because her system was trying to fight off the infection. We'll get counts in another month.

Paul was in the hospital or three nights a couple weeks ago taking IV antibiotics for a staff infection involving his ear. Thank God it didn't go into the mastoid bone. Our Southeast MO hospital really took good care of him.

I hope that you all had good Thanksgiving. We did. We went to Ste. Gen. to Paul's mom's in the AM and back to Cape at my mom's. We are all counting our blessings thinking of how far we've come in the past year. Our neice, Sarah, Laura's oldest daughter, is graduating with a Chemical Engineering degree in a couple weeks. We are so proud of her and know that Laura would be bursting her buttons with pride.

Tricia gave over a foot of her hair to Locks of Love. She has such a big heart. We are very proud. Jackie has a darling little bobb hair cut, too.
Both girls are going to be in the Christmas parade today!!

We were so thankful when we found out that one of our caringbridge family friends, are expecting a baby. We are so thankful for this blessing for them. I know their angel son has connections and is shining down on them.

Thanks for your prayers and caring, Love, Dede

Wednesday, November 5, 2003 3:47 PM CST

Hi:

We thankfully had strong counts. It was our first time since being off treatment 8 weeks ago. Here it is: WBC 6.9 HCT 41; PLT 218; Segs 62Mono's 3; Lymphs 32. ANC 4278. Jackie is getting stonger. She walked around a 110 track with her PT holding onto her belt loop! She can ride tricycle and loves swinging on the monkey bars. She got a new hair-do, too, a bob. Nana took her to see Miss Lori. Jackie was excited and was such a big girl. She loves her hair and swings it back and forth in front of the mirror. She was appropriately Cinderella for Halloween!! We are counting our blessings. My dad is doing well also. He's doing exercises to get his voice in shape. He's getting his strength back. He's actually been surveying, fishing in addition to providing top notch entertainment for Jackie!! Life is happening fast and so much has happened. We appreciate every second of it.

As we approach the holiday season, my mind goes to our friends and family who have lost loved ones in the last year. I just want you all to know that I will never be able to take Jackie's good health for granted. Holidays augment what is happening in your life. If it's good, the holidays make it better. If it's not so good, the holidays can be the most depressing time in a person's life. Nothing could ever make up for the precious ones we've lost. But I hope that some joy can enter into your life, and help you through this time. I care a lot. And I hope that you can feel that, and know that we will be in daily prayer for you to get through this period of time. I wish we could all get together and have a holiday party to honor our loved ones lost, and our loved left here to continue on.

Some of you may not understand why I put that paragraph in. Why not just appreciate what I have and move forward. I do appreciate it and we are moving forward. I appreciate every little smile, laugh, snuggle or call in the middle of the night. But I will NEVER forget. Along the way, we have formed many frienships with families dealing with childhood cancer. Some have LOST their precious children...,yes,LOST them- beyond comprehension), some are currently in treatment and some are finished with traetment and getting on with life. I will never leave the memories of these courageous kids and their familes behind. We have our child today because of those who have traveled this road before us.

We love you!
Dede

Tuesday, October 7, 2003 5:38 PM CDT

Hi!

We are doing well. Thank God. Jackie is off the Bactrim now. We'll get our first counts in four more weeks. She has had the sniffles/allergy/sinus on and off in the past couple weeks, but she thankfully got better without antibiotics. There'd been some bruising and she looked kind of pale for a couple days, but she looks better now. I am hoping and thinking that it is her immune system fighting off whatever it was that she was catching. So we're going on faith. Nana took Jackie to get her FLU shot today. Jackie wasn't too happy about it from what Nana told me. But we explained that that shot would keep her from getting REALLY sick. Anyway...we're done with that.

We found out this weekend that we'll be doing a Make a Wish. Jackie wants to go to Disney World "Playhouse Disney in Orlando Florida" as she says it. Jackie Tricia, Paul and Nana and Papa will be going. In addition to being off chemo, it's really giving Jackie something to get super excited about!! She's well enough to enjoy the trip, also.

Other than that. Things are nearing normal. We're thankful and not taking it for granted.

Again, as I am making this entry, I can't do it without my heart hurting for all our soldiers, young and old, who have fought the fight and didn't get to celebrate with Mickey. Let's NEVER forget how awful cancer is and continue to fight for the cure so we won't have this beast anymore.

Thanks for your prayers and caring to check in. Love Dede

Thursday, September 18, 2003 3:55 PM CDT

NEW PICTURES ATTACHED. We don't have a scanner!!

Well, we're two weeks off chemo. Thank God.

We did Light the Night last Friday. Thank You all so much for all your kindness and donations to further the research of leukemia/Lymphoma. We raised $1600. WOW!!!I am so thankful that others have done this before we even knew it existed because we have them to thank for Jackie's chemo protocol. So we are giving unto others. My sisters, Eileen and Missy, Ryan, Kyle, Shannon, Kate, Megan, Laura's Sarah and Moose and Paul Tricia Jackie and I walked in Forest Park with our Jackie holding a white balloon. We all had red ones. THANK YOU SO MUCH TO THIS GROUP FOR ALL THE TIME AND ENERGY YOU PUT IN TO GET DONATIONS AND MAKE THIS HAPPEN. And thanks to Eileen for organizing us. I thought it was great that our young adults like Sarah and Moose and Kate and teen agers Tricia and Megan made it a priority to do this. You guys are the best. I love you so much. Ok, I'm getting carried away. But this means so much to me.

Nana was so thrilled for Jackie to be starting her new life that she tricked me and bought Jackie a whole new Fall wardrobe down to the cute shoes and ribbons and bows!! Nana reminds me of Mary Poppins, if you know what I mean.... Practically perfect in everyway!!! As a matter of fact, dad kinda reminds me of Burt!!!!!I'm cracking myself up as I'm writing this!!! I think I've touched on something good here!

Nana was with Jackie's class when they went to the apple orchard, yesterday. Nana said Jackie was adorable, as usual. She even thanked the hay ride driver for the ride. So adorable. Paul walked with Jackie in the Fair parade... while Jackie was riding a horsey!!! She was so cute smiling and waving to everyone.

Jennifer and Zachariah asked us to to to Toucan Jam with them last Saturday AM. She LOVES THEM. She talks about denifuh and Thachariah all the time. They sat next to each other like such little buddies and gave each other the cutest little hug when it was time to go home. We will definately play again!

Gramma Roth is coming down on Monday to take care of Jackie. Jackie said gramma and I are gonna have a Tea Party with my girls!!! Gramma's specialty!!! Thanks in advance!!

On chemo there is no way we could possibly keep Jackie so busy with all these activities. She's getting stronger. Thank God. I wonder if I will always be in constant evaluation of the brightness of her cheeks and every little detail.

Thanks again for all your prayers and caring. Everytime I write when I think about our caringbridge friends suffering from loss, my heart aches. Our prayers are with you.

Love, Dede

PS I attached new pix!!!!!

Sunday, September 7, 2003 11:36 AM CDT

Hi-

Well, we did it. We’re done with 2 ½ years of POG#9905 chemo. Jackie has no recollection of life before chemo. She’s beginning a brand new life! We are so thankful.

Jackie never got accustomed to those procedures. Having her port accessed was always traumatic for her. Her bone marrow aspiration and spinal tap were thankfully normal. Her ANC was 1830. The best thing about it is that it’s done, and we have HER. God give us strength to look past the fear, move forward, and live our lives.

My dad has been doing well recovering from his surgery, also. We’ve been amazed at how much less complicated his recovery is from laser surgery, than it would have been with the traditional surgery Traditional surgery would have required a tracheostomy and a feeding tube for several months. He’s got a 6 week recovery. Right now he’s on vocal rest for a week which is difficult for my personality plus dad. Mom fixed some great beef stew for him the other day. And… he was even sited taking out the garbage! Thank God for getting back into the routine. Jackie was thrilled to see his smiling face coming to greet her at the car.

Jackie is ready to put this whole ordeal behind her. She doesn’t even like to talk about it. She just wants to go to school and play and enjoy life just like any other kid. I can’t blame her for that. We have to respect her feelings and help her to discover her new life!

I really don’t think we could have made it though this without loyal family and friends. My mom takes care of Jackie while I am at work. They have such a special relationship. In the months I was immobilized by the shock and grief of Jackie’s Leukemia (ALL) diagnosis, I have my mom and sister to thank for instilling a happy heart in Jackie. That happy heart has had so much to do with her healing. Jackie has a wonderful self concept thanks to all the good times. She has grown and thrived, too, in spite of all the chemo going into her since she was dx. She weighed 23 lbs when she was dx, now she weighs 41 lbs. She looks great, as you can see. If you know the Celine Dion song “Because You Loved Me”, you’ll know my mom. My dad and my sisters, Missy and Eileen, and my brother from a distance have all added joy to Jackie’s life during her 2 ½ year recovery. Not to mention all the prayers, moral support and dinners from friends and family near and far.

As I write this my heart aches thinking about the families who have lost loved ones to this horrible monster. We are doing Light The Night walk for Leukemia/Lymphoma in St. Louis, this weekend, in the hope to advance research to make cancer extinct. Please say an extra prayer for the families of these precious children who have lost their battle with cancer; Delaney, Kaitlyn, Shawn, Alexandria, and Colby and Aunt Laura. And I know there are many more. One is too many.

Thanks for all your notes to Jackie, prayers and caring. We will continue Bactrim for a month and have monthly blood tests for the next 5 years.

Thanks again, Love, Dede

Sunday, September 7, 2003 12:18 AM CDT

HI!

I just wote a huge entry and lost it. Jackie has finished treatment. My dad's surgery went well, also. We are thankful. I will write more later. I'm still trying to find the entry I lost. Thanks for your prayers and caring. Love, Dede

Monday, August 25, 2003 3:48 PM CDT

Hi;

Jackie is doing well. Her counts were 1334. We're thankful. 12 days of chemo left. We will be finished 9/5/03 I can't say that it's gone fast, but I can say that we will be so glad to not have to give her all the toxic meds that are saving her life. She will feel so much better and get strong. It will be such a relief. So, can I say it's over?? No. When will it be over? Never. We'll just have to coexist with it and celebrate our lives. I don't want to spend one precious moment living in fear.

I've been postponing updating the website because I hate what I am about to type. My dad's vocal cord cancer came back. He's having surgery on 9/3, a week from Wednesday. He's going to have laser surgery with hopefully an uncomplicated 6 week recovery. Thank God his ENT in St. Louis did his research to keep my dad from having to have the traditional surgery which requires an unbearable trach and G tube for several months. I can't say much more on this. We can't stand the thought of him having to deal with this at all. We hate cancer.

Lots going on. Thanks for caring. I hope everyone's school year is off to a good start. Gramma Roth came down to take care of Jackie last Friday. Jackie said "Gramma took good care of me!!" "We played and played!" "Gramma starts with a "g"" Jackie was a lucky girl.

Sorry it took me so long to update.

Please pray for all our loved ones young and old dealing with this bad stuff. Love, Dede

Friday, August 1, 2003 10:36 AM CDT

Hi;

We've been blessed with strong counts after a cold/allergies, croup and 2 rounds of fluid/double ear infections. I know Grandpa and Laura are speaking to the Big Guy about this. Jackie's ANC was 2,244; WBC 3.3; Hgb 12.7; Segs 66; Bands 2; Monos 6; PLT 222. Before Jackie got croup her ANC was 1534 and for her ANC to get stronger is absolutely a gift from heaven. So much has happened during the month of July. It was a tough month. We are so fortunate to be blessed with wonderful family on both sides. Paul's mom is an incredibly strong lady with unwavering love for his dad. Thank God he's not suffering anymore. He would have loved the mititary honors at his service. That part of his life was very important to him. His ulegy was a synopsis of his life written by Donna and John's Carrie and Renee. It was very special. The picture of Granfpa I will always remember is him at his BBQ grill. I had never had a BBQ pork steak until I met Paul! WOW! We've had a lot of fun over the years. We spent a lot of time with Uncle Keith & Uncle Kevin. Jackie is just crazy about them!!! We also got see all the grandkids, Alex's Eupopean trip pix presentation (thanks Alex)and to have a special visit with Laura's kids, Sarah (and Moose!), Robbie (and Stephanie!) John and Meaghan! Robbie turned 21!!!!! WooHoo!! We managed to get Jackie's 5th birthday celebrated, also. She'd been so sick, I was apprehensive but it worked out. Aunt Mary and Eileen's kids spent a week visiting, also. Jackie could not stop talking about Ryan and Kyle. They were very sweet to her, especially when she was coughing so much she could hardly get a word out. She said Shannon was her little sister!

We had a family filled July. You can't choose your family, but if I could, I would choose these guys! Love, Dede

Thursday, July 17, 2003 8:01 PM CDT

Hi Everyone - Jackie had a great vacation in Florida. She especially liked riding the waves and playing in the sand. We did counts today and her ANC was 1534!!!!! Marcia (her nurse at the Costas Center) said that this is just where it should be. I know that all of your prayers and warm thoughts are with us.......

Daddy and Mommy are having a pretty busy time right now. Jackie's Grandpa Roth is not doing well. He is at the Veteran's Home here in Cape and the family is visiting as much as possible. Some prayers sent in Grandpa's direction will be appreciated.

Jackie is swimming up a storm these days. She is learning to put her head under the water - which she does with glee - and then comes up smiling from ear to ear. She is going to preschool three afternoons a week until July 31. She LOVES SCHOOL!!!! The Fall semester begins in early September.

We will celebrate Jackie's fifth birthday on Sunday, July 20. She has come such a long way in her first five years of life - but we still have some hills to climb and some problems to overcome. Thanks to all of our family and friends for keeping Jackie a part of your busy days. Your prayers are being heard!!!!!

Hugs and kisses to all - Nana

Saturday, July 19, 2003. Just wanted to let everyone know that Paul's father passed away this morning. May his soul rest in peace. Nana

Thursday, July 3, 2003 6:48 PM CDT

Greetings to all friends and family from Nana.

Hope everyone has a pleasant fourth of July holiday. I know that Jackie will. She and her family are now having a well earned vacation in Florida. They arrived mid afternoon today after driving half the night.

Jackie told me yesterday that mommy and daddy were going to wake her up in the night and take her to the beach. She also said "I'm going to ride the waves". Dede called soon after they arrived. Jackie was so excited about going to "Floorda" that she didn't go to sleep in the car until 6:30 this morning.

Jackie's counts have come up since last week!!! I am not good at remembering all the numbers - but the important thing is that her ANC was over 900. She hasn't had too bad a time with the steroids - just a few minor meltdowns since the "procedure" last week.

We are counting the weeks now till Jackie goes off chemo. We are having very dissonant feelings. Happiness because she will no longer have to take the "yucky medicine" - and nervousness because we are taking her safety net away. Stay with us - we need you now more than ever.

Nana

Thursday, June 26, 2003 10:30 AM CDT

Well.... We got back from Jackie's procedure yesterday. She's doing better now than she was this earlier htis morning. Here's her counts: ANC 229; WBC 1.57: Hgb 12; Hct 36; Segs 21% Plt 263. I don't know what is going on and why they even did the procedure in the first place. They actually did the procedure before the counts came back. The Dr. acted like it was no big deal and that she has shown that she can rebound the counts pretty quick. He didn't hold any of the chemo's That means, into her 34 pound body went IT MTX; Vincristine and topped off with 6MP at night. She'd been bruising about a week ago, but it had gotten better. The only explanation for the low counts prior to this additional chemo is that she may have used up her immunities fighting something off. We really try to mentally prepare her and distracy her as much as possible. She really tried hard not to cry as much as she had been, in the past, but it really got the best of her. She is smart enough to know what's coming and dread it bigtime. She had stridor with the anesthesia and she threw her guts up on the way home. I hate this.(Then she felt better and downed a Med sized NcDonald fries) The only thing good about this is that basically it's going to save her life AND it was the last Vincristine and IT MTX in her 2 1/2 year chemo protocol that we're due to finish in September. That toxic stuff has got her liver enzymes up again to 221 elevated but not to where they would stop chemo. A few months ago after Jackie had gotten sick and was off chemo for a week or 2, her liver healed and did she ever feel so much better. We get counts next Tues. so they aren't letting her go unchecked very long. I filled her little self up with Zofran, Zantac, Tylenol and pancakes and sausage at her request. She's feeling lots better on the couch watching Sesame Street. She wants to go go school today, (mainly to wear her new shoes to school!... crack me up) so we're laying low this AM. Her counts are actually too low to enter into the world, but this is steriod week, so her counts will get increasingly stronger as she gets increasingly more demanding, grumpier, hungier, and rounder. This week is definately all about Jackie. She'll get whatever she wants whenever she wants until next Wednesday, that is!

We got to go to Leukemia/Lymphoma picnic a coule weeks ago. We are really blessed with such a nice caring group of people. WE also went to a ball game thanks to them and also Children's hospital. WE mat some families dealing the same situation but at different phases than us. We really apprecitaed it. Jackie loved it. She said "The crowd was going wi-uld!!! Poohose is the best Cardinal I ever saw in my life!!" Sooo cute!!! Tricia missed it b/c she was at lifeguard training. It was a good sacrifice. She's working a lot, making $ really likes the job. Good for you Trishy!! I am so proud of 4'11" you!!!

THanks Mom for being the best. I could not have done yesterday without you!!!Jackie was so darling as we were walking into the rehab Center saying "My other Susan brings me here, too!!" We are so blessed to have 2 Susans!!! (nickname from Sesame street)

No matter what happens there is always someone in a worse situation and that breaks my heart. Please pray for all our kids and families with the struggles that this beast brings on. Love and Prayers, Dede

Friday, June 20, 2003 11:33 AM CDT

We had a great time at the ZOO with Mommy and Daddy, (Tricia was at camp) Aunt Missy, Aunt B, Ryan, Kyle and Shannon!!
(There was a picture that went with this and it's copyrighted and I can't get it to cut and paste. I'll keep trying.

It does not feel right to just start talking about the zoo after my last entry about the loss of precious little Colby to this cancer beast. I guess there's no choice but to celebrate the life we have like Colby celebrated his. So in that spirit we'll continue....
Jackie has so incredibly precious. I am really loving speding all my time with her. (Tricia, too, but she's busy being an employed person this summer!) Jackie is such a hoot. Her imagination is great. Jackie and Tricia and I went shopping at the mall after Jackie's therapies one day this past week. We had a great time eating at Garfields. Jackie ate all her Steak and Fries. She called Tricia and I Hetta and Susan. (Names from Sesame Street and an international storybook we have.)The waiter probably thought we (Hetta and Susan were Jackie's babysitters!) She cracks us up so much! She's always telling riddles, too. "I'm thinking of a girl with blondish hair who wears a red shirt and her name starts with s-h"
SAhe gives such good clues we're always on the same page as her!! She sat down at the table for lunch yesterday and said We're at Mommy's resturant!! Can I have a menu please? Then I happened to have a pizza flyer and gave it to her. She LOVED IT!! When ever I run TRicia somewhere, we always say Thank you for coming with me to take Tricia to work. Jackie says"YOU're WELCOME!!"
Then when we end an activity, she always says thank you so much for reading that story to me Mommy!" She's so cute. We made lasagna together gave some to Nana/Papa. Jacke was so proud. But she had her mind made up that she was NOT gonna eat it. Any other situation and I would have said, OK then when she was hungry later I would have offered it to her and she would make a choice. But uh-uh, Jackie got to go play and got some good Dinty Moore stew later. I am so concerned that she eats, that she's got me jumping though the hoop. oh well. We'll fix it later. Like after we're off chemo. She'd better fasten her seat belt because Mommy will be calling the shots.. no more hoop for me!! I say that, but I really don't know in the world I will ever be objective again after this horrendous ordeal. She's been confronted with so much the extra spoiling doesn't even it out, but it does make her feel like she does have some control over some things.

Jackie is definately getting stronger with her balancing and walking! Her PT wants her to do some walking with/without her walker without her splints, just her Sketchers. She actually has balanced barefoot and walked some in her tennis shoes. Thank You Lord!!! But all this is secondar to our larger issue. Jackie's been doing lots of swimming in Aunt Missy's pool!! Aunt Missy is a great girl, what else can I say. Regardless of pool temp and how she feels after work, she hops right in that pool with Jackie. Jackie just beams!!! We're meeting Nana at Missy's in just a few minutes, too... for more fun!!!

We babysat for one little sweet baby Abby earlier this week. Jackie is still talking about her little hands!

We go in for our IT Mtx and Vincrisine on Wednesday.

Please continue to pray for all our kids amd families who are at battle with this beast.
Love, Dede

Thursday, June 12, 2003 10:48PMCDT

Please pray for Colby and his family. He passed away today. Please take a minute out to write them a note in their guestbook. They can use all the support that anyone can give. It is beyond comprehension. His sweet face and all this suffering. I hate this. www.caringbridge.org/pa/colby

Appreciate your life. Don't take ANYTHING for granted, not even your kid's messy room or the fact that you never have any time for yourself. Take the time to do something nice for someone else. If anyone is reading this, I am sorry if this sounds preachy. It's probably the person who is not reading this that needs to. All you have is what you did today and what you're doing now. Make it worthwhile.

Monday, May 19, 2003 7:25 AM CDT

Hi;

I hope you all are doing well. Jackie is strong and hilarious and we are sooo thankful for that. Our time to get counts would have been last Thursday, but we're not going until 5/29. I can handle it as long as she looks good and acts right. Right now, her lips are pink, she's eating playing and strong. She's tolerating that 6MP and Mtx better than she ever has. I just know it is because her liver is WNL within normal limits. I really think that that is why she's finally responding to this maintenience chemo stage like others kids do. She's had just such a hard time tolerating that toxic stuff. You know, my kids' status is the key to my happiness.

Tricia's got her driver's permit. And so it begins!!! She's really looking forward to school being out and getting to camp. I know she's not the only one who feels that way. Last weekend, we had our moms and various other family members over on Mother's day. We all had a good time. We saw Gramma and Keith and Karen and (Amy, the extra bonus) this Sunday. It was really good to see them. Grandpa is doing OK, too. We've loved the talking to and e-mailing all of Laura's kids. We love you guys so much. I am amazed at how you have been able to manage getting through this semester is HS and college. Your Mom would be so proud. I know she is sending you the strength to do it. We're looking forward to our next visit with you.

You know who else means so much to me??? My work friends. Wow, you talk about an unexpected joy in my life. These people are fabulous. We've been getting our kids together to play periodically. Jackie is so hooked on them. The kids are sweet and the moms are the best. She talks about them by name. Very sweet. Some extra special people in Jackie's life are Jennifer and Zachariah!! Jackie is in love with Jennifer, but Zachariah is the one who wants to kiss Jackie. He says' Jackie can I kiss you? She says "no". Make me laugh!!!

Funny things Jackie has said to Nana.... while blowing bubbles "Bless y'haht.. Ya doing a gweat dob Nana!!" On the potty chair.... "I don wanna do it"... (Why not?) "I'm ti-uhd of it". " I wanna open a pwesent" Evewee body sand up.. weuh gonna dance now." So many more, but my brain can't come up with them. I think I'll add them as we go... She's a hoot....

Our special friend that we dearly love is recovering from surgery. Please say an extra prayer for her. Our special friends' baby is home from the NICU doing great. Please say an extra prayer for Colby and his family. His site is in our guest book.

Be thankful for the family and friends in your life. We sure are. Love, Dede

Friday, May 2, 2003 7:31 AM CDT

Hi;

Wow, we were blessed with great counts for Jackie. WBC 3.9 Hgb. 11.8 Plt. 220 Bands 3 Segs 62 ANC 2535. I could tell by looking her that her counts were right in there. Our Dr. has given us the option to get a count in 4 weeks instead of 2 weeks. For him to say that means so much to us, because he does not go out on a limb and take any chances. I know that we'll be able to tell by looking at her whether or not we should get a count in 2 or 4 weeks.

Jackie's strong count made it a alot easier to stomach the fact that our Expedition's transmission bit the dust. LEASED Expedition due to be turned in in 3-4 months. 37,000 miles 1999..... 1,000 miles past warranty. What luck. We have no choice but to fix it. The company has arranged for a 66iscount due to the circumstance, but the total STILL comes to $850. This makes our heads reel. We can bearly afford the payment, much less to sink that amount of cash... (that we don't have) into a vehicle that will be turned in in a few months for someone else to benefit from. I guess we'll chalk it up and move forward and be thankful that Jackie (someone who is priceless) is getting stronger. That is counts in life. But geez.................

Please, pray for all our kids battling cancer and familes trying to cope with the tough things that go along with that. Please say an extra prayer for my friends' newborn in the NICU right now. We want and need their precious baby to get stonger and for all of them to come home.
Thank you for your prayers for our dear friend. Her news was good.

Also, sorry Pop, I gotta mention you! My dad had shoulder surgery last week to repair a torn rotator cuff) in St. Louis. He's gotten his stitches out and is going to PT and doing really well. We can't take any chances on all these people that we love.

Love and prayers, Dede

Friday, April 18, 2003 6:45 AM CDT

Hi-

We were blessed with great counts and clear ears yesterday. ANC 1400 WBC 2.8; Plt approx 125; Hgb 10.1; Segs 50%. This is the first time in a year that two weeks out of the spinal Mtx and vincristine/steriods that Jackie's counts have not bottomed out. We are soo greatful for this, I can't even put it into words.

I have some extra prayer requests. One is for a dear friend waiting to hear some hopefully good results of a bone scan. Please pray hard for her. And also as the Easter holday approaches, please remember all our families and and friends who have lost precious people in their lives. Holidays are a double edged sword. They kind of augment however a person is feeling. If your life is going good, holidays make you feel better. If you're dealing with sorrow in your life, the holidays can be tough. I hope and pray that everyone can reach out to someone in need and make a difference this weekend.
And say an extra one for our troops, too.

Happy Easter to everyone. Love, Dede

Monday, April 14, 2003 7:26 AM CDT

Hi:

Well, we made it through steriod week. Now I have little girl with XL cheeks, so cute. Too bad she had to get them from steriods.

Last weekend, we were so lucky to have our nephew, Robbie come down from Wisconsin to visit us. When a 20 year old guy will hit the road for 6-7 hours to come and visit you, it just doesn't get any better that that. He drove Gramma and Patrick down for a good visit and smoked chicken. Renee even came over, too. Lot's of brothr/sister families were represented!! We were also very lucky to have my good friend Natalie stay with us while she attended a conference in Cape. Jackie is in LOVE with cousins and Natalie!! She was a happy girl, inspite of all her meds.

This steriod week did not seem to cause quite as much problem for Jackie. I am wondering if it is because her liver is back to normal for the first time since she's been on chemo. Remember, last year, she had toxic liver. THAT was horrible. Now she's tolerating the chemo better, more like how the Dr. says most kids tolerate it. Thanks Nana/Papa and Aunt Missy for all the Jackie hugs during her melt downs. We love you lots.

Over the weekend, one of my friends at work hosted an Easter Egg hunt for the CMS toddlers. It was great fun, for us mommies, too. Jackie got to meet lots of special new friends. AND, she finally got to meet her special friend, Zachariah!!! What sweet kids and great friends. It just about chokes me up when I think about how kind that little group was. I am so thankful that these people are in my life, just by chance too. Remember, I switched buildings to the new 5-6th grade center not knowing who or what was in the offing. Someone's definately looking out for us!!!!

Thank God it's finally SPRING!!!!!! Warm weather and lots of sunshine. We waited a long time for it.

We get counts this Thursday, probably a check up too. Jackie still has fluid in one of her ears, no infection, though.

Please remember all the kids fighting this cancer beast and their familes.
Love, Dede

Friday, April 4, 2003 6:50 PM CST

Jackie did an amazing job today thoughout the marathon procedure day. Bless her precious little heart, she is sleeping right now. Her ANC was 1092. It was a tremendous relief after it was 228, just one week ago. Her ALT, liver enzyme was within normal limits for the first time since she's been on chemo. It was 38. I was shocked, thinking what?? not 138?? She's definately getting stronger and tolerating/metabolizing the chemo better. Then, when I thought about her being off chemo for one week, that may have really helped her rebound.

Are there any kids out there who do not yell and cry the minute they see that procedure room? These people are the nicest, kindest you could ever meet. But, when there's a needle going for her port,it makes NO difference to Jackie Roth. IT was a LONG, LONG day. They were short 2 doctors. We got there at 10:05 to get the blood test before our 11:00 appt. Our procedure began a 12:30. We got home at 4:30.

Who did the entertaining of Jackie??? Nana of course.. Who did the driving?? Nana of course.. There is nothing on this earth I can do to thank my parents and my whole family for the support that we could not make it without. All I can do is pass it on and be the very best mommy I can possibly be to my children and do as much cooking as I can for my parents!! Yesterday, Missy came over to entertain Jackie, and she was soo tired her eyes were half shut!!! But there she was, wisking Jackie off to the grocery store to buy suckers and rainbow fishy crackers!! Eileen, on the other hand is also doing her part. She was planning to come down last weekend but stayed away because she got herself dx with walking pneumonia! And then there's my brother Dennis. (Don't wanna embarass you guys) He's always calling me from Seattle. And I say, I'll call you next, but he always beats me to it!! We LOVE you guys sooo much. This is such a tough road. We simply couldn't do it without you. We couldn't function without your love and support. And you know that's true. We are also blessed with a few other very special people and you know who you are. Thank you for caring. It makes a huge difference.

I feel very fortunate that today turned out the way it did. When I think about the families who were delivered bad news, my heart grieves for them. I hope that they are blessed with a circle of family and friends who help them along to get though the day. And I hope that I can be one of those family or friends. I am still doing my New Year resolution. Thanks again for all your caring and prayers. Love, Dede
(You can tell it's been an emotionally draining day.)

Wednesday, April 2, 2003 7:44 AM CST

Hi;

Jackie's counts this week were thankfully up. ANC 740 WBC3.7 Hgb 11.1 Segs 10 Bands 2 Plt 358. It looks like that bad virus/infection is leaving her precious little self. Jackie has been playing, and talking up a storm since she's gotten better. She's gotten to go back to school and her therapies. She's going swimming this morning, thanks to Nana accompanying her to all her engagements. One of her biggest topics of conversation lately have been her special telephone buddy, Zachariah. She told me a story that included Zachariah decorating Barney's Christmas tree!!!! Zachariah, I think you and Jackie will be having loads of fun together this summer. Your mommy and I will see to it!! She's also been talking about Chemo Angel Tammy and Aunt Patty's special visit from Minnesota!!!! Their visit was actually right before her big sickness.

I just found out that during this stretch of chemo, the chemo weeks are not made up if she's off chemo for virus/infection or low counts. In the other phases, her protocol called for weeks to be made up. This all means that we go up to St. Louis Friday for spinal tap/infusion and Vincristine. And.... it kicks off steriod week....

I really can't complain, because so many people are dealing with situations which are more difficult than ours. Plesae say an extra prayer for Colby dealing with a complicated relapse and his family and also a freshman friend of my daughter who has recently relapsed after almost 5 years. Say an extra prayer for the families whom have lost their precious children to this cancer monster. This is heart breaking.

Appreciate the duldrums of your life. If your kids are complaining about doing their homework, just tell them about the kids who would celebrate their life just to be ABLE to go to school. Seriously, it's a reality check.

We're having some special company this weekend that we are looking forward to visiting with!!!! More on that and the procedure later. Love Dede

Wednesday March 26, 2003 4:40; Monday, March 24, 2003 11:30 AM CST

Jackie is feeling like herself again (much better) and is responding to that antibiotic. Still was running a low grade temp last night. Yesterday she didn't take a nap and appeared in ny mom and dad's living room and announced "I'M BACK!!!!!!!!" Thank God she's back!! We are off chemo for now and get counts next Monday. Hopefully she's have recouped her ANC up from 228 ugh. She's not going ANYWHERE anound people with that ANC. Thanks for the extra prayers. They're working.

Monday 3/24
Jackie is thankfully fever free this morning.
Jackie's little cold turned into the NASTIEST VIRUS she has had since she's been born. It went from a cold to ear infection with 10days of Augmentin only to wind up with the other ear infected and bronchitis. Then 2 days of Cefzil-and she only got worse. Back to the doctor with a huge fever 101.8, double ear infections and borderline bronchitis/pneumonia-She got Rocefin shot and Biaxin and breathing treatments. She then ran a torrid fever going up and down to 102.6 for 3 days. GOOD GRIEF!!!!!!!!!

People are always saying... "I don't know how you do it." And work, too....... Well let me tell you.....When it's like this, I can't do it. The ONLY reason we even we're even getting through this is because I have my mom there tap dancing for Jackie/tracing Jackie's hand on a deposit slip from her purse and holding mine at the same time while I sit there in a stupor. My husband and I took bedside shifts comforting Jackie and administereing medicine and brething treatments through this horrendous ailment. Our brains couldn't even think. Praying hard for this to pass. Thank God for my MOM!!!!!! Thanks MOM!!!!! She's the cushion that gets us through the stuff. She's my strength. We are blessed!!!

We try to make life as normal as possible and often it is normal-like. Jackie has been bogged down by the chemo and dealt with head colds. she even had 3 months of ear infections last year which was extremely worrysome. But never anything in her chest. WOE No more of this. I can't take seeing her struggle so hard. Mom took her in for counts again to see if she's eligible for chemo again. Her counts were thankfully ANC 1620 last Thursday. I will update later. Counts 3/24/03 That **** virus hammered her ANC 288 hgb 7.9 plt105 Please send some extra prayers in her direction for her precious little system to fight this beast off and get better. Thankfully, I think she is hopefully on the mend.

Monday, March 10, 2003 7:42AM CST

Hi;
Good Counts ANC 1500.
We had a super special weekend. Chemo Angel Tammy and "Aunt Patty" flew down from Minnesota to meet and visit with Jackie. Needless to say, Jackie was very inspired by these two ladies. Chemo angel Tammy found Jackie and has been corresponding and encouraging Jackie through her chemo for more than a year. Jackie giggled literally nonstop through the weekend. It was instabond!
Jackie fell in love with Tammy and Patty and vice vera!

I think it is incredible that these amazing women took the chance to come and see Jackie. It is larks like this that just make life so fun! I had never seen Jackie open her mouth so wide to take her Mtx and 6MP as she did glancing at Tammy and Patty! She really wanted to impress them!! And that she did, but she didn't need to take her chemo to impress them. All weekend long, she showed off all the cute little things she can do. She even counted in Spanish for them!

They played lots of silly games. Jackie would say Paaady... Patty would say whaadddy! And that was just more than Jackie could take!! They played peeka boo and Tammy was crawling to hide in funny places and that just cracked Jackie up. Everytime I think about it, it makes me laugh.

When Jackie sat on their laps and talked to them, sometimes she'd put her hands on their cheeks. Tammy encouraged Jackie to eat so her hands could grow as big as Tammy's.(not actually very big, but kinda bigger than Jackie's!) I thought they'd turn into puddles conversing with Jackie!

We feel so lucky to have met Tammy and Patty. To get their own children organized and ready for the weekend, and the to get in their car and drive and drive and drive and hop a plane to meet a little child battling cancer several states away just says it all. I am sitting here trying to think of a word that describes it and I can't. I wanna tell their kids, thank you so much for letting us borrow your Mommies for the weekend. When I told Jackie that Tammy and Patty had to go home to be with their families, Jackie said "And they lived happily ever after". She's a smart little girl. We were all brokenhearted to leave, but I reminded Jackie that we have friends and family that live both near and far and when we can't see them, we can think about all the fun and plan the fun next time. Tammy and Patty siad the same thing. I fell sorry for people who don't grab on to life and live a little. They have really made a huge difference in Jackie's life. One that we'll not forget. We'll pass the kindness on and we'll definately keep in touch! We'll celebrate when Jackie's hands are bigger than both Chemo Angel Tammy's AND her look-alike Aunt Patty's!!!!

Jackie caught my cold and was up last night quite a bit. In the midst of being awake, I actually heard her in her bed 'giggling'. I said Jackie what cha thinking about???? And she said "Tanny and Paaaady!!!" Thanks for adding joy to her life!!! We, the family, will continue the good times as I know that you will be doing the same!!
Thanks a bunch for touching our lives. Like LeaAnne Womack saysWhen you get the choice to sit it out or dance... DANCE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love ya,
Dede

Please continue praying for our kids with cancer and the loved ones we've lost. Thank God for Colby's miracle!!!!!Their site is in the guest book.

Wednesday, February 26, 2003 7:34 AM CST

Hi;

Jackie's counts were strong. ANC was 2,840. We feel very fortunate. We've got one more month to build back up till her spinal tap/infusion and vincristine. We should be finished with chemo around Labor Day weekend. Really looking forward to that.

Jackie is so cute. She's ben telling riddles lately. Here's one she told me. Mommy, I'm thinking of someone who's very sneaky (thneeky) and Dora says Swiper no swiping and he's a fox........... Swiper The Fox. She cracks us up.

National Honor Choir was fabulous. We were so proud of our big girl!! It was a chance of a lifetime! The choir Director was a ultra-talented man. 317 kids from 47 states + Japan! Beautiful music and great fun!!

Thanks for your prayers for our cancer kids and family. Thanks for your notes ,too. Love Dede

Saturday, February 15, 2003 8:24 PM CST

Hi Family and Friends - Since my mommy, daddy, and sister, Tricia, are in New York City this weekend where Tricia is singing in the National Choral Directors Honor Choir, (hooray for her!!!) I thought I would send you all a message --

First - thanks and thanks and thanks to everyone who sends messages to me. Knowing that people care enough to take the time to write helps my family a lot!!!!!!

I rode a tricycle at therapy on Thursday ALL BY MYSELF!!!! boy was I proud.......

I am feeling really good this weekend. I went horseback riding this morning - I rode Windy - and then I went to a birthday party this afternoon. There was a magician and the birthday cake was yummy.

My family will be home Monday night - and I will be really happy to see them. I sure have missed them.

Oh - by the way - I have not been staying at home alone. Since I can't open doors by myself yet, I have been staying at my Nana's house.

I love all of you very much. I know that your thoughts and prayers are helping me get well.

Jackie

Thursday, February 6, 2003 at 01:58 PM (CST)

Today we have been blessed with strong counts for Jackie. WBC 3.19; Hgb 12.4; Plt 257; Segs 46%; ANC 1,467. She looks great and has lots of energy. Fwew... we'll never take it for granted.

I just added this to the entry Paul wrote about Laura. Before we add it to the journal history, I want a little more time to give the whole world a chance to know of this incredibly brave woman, our Laura. Like Paul said, you can know Laura by meeting her children. They are the smarted, most kind hearted, good humored and inside and out most beautiful young people you could ever meet. I feel so fortunate to have them in our lives. Their family and Paul's mom/dad are constantly in our prayers. We love all of you very much. Dede





January 29,2003

Hello--

I want to thank everyone for the prayers for my sister, Laura. Laura lost her battle with cancer last Wednesday. She leaves her husband and four children. Sarah, Robbie, and John are senior, sophomore and freshman in college. Meaghan is s sophomore in high school. Every one of the kids, Bill, Sarah's Rob and my mom were with Laura the last week. Each one helped comfort to Laura though the unbearable pain she endured in any way they could. Every brother and sister went up to be with her. Her special godchild, Mikala made a beautiful picture that she took with her along with Toby.

Everything Laura did was for her kids. She was their scout leader, and worked at home, church and school as they were growing up. She organized evrything thing so that things would go smoothly. Laura worked as an accountant for H&R Block where her colleagues describe her as very bright. She had 100's of clients and was the admired teacher of many. Everyone at work counted on Laura's expertise and generosity to learn and do their jobs.

She had many dear friends who provided tremendous support for her and her family. She told Dianne that she swore that after she got better she planned to devote her life to helping people dealing with cancer.

We had many conversations with her as she fought her battle. Laura had a special feeling for Jackie dealing with cancer, herself. Dianne asked Laura to be Jackie's guardian angel. Laura responded by saying I will. It was one of the last words spoken.

Although she is gone from us, her spirit and legacy will live on in her four children.

I promised her I would be a part and add happiness to her kids lives. Dianne promised to the same. I think we all made that same promise. We will keep the promise.

Laura was 47, I will miss her very much. Paul

Saturday, January 25, 2003 at 02:19 PM (CST)

Jackie is staying with Nana and Papa again this weekend. Her Aunt Laura, who was battling cancer so valiantly, died on Thursday and is now Jackie's official Guardian Angel up in heaven. I know you will all remember Paul's family in their time of sorrow.

I am happy to report that Jackie's ANC was up to 1056 this week. So we have weathered another storm on our journey back to health. We went horseback riding today and, as usual, Jackie loved every minute of it. All the people who work with this program are - in a simple word - WONDERFUL. It is amazing to see all of the caring friends that Jackie and the other children in the program have. It was mighty cold out there today - but all had smiles on their faces - children and adults alike. Each child has one person to lead the horse and two others who walk on either side of the horse and hold onto the rider. They walk for an hour!!!! I am in awe of their dedication. When it is so cold they walk in an indoor arena loaned to them by some other caring friends. The world is full of people who care......

Jackie is now tucked away in her bed having a little snooze. She was still smiling when I put her down.

UPDATE ON Sunday, January 19 - Friday, January 17, 2003 at 07:15AM (CST)

Mom,Dad, and Tricia are in Milwaukee visiting with Paul's sister, Laura. She is in all of our prayers. Jackie has been with Papa and me since Friday. Although her counts are low, she is doing quite well. She is eating and playing and has her incredible smile working all the time. Hopefully, the virus she was probably fighting is gone and the next counts will be up. Stay with us - we know all those prayers and positive thoughts are working!!!!! Thanks to all from Nana.

We had counts yesterday. Jackie’s ANC was 391 down from ANC 1400. We were worried that that might be the case. What added to it was that her Hgb went from 12 to 10. They told me something was causing her bone marrow to stop working. We are all hoping and praying that it’s a virus. She hasn’t been outwardly sick. No fever, just running stuffy nose with some coughing. Tuesday doing her PT she was on the treadmill and my mom said that she got weak and pale and had to get off, come home and eat. She’s been pale but this morning she she’s looking better. Maybe it was a virus and hopefully it’s gone. Our Dr. recommended continuing the chemo in spite of the low count. I have to have some faith in his judgment, he’s very perceptive. This tells us that he feels she will recoup it this week. We get counts this Thursday or sooner if we want them. Jackie is acting like herself, and that is very important in the scheme of things. You know the second we relax and start feeling slightly OK……………We never take anything for granted. We NEED those counts to come back up!!!!

Please remember in your prayers all our kids and adults fighting this cancer beast.

II’M STILL LIVING MY NEW YEAR'S RESOLUTION
Every day I go out of my way to add some joy to someone else’s life.
… hoping my life experience qualifies me to say………….
Until we’re faced with a life threatening situation, so many of us take our lives for granted, complaining about the little annoying things in life. When faced with a catastrophic situation, those little annoying things seem very insignificant. For example, in the past few years, we moved from a brand new home we built in the midst of the country side to a nice ranch in a neighborhood. It hurt a lot. Then my child was diagnosed with cancer and DO YOU THINK I CARE ABOUT THAT HOUSE?????????????????? Look around and thank your lucky stars for all the blessings, so-so or blah things going on in your life. Next time you fell like complaining about what you don’t have or all the running you’re doing for your kids, like to soccer games etc., just thank GOD you’re able! Seriously, it can be snatched from you in a heartbeat and you’ll be lonesome your same ol same ol routine. So bask in the doldrums of your life!!
AND get outside of yourself and reach out to someone!!!!! Lighten someone’s load.
Please pray for our Laura and family. You are constantly on our minds. Please keep praying for Keith’s recovery.
Please remember the Disney’s in your prayers.

Tues Jan 7, 2003 7:30 AM ;Thursday, January 01, 2003 at 05:08 AM (CST)

1/7/03 Update Costas Appt on 1/3/03
Spinal Tap was clear. Thank God. Jackie's counts were thankfully good. ANC 1400. Liver enzymes up to 255 elevated from 138 from upped Mtx no doubt, but not in the toxic range. She also got Vincristine, the chemo that causes temporary neuropathy. They used a different anesthesia, Viseral which was so much easier on her system than Fentenol and Sodium Pentathol. No 02 needed, no breathing difficulty and no vomiting. She bounced back from the anestheia within an hour. She said later, Mommy I'm feeling better from my ope-wation. Break my heart.

She gets so upset and combative when it's time for that dreaded procedure. She knows what's coming. It makes our hearts ache, but we know we don't have a choice. We tell her when it's Mommy's birthday (Sept), no more sleepy medicine and yucky medicine. She's been coming up with comments like "I have to take the yucky medicine till mommy's birthday" at different times when she's playing. I know it has got to be on her mind. She has been feeling generally lousy from the steriods and Vincristine and Methotrexate in her spine. Grumpy and sleepless nights. She has played as much as she possbily can, too. We just give her anything she wants this week. Tough week that we will be glad to get behind us. All in all, compared to three months ago, she's soooo much stronger than she was the week after this treatment. We are thankful that this treatment will offer her a bright future.
Please remember in your prayers all our kids and adults fighting this cancer beast.

NEW YEAR'S RESOLUTION
I haven't been able to get to sleep thinking about the new year and the old years, too. It has been almost 2 years since Jackie was diagnosed with cancer. For the past two years our Jackie has spent EVERY SINGLE DAY fighting for her life and fighting to have quality of life. When she was diagnosed, without treatment our oncologist told us she would have two months to live. This whole deal has been beyond our comprehension. No one is equipt to deal with this with prayer and chemo alone. So many people are in this situation. So... my point... I am hoping my experience qualifies me to put these words down on paper.

Make a New Year's resolution.... If your life is going well or even if it's not, reach out to someone in need. INCONVENIENCE YOURSELF. Believe me this is a very lonely trip which most people don't even have a clue about. I am thankful for every time someone makes a phone call to ask, How's Jackie? How's your whole family? Just to have someone acknowledge that they are aware of how tough the times still are can make a difference. Go visit someone during a hospitalization. Send a kid or adult a card, a balloon, gift or food. Believe me, with all the suffering that is involved in living with cancer, any caring comment or gesture lightens the load. Reaching out to someone may be the toughest thing you've ever done because it's sometimes easier and more pleasant for YOU not to. Just do it. If you don't know what to say. Say that. You might be nervous or it might make you feel like crying, but believe me don't let that be your reason. We've already shed more tears than you could ever cry in one phone call. No one will mind if you're a basket case...What matters is that you cared enough to call. Send a note or e-mail to someone. Put someone on your prayer list at church and don't forget about them. Sign someone's guestbook. Those guestbooks are such keepsakes, and they let people know that you cared enough to inconvenience yourself to write a few caring words to a person. They let people know that there really is someone out there on board with them. Remember, cancer is a VERY LONELY road. If you make a phone call, say "I don't know what to say, I just had to call you".

So, if this is your wake up call, start now. Get off the couch and reach out to someone because you never know what tomorrow will bring. Don't just drive on by. Notice and respond. Cancer is not a selective beast. Don't wait till someone close to you is diagnosed to reach out to someone.

What is my New Year's resolution?????

I want to spend every day of my life adding some joy to someone else's life. And watch me, I will do it.

Friday, December 27, 2002 at 10:27 AM (CST)

Hi;and a very Merry Christmas to you all!!!
We thankfully had great counts even with the chemo increase. ANC 2,272. What a blessing!!! Jackie has her procedure on January 3. She's having a spinal tap/Mtx infusion and Vincristine. That will also kick of the big STREROID week. Ugh pray for us!!!! I'm glad she's entering into the procedure with strong counts. Hopefully that will prevent counts bottoming out to 352 like last time.

Wow our girl is absolutely preciously enjoying the holidays!! She won't waste one minute telling you what the season is all about, either. When someone asks her Jackie, did you have a good Christmas??? She replies "It's Jesus' Birthday!!!!!!" She did of course enjoy many ,many presents from Santa due to Jesus' birthday. So sweet.... We have all spent so many hours enchanging glances about how adorable she is. When she was waiting for counts there were a bunch of fasting patients awaiting an early morning blood count. Jackie perked them all up by pointint to them and asking "How do you spell YOUR name???" And you know what everyone of them grinned and spelled theeir name for her. Her big thing lately is the game I spy. She says
"I suhpie sopin that sahts with a "tuh"" It's Tuwisha!!! She know all her alphabet and knows what sounds they make! She's talking non stop and we love every minute of it.

We took Grandma Roth and went to visit Uncle Keith, Aunt Karen, Daniel, Kristen and Amy in Columbia last Monday and Tuesday. Keith was two weeks out of surgery and is recouping amazingly well. We had a wonderful visit and tried to be helpful and not wear him out too much. They are blessed with a circle of friends who are bringing them them food and taking good care of them. There is also a very special bond between Jackie and Uncle Keith. We were very glad to see him on his journey to recovery with Karen, and Danny, Kristen and Amy cheering him on !!!

Laura will be having some visitors from Mo as soon as the snow lightens up. She is an amazing woman not wanting to dwell on those chemo treatments. She says getting out of the house really makes her feel so much better. I think getting fluids made the last treatment go a little easier for her. Having Sarah home for the holidays in addition to Bill, Robbie, Jon and Meaghan was a great lift for Laura. She is also surrounded by a wonderful family and group of friends. What would we do without friends and family. We love you Laura!!!! We're sending big prayers and good thoughts in your direction.

I have to take a minute and say something about chemo angel Tammy. We think about you everyday and appreciate all the prayers and cute notes and beautiful candy cane centerpeice for Jackie. She is absolutly thrilled by it. You kids are adorable. Thanks for hanging in there with us on this LONG road. You are one in a million!!

And speaking of one in a million, my mom also comes to mind.
As the puppy and donkey of our ballon making oncologist says
"IloveyouIloveyouIloveyouIloveyou" We couldn't do this without you!!!!

Happy Holidays to you all!!! Please remember all our children fighting cancer in your prayers. Love, Dede

Tuesday, December 17, 2002 at 09:53 AM (CST)

Hi;

Jackie’s counts were thankfully good, actually a little too good. ANC 2,200. They want to suppress her immune system. Her WBC was 4.4 and they want it around 2.5. They upped her weekend methotrexate and kept her 6MP the same. She’s had big waves of nausea. As a matter of fact, every morning she feels lousy. Then after giving some Zofran, Zantac and some Kix, she feels better. Laura is trying to ward off the flu while she's doing her chemo. She's been getting some IV fluids and that has helped her feel better. She's an amazing woman through all this, spent 6 hours Christmas shopping at the mall last week. Very impressive Laura!!! Keep eating and drinking. We love you!!!!Keith is home now following his surgery and is thankfully doing well. Recovery is a big job, but they are VERY happy to have him home and are really counting their blessings. Karen made welcome home chicken and dumplins. They had chicken and dumplins he night before surgery, also. The prayers pulled him though that procedure.

Jackie has been going to lots of Christmas parties! She LOVES sitting on Santa’s lap, quite a switch from last year. She’s really been enjoying herself and we’ve been enjoying every word that comes out of her mouth. She is so cute and it means the world to us to have our girls doing so well. A few days ago, while we saying a prayer before dinner, Jackie looked around and said “We are a family” Then we also said, Yes we ARE!!! She says so many adorable things. She uses because and since and so in her sentences!! Tricia went to the Christmas dance with some friends last weekend and had a great time. She looked beautiful!!

I hope you all are making the most of the holidays. Even though nothing is ever quite right, it doesn’t have to be perfect to have some good times. Appreciate who you have. We feel very blessed to have our families. Please say an extra prayer for Gramma. Grampa Roth. We got a Christmas card from Paul’s aunt and uncle saying that they will be saying prayers for us in Bethlehem on Christmas morning. It means so much to us. Thank you SO much.

Thanks for your prayers and caring for our family. You are in ours, too. Love Dede

Saturday, November 30, 2002 at 11:08 AM (CST)

Hi;

I hope you all are having a nice thanksgiving weekend. Thanks so much for your notes in Jackie's guest book. When I read them to her, she gets really happy. Nana put a new picture on the website. So cute!! Thanks a bunch.

On our trip to St. Louis on Wednesday, Jackie's counts were really strong; ANC 3016. Her liver enzymes were 126 that is down from 268 to 215 to 126. Jackie is getting stronger. What a blessing that we don't take for granted.

***********************************************************
SPECIAL PRAYER REQUEST
We're very thankful for our family because this Thanksgiving has been a tough one. Please pray hard for Paul's sister, Laura and brother, Keith who has just been recently diagnosed with cancer also. It is beyond comprehension that all this is happening to our people. We feel so helpless. We feel that one thing we can do is request prayer from our friends on the world wide web. Please send as many prayers in their direction as you possbily can. Please remember, Mom and Dad Roth and all the kids, spouses, Jackie and all our children battling this cancer beast.
************************************************************

Thanks for your caring and prayers;
Love, Dede

Monday, November 18, 2002 at 07:23 AM (CST)

Hi;

We were blessed with good counts this week. WBC 3.5 HGB 12.4 PLT 226 Bands 0; Segs 56; ANC= 1960. We were glad because she's had a runny/ stuffy nose lately. I hope that nose gets better or tomorrow I'll have to take her to the Dr.

Jackie rode Windy, her horse, this weekend and loved every minute of it. She always feels a little under the weather on Saturdays so riding her horsey just makes her feel better. It's really making a big difference with her getting back on her feet, too.

Jackie has taken over saying the prayer before dinner!! The four of us were getting ready to say our prayer before dinner (all that is expected of Jackie is for her to fold her hands!!)Well, instead of just listening, she said, Thank God for Daddy, Thank you for Mommy, and thank you for Tuwisha and thanks you for meat and buwoccoli
and noodo. How sweet. We all just had tears in our eyes. Then Paul and Tricia and I said at the same time... And Thank God for YOU!! How sweet!! Our precious girl has been paying very close attention!! She's growing up so nicely!!

Aunt Missy took Jackie and a friend to McDonalds, then to the park to feed the ducks and play in the tot lot!! Jackie had an absolutely wonderful time. She said it was fanatastic... it was fabulous... it was awesome, Mommy!

Nana has taught Jackie to call our names if she needs us, so now instead of "uhuhuh", She's saying "Nana, I need you", or "Mo----mmmmy" It's actually ngongy for mommy. She also says, "Hey guys, I got a story to tell ya. Once upon a time there was a lion.... the end" laugh laugh ----hahahahahahah. She's really been into playing pretend, too. It's so funny to listen to her making her dollies to talk to each other!! She's a hoot.

Please keep Paul's sister Laura in your prayers. She's starting back on the chemo for a couple more weeks of chemo before the next phase of treatment. Also please remember all our kids fighting cancer.

Have a good week-- Love Dede

Monday, November 04, 2002 at 7:30AM (CST)

Hi:

We were blessed with really good counts for Jackie this week. Her ANC was 2072. That is up from 362 last week. She's feeling good and had a great weekend. She had a great time having a sleep over at Nana/Papa's last Saturday night.

We just found out that Tricia made the National Honor Choir! Forty seven out of approx 1900 students were accepted into the choir. They will be singing at Carnagie Hall in New York City!!!! What a total thrill! We are so excited and so proud of our girl!!! We celebrated by taking her out to eat in St. Louis and to the Fox Theater to watch West Side Story. It was the first time in a long time that we did something of that caliber of fun!! We had a great time.

Jackie was Cinderella for Halloween. But the funny thing about it was that she wanted to be a pirate!! Silly girl!! She really had a good time. We did some trick or treating on a small scale. We also got to see our neice Carrie's 15 month twin boys as Thing 1 and Thing 2. They were just adorable and hillarious. Renee came over too. We had a little prehalloween party.

Over the weekend we visited with Grandma and Grandpa Roth and Kevin and Theresa and their kids in Ste. Gen. It was really good to see them.

Thanks for your prayers for Jackie. Please remember, Paul's sister Laura in your prayers. Please say an extra one for Mom Roth, too.

I hope you all are doing well. Love Dede

Wednesday, October 30, 2002 at 07:30AM (CST)

Hi-

Jackie’s ANC was 362. Taking the healthy baby cells (monos) into consideration, our Dr. decided to continue with the chemo. ANC should be>500 to do chemo. So anyway, we kept Jackie home from school and everything else and she didn’t bottom out this weekend, which made us very thankful. Her steroid/vincristine and interthecal MTX week was miserable. Because she has gained weight, her doses were upped. She was out of sorts for about 10 days, and very weak from the Vincristine- not walking.

This past week has been very tough. We were devastated at the loss of a very special 5th grade young lady and her family, including one sister, two brothers and her parents in an airplane accident. This particular precious little student has been in my life since she was 5 years old. There are no words for this tragedy. It’s a tremendous loss. Please remember them and their family/friends in your prayers.

We’re thankful Jackie went back to school today. She’s feeling good, eating and playing.
Her ALT (liver enzymes) went down, too.

Please keep praying for Paul’s sister, Laura, too. She’s dealing with some pretty intense chemo right now. Love Dede

Saturday, October 12, 2002 at 01:39 PM (CDT)

Hi;

Here's our update. Laura has started chemo in WI, with surgery postponed. She has a positive outlook but she and her family need LOTS of prayers and support to get though this.

Jackie had her every three month procedure spinal tap/ infusion and Vincristine Thursday at Cardinal Glennon in St. Louis. There was a problem with the anesthesia-which scared us a lot. The Dr. had to call the respiratory therapists to give her Vapo-nephren treatment to open her airway. It was horrible. She got sooooo sick. She's feeling better now. That is, as good as a person could feel on a week of steriods. I will be so relieved to have all these procedures and chemos/meds DONE. September 03 is when she's scheduled to finish her protocol, POG#9905.

Her ANC was 1260. Her ALT (liver enzyme count)was up to 268 up from 161, I think. We will need to get it retested in two weeks. That chemo is maxing her liver out. If it goes up any more, we'll need to lay off the chemo and give her tiny liver a rest. <45=normal It's not to the toxic level >900, and we don't want it to get there. I know she'd enjoy a week or two off chemo, but they it would just prolong her finishing date.

Please keep Paul's sister Laura and her family along with Jackie and chemo friends in your prayers. Love, Dede

Friday, October 04, 2002 at 08:07 PM (CDT)

This entry is a prayer request for Paul's sister, Laura and the whole family.

This past week she was diagnosed with colon cancer and is now getting through the weekend to deal with more tests to determine a definitive diagnosis. By the end of next week, they will determine exactly what needs to be dealt with and the course of treatment.

Those of us coexisting with cancer know what a particularly horrendous numbing time that THAT unknown is. Everyone feels so fearful and helpless, not knowing what to say, what not to say or what to think. And Laura, bless her heart, is going to get up tomorrow and teach her class. (with some nice supportive friends to step in if needed) She is making plans to maintain her routine, right down to the holiday cookies. WOW. I guess we should follow her lead. What else can a person do??? Get up and do the day and try to make it resemble life as it was last week, only with a real different pair of glasses on.

Please know that we (and anyone who reads this) are praying HARD for you Laura, Bill, Sarah, Robbie, Jon, Meaghan, Mom, Dad, and all your sisters and brothers, and families and are thinking the good thoughts. We'll do anything to help you though this.
Will update later.

Love ya lots,
Us


P.S. Jackie's counts yesterday were good. We believe in those prayers!!!

Saturday, September 28, 2002 at 10:46 AM (CDT)

Hi;

I guess it's been a while since I have updated. Since I returned to work this fall, By the time We get JacKie to bed, I'm just too tired to sit down at the keyboard. Jackie's counts on 9/19 were good. They were WBC 2.9 Hgb 12.1 Plt.288 ANC 1827. They were lower than the time (2700 approx) before due to increased chemo and a head cold which turned into a sinus infection. Antibiotics made her much bettre (oops-better)I slipped into French for a minute! This Mtx every weekend is STILL making her sluggish. It is getting better, but it has been affecting her walking. We start back with horseback riding this week. I really wanted to wait till the first freeze because we're terrified of West Nile. It's been very cool at night, so we will put Jackie in long sleeves and jeans. I may even bite the bullet and put some insect repellent on her.

Paul and I were blessed with a friend who gave us RAMS tickets!!! WOW!! I hate it that her hubby was sick, but really really appreciated the chance to go to the game!! We were just looking at each other thinking this is SO COOL!!! Like kids in a candy shop!
THANKSTHANKSTHANKSTHANKSTHANKSTHANKSTHANKSTHANKS
I want to thank, Chemo Angels Tammy and Sheryl who walked for Jackie in the Light the Night Leukemia/Lymphoma Society benefit in Minnesota on 9/20. AND MY SISTERS, Bea, Missy,and NEICES Kate, Megan Shannon who walked for Jackie yesterday in the Gateway region Light the Night in St. Louis!!! Wow, I've got tears in my eyes just thinking about all that. You all are so sweet!!!! Thanks for being so supportive and for carrying those white ballons!!! Love ya lots!!!

We are just hearbroken to find out that our friend Scottie relapsed w/ Neuroblastoma. Good grief-It just makes us sick. Please keep all our friends fighting the battle in your prayers.

Also thank you to the tri-deltas for being so supportive in out journey with Jackie. She was featured in their weekly wbsite update for Childhood Cancer month. Here's their website with the article Sarah wrote on Jackie. (It will only be posted till Monday, so click on it fast!!Thanks a bunch Sarah!! tridelta.org click on headlines and Great things Come in Small Packages

Sunday, September 08, 2002 at 03:10 PM (CDT)

Hi;

We were fortunate to have some really good counts this past Thursday. ANC 2760..... It was up from 1400 two weeks ago. To celebrate the stronger counts, our Dr. upped Jackie's chemo by 25%. (a whole 6MP tablet) Oh Yay.. They don't want her ANC (immunities)to exceed 2500. The next day, Jackie's nose promptly started running like a faucet. (inspite of taking Zyrtec) No fever, though. I talked to her Oncologist and he said to give her the chemo unless she has a significant fever. So, we did. I'm trying to determine whether it's just allergies or a cold. She alternates runny/stuffy nose. Nothing would surprise me. She just started school two weeks ago, so I'm sure the "new friend germs" are running rampant. She's not eating very consistently, which makes me crazy. I don't know if it's the drainage or the chemo. I guess we'll find out soon enough.

We met my cousin, Nancy and family from Chicago in Decatur Il. over Labor Day. It was so good to see them, and their darling boys. Our big event was going to a Children's Museum. All the little ones loved it. We did however, get a good snap shot of Tricia and Aimee, helping the little guys climb this big steep thing. Thanks girls!!! You were good sports. Carl was feeling a bit under the weather. (Hope you're on the mend, Carl :)..... Tricia brought a very sweet friend to Decatur with us. It had been 3 years since we saw our Park Ridge, Chicago part of the family. It was nice to see those faces.

We were worried about Jackie traveling while full of chemo, but she fared pretty well. Her counts were strong that following Thursday. This Mtx dose every Friday in addition to her nightly 6MP has been taking a toll on her strength through Monday. We'll probably stick to day trips.

While we were in Decatur, we regretted missing a visit with Paul's family and our friends, Natalie and Jake. It's hard to juggle everything. We've just started kinda living our lives again.

Tricia started HS this week. WOW.... hard to believe. She likes it. It's a brand new school and her class will be the first one to go from freshman to senior. I think everyone was surprised at how big the school is and the # of students. Tricia is in student senate, so that will give her a chance to meet some new kids. High school is so much more academic oriented than when I was in HS. Tricia has already signed up for as many academic classes as she could find. The academic classes are weighted with more grade points than regular classes. I don't remember being concerned about any of that when I was a kid. But I'm glad she's motivated to take high school seriously. Not that it stopped me in pursuing higher education! Ha.. It's just a different world now. We're very proud of Tricia.

Paul and I were invited to talk to the evening optomist club regarding our road traveled with Jackie. What a bunch of REALLY nice people. I think that we will join and try to start some sort of support system for familes dealing with childhood cancer in Cape.

One last funny story...... Last night Jackie said this to me... "Guh-night Sugar!" We spend large amounts of time hanging on every word that comes out of her mouth. It's soooo fun. Have a good week everyone. Thanks again for your prayers and caring. Love, Dede

September is Childhood Cancer Awareness month. If anyone knocks on your door for a donation, please know our kids are an infinately good cause.

Monday, August 26, 2002 at 07:18 PM (CDT)

Hi;

We had counts last Friday. They were in the good category:
WBC 3.3;HGB 13.4; PLT 183; SEGS 44% BANDS 0% ANC 1,452. They were a little down from last time 1700+, but, it was not a 50% decrease like it was recently. Jackie seems to be tolerating the weekly lower dose MTX and 6MP better than she did the past couple weeks. She ate and played. It just doesn't get any better than that!! My sister and cousin Megan came over on Sunday and Jackie, Tricia and I a (Paul was watching the ballgame!)made snowcones in Jackie's new Little Tikes snowcone maker that we got her for her birthday. They were actually pretty good!!! Jackie did more admiring her snowcone than eating it!!

Last Monday we went to a Cardinal ballgame in St. Louis thanks to the Leukemia/Lymphoma Society. It was such a thrill. Something that regular people get to do. We appreciated the tickets very much. A hemoc nurse from Children's Hospital found us in the crowd and gave us a coupon book. Very sweet!! Jackie got a Fred Bird. We all got ice cream. Paul loves taking his girls in Cardinal T-shirts to the ballpark!!! We had a great time. Jackie did a lot of belly laughing at the vendors. She came home saying
BU-light;Bu-light!!!! She had us in stitches!!!

We got Jackie's splints adjusted and she's happily on her feet lots more. It was a special day for Jackie, today. Jackie is back at Nana/Papa's!! They are a VERY happy little unit. Playing and eating Nana's lunches and Papa's stories and little songs. Yes, Papa's having good checkups and has gotten his priceless voice back!!!! Our family is very happy about that!! (to say the least!) She had her first day of preschool at the university. (three afternoons per week.) She loves school and her new little friends. Oh yeah, I went back to work. Had my first day, today. I'll be working at the middle school 5-6 grades doing speech/lang therapy this year. I'm looking forward to the new situation. I sure have run across some really great people in my old job (both students and adults) that I will be missing this year.

Gotta go check on Jackie. Thanks for your paryers and notes to Jackie!! Love Dede

Sunday, August 18, 2002 at 10:33 AM (CDT)

Hi!

I hope you all are doing well. Jackie thankfully had good counts on 8/8/02. Her WBC 3.2; HGB12.8; PLT 253 Segs 52;Bands 6; ANC 1782. Her immunites decreased from 4600 to 1782. That's alot. And the 4600 was PRIOR to steriods, 1782 was after. Steriods typically spike up the counts. This was not the case. But the other variable involved was that we started phase 4 out of 5. Jackie gets 1 dose of MTX (10mg) every Friday on top of the nightly 6MP instead of a mega 4 divided doses 6 hours apart (50 mg) followed by the rescue pill Leukovorin 48 hours after the initial MTX dose and 12 hours after that. Leukovorin is a type of folic acid that nullifies the Methotrexate and its nasty side effects. Now that she's taking a smaller dose, we don't do the Leukovorin so instead of washing the 50mg MTX out after 48 hours, the 10 mg MTX and it's effects stay with her every week. I'm thinking that's what brought her counts down more than 50%. They want her immunites (ANC) to be between 500 and 2500. If her ANC had stayed around 4600, we would have had to up her dose.

We get counts again this Thursday. I am hoping and praying that her counts will be holding. She looks good. She's not wanting to eat her 2 breakfasts now, though. I can barely get some Kix in her, much less bacon/ egg, till about Tuesday after the Friday Mtx. Her lips get pale looking in the AM, but then as the day goes she looks a whole lot better and has a good appetite. We hoping that she'll adjust to her new chemo schedule.

We've been concerned about her walking. We had to get her splints remade for the THIRD time. I just got pair #3 adjusted to be comfortable for her. We're switching Orthotic providers to one from St. Louis we could see in Cape every two weeks. The splints can be really high maintenience.And most of all, Jackie shouldn't have to make that trip to St. Louis because this highly recommended orthotic place can't seem to get it right..... It raises my blood pressure just thinking about it. Jackie sure has been talking up a storm, singing rock a bye baby etc. Soooo cute!!! It's fun. We can't wait to her the next word out of her mouth. We have preschool orientation this Friday. My super sweet mom will take Jackie to school 3 (1/2 days) a week in the afternoon. She's staring to give up her nap, so it will work out great. She's really excited, but we've got to get her on her feet again to keep up with the kids at school. That nasty Vincristine on 7/26 didn't help things, either.

Tricia has just gotten over a horrible virus that had us in a tailspin. They tested her for everything from Mono to our worst fear. I can't even put it in writing. But we were delighted and extremely relieved to see her counts were good and strong. Thankfully all the tests were negative and she started feeling and looking better, took about 10 days. Very strange, dark circles under her eyes, nausea, tummy ache, and no energy, sleeping all the time. Whatever it was, bless her heart she fought it off and she's back to her peppy sweet self. fwew.....

Anyway, that's what has been going on with us. Oh, one more thing. Last night we went to Wine Tasting on the Mississippi, a benefit for Childhood Cancer sponsored by the Evening Optimist Club in Cape. It really warmed our hearts that this organization is making huge donations to Cardinal Glennon Costas Center, our place, St. Louis Children's Hostipal, and helping families fighting this beast. Wow! It was really something special.

Again, thanks for your prayers and notes to Jackie. She loves to sit on my lap and have me read them to her. Very sweet. I'll update again after counts this Thursday. Love, Dede

Thursday, August 01, 2002 at 08:32 AM (CDT)

Hello;

First of all; Please say a prayer for my sister-in-law, Theresa's family. Her brother was killed in a car accident this past weekend. I can't imagine what you all are going through, right now. Her family has already dealt with the loss of an older brother in a similar accident. We're praying hard for you and your mother. I wish we could be there for you.

It's hard to update after that. Jackie's spinal tap/IT MTX and vincristine was last Friday. The procedure went as smoothly as you could expect for a little girl who didn't want to be there. Her ANC was 4600. They will be upping her chemo to supress the immune system more if the ANC stays that high. PL 194; Hgb12.0 ALT 161 elevated from 119 last time. It's elevated (0-50 is normal) but not in the toxic range. Week 72/130. Gotta go, Jackie's on steriods and very liable and hungry. She wanted to play Lucky Duckies but then got angry when I took it out of the box. I'll update more later. Thank you so much for your prayers for everyone.

Thanks also for your caring notes. If I had your e-mails, I'd e-mail you back. Love Dede

Sunday, July 21, 2002 at 11:03 AM (CDT)

HI!!!

Jackie just had her 4th birthday yesterday. I made her a "Dora The Explorer" cake. She LOVED it!! When we picked out plates etc, for her theme, Tricia and I spotted Clifford and Blue's Clues. When we asked her which one she wanted, it was so funny, she said "BOTH!!!" and promptly put them both in the cart. Tricia and I cracked up and said "OK, both it is!!!" She had a PBS cartoon birthday. She adored her party accessories!!! Give her Clifford/ Blue/ Magenta and Periwinkle on a plate and it beats any present anywhere. (except the stuffed alligator from Uncle Scott!!!!) When Uncle Scott and Aunt Missy called to say they wanted to swing by early on Birthday morning because Uncle Scott had special present for her, Jackie started kissing the phone!!!!

We had counts on Thursday. Her ANC was 1461. They were a little lower than the last ones ANC 1700 approx. But we could account for the dip. We got back from FL on Saturday, had counts, began Mtx, Then, on Sunday, Jackie came down with croup. She had THREE nights of it and about a week to get over all the symptoms. I took her to the Dr. and she prescribed 8MG of Decodron. OOOO. I called our Hemoc nurse and she consulted w/Jackie's Onc since Jackie has Decodron on her protocol every three months, 1.4mg is her dose. We all had a bad feeling about the one time only a mega dose, so I didn't give her any. If her throat had closed up, I would have given it to her. As it was we opted for three sleepless nights of cold air humidifier, baths, etc. It was a tough week. No therapy either. Paul was out of town the whole week, too. When we had counts on Thursday, we were relieved her ANC was what it was, not <500.

It is week 71/130 weeks. According to Jackie's protocol roadmap, this is out LAST weekend of divided dose Mtx.( 4 doses, 6 hours apart followed by leukovorin (the rescue) 48 hours after the initial Mtx dose 12 hours apart for 2 doses. We'll give her the last Leukovorin dose tonight at 7:30 pm. YEAHHH!!!!! It will be such a relief that this phase is over. It is Intensive Continuation. Week 72 is a spinal tap/IT (Interthecal--- in the spine) Mtx and Nasty vincristine. THen we will start Continuation which wil include a weekly oral dose of Mtx and continue nightly 6MP, Bactrim 3 days a week, and Spinal tap/IT Mtx and Vincristine. 130 weeks for her will be September 5, 2003.
It will be good to not have to give her all these disguisting meds, but the closer we get to the end of the treatment, the FEAR emerges. I try to click it off. We'll all just have to pray really hard because I'd rather get hit by a truck than see relapse. All our kids dealing with this beast are so precious, everything they have to go through, and they play and enjoy life. It breaks my heart. The bravery, faith and drive to get up and live their lives sets such an example for the rest of us.

As we see Jackie growing up, she's such a cool kid, tough as nails and soft as moosh at the same time. She's a hoot, with a photographic memory, starting to talk in 4 word sentences. Please pray for all our kids and for the rest of us to have the faith and stength to provide for them. Thanks ALOT for your entries in the guest book. It absolutely makes our day when someone signs the book. Jackie gets such a kick out it it. It helps to know so many people are helping us get through this. Hope you all are having a great summer. Love Dede

Sunday, July 07, 2002 at 10:12 AM (CDT)

HI!!

We returned from a week on the beach in Destin,FL., got counts and were so relieved to see Jackie's counts had actually improved. Her ANC was 2416, up from 1400 2 weeks ago. Platlets just about doubled to approx 357 WOW!! The beach had a healing effect on Jackie!! I was worried the diffent routine would take a toll, but thankfully it didn't!!! We made sure we gave her down time and brought lots of Dinty Moore stew/ fuit cocktail, her favorites!!!The beach was beautiful!!! We just about had to pry Jackie away from the beach. She loved the waves sand and sun!!! She wanted us to let her go. We hung onto her "boyant bathing suit" straps. She has one of those suits with removable built in floaties. She loved riding the waves. I was going to be thrilled just going to any beach (it had been 6 years), but I felt like we went to the Caribean. The water in Destin was turquoise with white sand. It was the most beautiful water we have ever seen--- and without even leaving the states! We were all just in awe of the beauty of that place. We brought cousin Megan (Missy/Scott's younger daughter)with us. We were a great little group!! Laughed constantly. Megan got this beautiful golden tan and Tricia looked like something out of the jungle book. We just kept Jackie covered up with 50 sunscreen, a hat and a long sleeved shirt. We have to be really careful with sun/chemo. None of us got sunburned. We made sure of that. We want to make it an annual event. Six years ago darling little cousin Alex at age 7 (Kevin/Theresa's oldest daughter)came with us. Alex, there were no seashells on THIS beach!!! There were kids finding sand dollars in the water though, we didn't find any. We went on a sunset cruise on the 4thof July and saw an incredible fireworks display and had a really fun boat ride in the Gulf.

We really felt like we were people again living our lives. It was great. I will post some pix as soon as we get our act together. Jackie is talking up a storm. She absolutely fell in love with Megan. We she woke up in the AM, she would say. "I want Megan please". What a hoot and a great new livein buddy to play with. Tricia and Megan played lots of Clifford colorforms with Jackie in the room. Paul and I were greatful. I am very lucky my husband is such an incredible make it happen kind of guy. He was the brilliant mastermind of this vacation. Thanks PJ!!! He ran his legs off, too. We all heart him lots!!! Please keep praying that Jackie's counts stay good. Let us know how your summers are going. I hope everyone in having some fun. Love Dede

Friday, June 21, 2002 at 09:55 AM (CDT)

Finally!!!!! Ears are clear!!!!!!It's been since February. I can breathe again!!!! Jackie's ANC is 1400 WBC 3.5; HGB 12.3; PLT 171; Segs 40%. It looks like we're in the race again. Zyrtec and disgusting Ceftin worked for Jackie. We are so thankful!!!!

Jackie has been imitating/saying 4 word sentences!!!! What a doll!!! She's getting stronger with walking and swimming also!!!! Thanks to YaYa and Mihee (Nana and Missy)

We're doing Mtx this weekend. Say a little prayer for Lammy!! Love Dede

Sunday, June 09, 2002 at 03:36 PM (CDT)

Hi;

We were thankful Jackie's ANC was amazingly up from 510 to 940. So, we've been on for MTX this weekend. Though, that fluid in her (L) ear DID get infected, darn it. Four X's in a row, now. She's taking Ceptin (extremely nasty) and Zyrtec. Hopefully this combo will get rid of the infection and dry up the fluid once and for all. Pray hard for that for Jackie, OK??? If she wasn't battling the ALL, the Dr. would recommend PE tubes for her. Her ANC needs to come up so she could have something to ward off the infection. Our Onc. is also very leary of Jackie and anestheia/procedures. She has had a hard time w/ her breathing with anesthesia. He only does what is absolutely necessary.
Jackie's talking and walking more and more by the day. She's so proud of herself. We're so proud of her.

My dad has actually been land surveying!!!! He's also been gardening and painting the new addition to their home, his massive shop!!!!! My mom is so proud of him. He even babysat for Jackie while my mom taxied me up to St. Louis for my one week check up. Bless their hearts!!! I feel great, fast recovery. We even went to Target as a family yesterday. Everyone but Tricia. She is happily at camp this week, loving every minute of it. We'll be glad to see her on Fri.

One more note.... my typo's, sentence fragments, etc. I know sometimes I read what I have written and think... grade school dropout.... Please know I have a master's degree, got a 3.9. When I write, I'm ALWAYS weary, in a hurry for Jackie and paranoid if I hit the back button for editing my entry will disappear, (It happens alot, and it really gets me down when that entry disappears). Therefore I often just hit the enter button w/o proofing, running the risk of my written word making me sound like an idiot! But really no excuse!!!!!! Thanks for your caring and prayers, Dede

Wednesday, June 05, 2002 at 05:55 PM (CDT)

Hi;
The past few weeks have been crazy. The thursday before memorial day weekend, Jackie's ANC was 510 with another (L)ear ear infection. Our Onc. said go ahead with the Mtx. Memorial day weekend Paul and I had planned to fly to Detroit (Oasso)for a dear friend's wedding. We were very hesitant to leave and my mom said GO!!! Have fun!!!! So having the faith in my mom that we do, we went away for Fri./Sat night. We had a great time. We got back in time for my neice Kate's (Missy and Scott's)HS graduation and birthday party. That was very special. My brother was doing some "away" training in Wisconsin for his new job and drove 6 hours to come to Kate's graduation. They live in Seattle so it was realtively closer than driving to/from Seattle. We all had a great visit. Jackie did well with her Mtx/ Augmentin. Then Tues/Weds. were moving days at work. I'm moving to a different building after 13 years. Thanks to the sixth grade boys and a big truck we all got moved. I'll miss some very special friends but am looking forward to working w/5-6 graders. I have k-6 now (Speech/language pathologist). Then, Wednedsay night TRicia/Jackie had a bunking party at Nana/Papa's and Paul and I set out in the wee hours of the night for my very own HYSTERECTOMY. We had to be at the hospital at 5:30AM Thurs. morning so we had to leave at 3:30. We got there, I had it done, we left. WOHW!!! I didn't quite know what to expect. Paul and I thought it might be a time for us to yack and catch up a little. WRONG. I said about 5 words in a 24 hour period, then after 29 hours left to come home. Laser/laprscopy. Compared to what our kids are all going though it's like a scrape on the knee. Meanwhile Jackie's nose starts running like a faucet, and I'm worried sick. Then this nice angel straight from heaven namely, my mother, came over and took Jackie to the Dr. and to therapy. She had FLUID on the (L) ear again. Not infected. She had jest finished meds from her 4th ear infection. Zyrtec has completetly transformed her poor little runny nose into a perfectly usable braething part. We get counts and ear check up tomorrow. I'll update then. Speaking of really sweet people in our family, Paul's mom, dad and sister, Donna came for a fast visit and gramma brought her ultimate chicken noodle soup for us and Donna brought great liver dumplings. All Paul's bro/sis's pulses have probably increased just thinking about this and possibly even having a few jealously pangs. :):):) Thanks Mom Roth and Donna. It's especially thoughtful of you because we know life has been difficult with Grandpa's health. We love you very much. We've also been living on some very delicious baked pasta from Missy. THanks Missy, too. I'll update tomorrow. Please pray for all of friends dealing with the bad beast cancer.

Sunday, May 19, 2002 at 09:34 AM (CDT)

Hi;

Jackie has thankfully recouped from the Vincristine/Mtx and ITMtx. She tolerates her 6MP decently.. She's doing her big girl walking again. She's really good at speech imitation and starting to put 3-4 words together, too. (I want a....) She's so adorable... it's fun.... You should see her perform for Nana, too. Jackie always puts that extra surge of effort in everything for her most beloved Nana. She rode horsey Clyde with Daddy and Aunt Missy walking with her. She loved every minute of it.
We're soooo thankful that we've had a wonderful week. My dad got a clean bill of health from his onclogist and is in his third week of recovery from disk surgery. His garden getting green and really growing. Jackie's tomato plant at Nana/Papa has them all beat, though....It's huge with blossoms, too!! Tricia looked BEAUTIFUL for the farewell freshman dance, this past Friday. We parents of the kids got together and made dinner (kabobs) for them so they wouldn't have to brave the real restuarant world. It was a very special occasion. Everyone had a great time. (Jackie enjoyed herself at Nana/Papa's, one of the siblings had gotten sick earlier and we couldn't take ANY chances....) Thanks again for your prayers, we feel them. Love Dede

Sunday, May 12, 2002 at 11:02 AM (CDT)

Hi and Happy Mother's Day to everyone!

Jackie is finally feeling better. Her counts WBC4.0 Hgb 10.7; Plt 320; ANC 1600 THank God! Thatis the silverlining to those nasty steriods. Our hearts were just aching for her when she was feeling the effects of the steriod, the Vincristine, IT Mtx (in spine), oral MTX and 6MP. This morning we did the Leukovorin, the MTX rescue, and she has been playing, laughing and enjoying herself. Unlike this past week and esopecially the weekend with the additional MTX. Sometimes she just cried and cried. Thursday night she cried for an hour and a half. Zofran helped her some, but she also had a tummy ache from her HUGE appetite this past week. We have felt so helpless, giving her ANYTHING she asks for. I was doing some late night story telling which she dearly loves and then when I said they lived happily ever after, Jackie gave me a little shove and said "Out". I said, Jackie, that's not very nice... looking for an apology I said "Now what do you say to Mommy? She looked at me and said "In". Those steriods..... Nana managed to keep Lammy content with lots of love, glitter and playdough and lots of bacon, string cheese and french fries, in addition to regular meals. Mom's got Jackie saying "I wa wing" (I want swing.) Jackie has a swinging date with Daddy after supper everynight. She says it to him, too. So sweet. Nana's also got Jackie telling her what letter comes after "A" "B" C, etc. She knows them all. She really digs Nana and the alphabet, too. Let me take a minute out to say my mom is my hero. We would not be sane without her. I could never duplicate what she bring to my kids lives. We are so fortunate. We want to take good care of her so we don't use her up.

This weekend was our neice from Columbia, Kristen's, graduation. We were planning on going and taking Grandma and Grandpa Roth, but our MTX. weekend got thrown off when our chemo was delayed. Paul's brother, Kevin and his family came to Ste. Gen for a visit and they all went to Kristen's graduation. Happy Graduation Kristen!!!!! We love you!!!! All your work paid off!! Now, it's off to college!!!!! You mom should get an award, too, for being such a gifted mother and teacher!!! We sure are SORRY we were not able to make the trip on your special day. Never stop celebrating your life!!!

My dad is doing much better, now too. It's been almost three weeks since his disk surgery and his pain is on it's way out. He and my mom actually went out to eat last night. (like regular people) They said it felt GREAT!!!!!!

Thank you for caring. We are on week 60 of 130 weeks of chemo, please keep praying. THanks for you notes, too we love them. Jackie can almost read them herself!!!Happy Mother's Day, Love Dede

Saturday, May 04, 2002 at 03:14 PM (CDT)

Hi;

We're counting our blessings. WBC 2.35
Hgb 9.7; Segs 38%; Pl 260; ANC 893. Clear spinal tap. Counts are improving(and that is WITH Mtx and 6mp) Liver enzymes (ALT) 119; it was lower this time. Last time it was in the mid 200's. (Normal is 0-50 Toxic is >600.) We have been there before so liver damage is always in the back of my mind.

Jackie did not have any breathing problems with the anesthesia and she was quick to wake up this time, too. BUT, while she was asleep, it took 5 STICKS, to do the spinal tap. I just about blew a gasket. We all stood there staring with our mouths open wondering what the deal was. Apparently, our little sugar is bigger than she looks and will require more needle next time. I thought the one the Dr. was using was already huge. Thank God for sodium pentathol, Jackie has no recollection. They should have put some in our arms, too. Tough day. Jackie got Vincristine, too. She seems to be faring ok as far as her facial muscles aren't affected at this point. She has been weaker for 1 to 3 weeks when we have previously had this chemo, but she has recouped before and I have faith that she will this time, too. My sister, Missy made the trip with us (for entertainment),and Paul met us there.

It's like a whole other world when you walk in the Costas Center. Everyone is so glad to see you, and so glad it's been so long since they have. It is there that we have met some of the most special people that I have ever known including patients, nurses, drs, and staff. It's a group of people who have their priorities straight. I met the nicest smiling college guy who was thankful to have the energy to enjoy a cardinal ballgame. He told me it was his second relapse with ALL, coexisting with some nasty treatment. Yet all he wanted to do is just have some quality of life. When he went to get some tea, he offered to get the beloved Costas secretary some, too. Very sweet. We had a good conversation, a little bit about the cancer and a lot about everyday life. It's so weird to coexist with cancer. You wake up,look around, think thank God I'm OK today, get up and enjoy the routine of the day. Some days it takes longer than others to think that. Please pray for my friend.

My dad is a week past his disk surgery. He had his Post/op exam the same day as Jackie's spinal. Mom has been a very busy girl. They were impressed with the neurosurgeon. He was very meticulous. His staples looked like a zipper. Dad is definately on the mend. We're very thankful for that. He got to drive for the first time this morning. He said it felt great.

Dad has had to take lots of nausiating meds, one of which was STERIODS...... enough said. No sooner did dad get off steriods then Jackie started her weeks worth. They really help so many things but, oh those side effects....My poor mom.....ha really we just go with the flow.... meaning cater to the steriody person. They say jump. We say how high?

My sister is such a sweetie, she has planted his garden with him being the garden manager, so when he feeling better, he will have a lush garden to enjoy. (If you know my dad, he has a jungle green garden every year. He starts his tomato plats as seeds in his basement. Of course he has many different types andthey are all the best of the best.) Missy planted a grape tomato plant with Jackie for Jackie. Jackie was digging around in the dirt with them, and Missy found a WORM. Jackie dove right in. She said "WUHM"!!!! and signed more"Wuhm" What a labor of love for my nonworm oriented sister!! Jackie has talked about the WUHM eveyday. We've even painted a WUHM, too. She's a hoot.

That's it for now. Please say extra prayers for all our friends fighting the bad beast. Thanks for caring. Love Dede

Thursday, April 25, 2002 at 01:50 PM (CDT)

Hi:

A quick good news update on Jackie and dad...... Jackies ANC was 750 up from 200. She is feeling much better taking her antibiotics. She's also trying to fight off a swollen toe from nail irritation. WBc 2.0 HGB 9.6; PL 300; Segs 29% She is eligible for chemo.... barely (needs ANC>500). We'll decrease 6MP to 3/4 again and do MTX this weekend. Please PRAY hard that this chemo does not wipe her out. Next week, we'll have Vincristine and spinal tap ugh..... She needs to be strong for this.

My dad's ruptured disk surgery is OVER went well!!!!! The Dr. said that nerve was really really pinched by the displaced disk. But,thank God, he fixed it. Pop is home and starting to make his way around the house. The nurses just loved him. He was a hoot. Kept everyone in stiches at the hospital. He's taking pain meds and should be getting better by the day..Dede I

Saturday, April 20, 2002 at 07:34 PM (CDT)

Hi;
We have Tonsillitis/ear infection......
I'm sitting at the computer debating... Freecell or update the website. It takes less thought to play free cell, but having faith that some people do care, I will write. Two weeks ago,we had ANC 1000, and a recurred ear infection. 10 days of Augmentin- Jackie was better. Last Thursday after my wonderful mom ran Jackie all over creation for therapy and counts, I was surprised to find out her ANC was 200. No 6mp this and no Mtx this weekend. She was so lethargic yesterday, (Fri) but her ears had just gotten a skeaky cleaan bill of health on Thurs. i called and called and called the Costas Center thinking it was her liver since we'd increased 6MP. They felt is was a virus of some sort. Very weird, she was just fine the day before. Well, last night after a day of unusual napping, she cried and cried all night touching her (L) ear and her throat. we almost took her to the ER then, but I kept thinking may it was just negative middle ear pressure w/allergies, since hers ears had been perfect on thursday. we decided, she neede to be seen on Sat. Our Ped.'s assoc. was on call and had doiagnosed the original ear infect. He met us in a clinic above the ER and dx Jackie w/ tonsililtis and a (L) ear infection. He said it wasn/t too bad. IT SCARES US!!!!! She is feeling better and is on Augmentin now. I hate this- ??????????????????????????

My dad has a ruptured disk. He's having surgery this Tues. An unexpected, unwanted event. He has been coping with this for the last 2 weeks. I hope and pray he'll be back on his feet sonner than soon. It's so weird. He's 77 and never has had anything wrong with him. He just wants to get back into the routine of working (land surveying)every now and then because it's in his blood, gardening and playing etc and doing whatever.... Life starts again on Tues. after surgery. Please pray for Pop and Jackie.

Friday, March 22, 2002 at 08:47 AM (CST)

Hi;

Everything is thankfully going well. My dad had a great checkup with his St. Louis ENT. The Dr. was able to use the scope to get a close look at the vocal cords. He said "it" was GONE. The cords looked sunburned from the radiation, but are getting better. It's only been a week since his last treatment. His voice is barely audible, but is supposed to get stronger as time goes by. He has monthly appts. with his ENT now. It looks like they will have a lifelong relationship with the Dr. checking him out regularily, less often as time goes on. He also gets checked out by his Radiation Oncologist in a couple weeks, then he'll be followed every six months by him, also. It's a good insurance policy to make sure that guy is OK. This was sure a ride that my parents and the rest of us weren't prepared for.... on top of all of Jackie's stuff.. crazy.. My good mom can finally get some rest. She's like the family glue, keeping things together.

Jackie's counts were "great" as her nurse put it. We will never take those counts for granted. Since her 6MP nightly chemo was upped, we were apprehensive about how her counts and liver status would be. Her ANC was 2200+, HGB 13.3. The white count went down and the red count increased. They wanted to supress the immune system more and the meds increase did the trick, but didn't wipe her out. Jackie looks really good, THANK GOD!!!! She's been a lttle nausiated at times when she gets up in the morning. (She sure shouldn't have to put up with THAT) Sometimes I just go ahead and give her Zofran, but sometimes she feels better on her own. She definately lets us know what she needs. If we can keep her tummy full, she does much better. The three of us are pretty good meal fixers here, but Nana is the pro feeder. When none of us can get Jackie to eat, Nana can sweet talk a meal right down her throat.

MTX weekend started this AM. I am home today and Jackie doesn't have school, so we're just hangin out. She's watching Nick Jr. Blues Clues right now. Tricia is still nappin. Tricia is doing the high jump and hurdles in track. She loves it. I beg her to be careful.......We've proud of her.

Last weekend Cape hosted the MO Student Senate with 1500 students needing a home for the weekend. We adopted two sophomore girls from St. Louis for Thursday and Friday night. Their schedule kept them very busy. What delightful people they were. We were sad when they had to leave. We wanted them to go out and eat with us on Tricia's 14TH birthday, but they were booked solid with activities. When Tricia gets in HS, she is looking forward to Student council/senate, too. Yes Tricia is 14!!!!! Where has the time gone???? I just smile when I think about that ADORABLE face at all the different ages. She's a neat person. We're blessed with great girls.

Please say an extra prayer that Jackie feels good during her MTX weekend. Love, Dede or Dianne (same person... me)

Sunday, March 10, 2002 at 10:56 AM (CST)

Hi;
We have good news for both Jackie and Dad. After an exam on Monday, Dad's Dr. said the throat cancer is gone and has been gone for two weeks. He wanted Pop to finish the radiation round for him to get the total treatment strength. We are all so relieved. He has three more days of feeling MISERABLE with a painful throat, no voice, and no energy. Knowing that it did what it's supposed to, helps quite a bit, though.
We're thankfully doing well in our Mtx. weekend. Jackie's 6MP chemo was increased because her ANC was 3900. That means her counts were actually getting too good. She's growing and requires a larger dose. Her immune system was not suppressed enough for the treatment plan. The rational is to keep the immune system from manufacturing white blood cells. The fewer WBC that are around the smaller the chance that any bad cells are made. Jackie has been eating and playing and on her feet this weekend. We are very glad. We're going to make play dough now. Thanks agaain for your prayers, Love, Dede

Saturday, March 02, 2002 at 10:46 AM (CST)

Hi-

The past couple weeks Jackie has been battling a virus and double ear infections. She spiked a fever 102.6 in the armpit while we were in Poplar Bluff watching Bear in the Big Blue House. A couple of sleepless nights later, it turned into ear infections. We had counts on that day and were relieved to see that although they were a little lower than last time, they were strong enough to continue 6MP and do our MTX weekend. 2/20/02 WBC 4.6; HGB 11.3; PLT 230; Segs 45%; Bands 3%. She had a tough time, but is finally on the mend. She was barely eating/drinking for a few days. When she gets upper respiratory stuff + chemo it makes her sick to eat. We have a recheck and more counts this Thursday. Please pray for us.

My dad just finished day 25 of 33 days of radiation. His Dr. and nurses are taking good care of him. He's got a couple prescriptions for pain and radiation "sunburn" It just amazes all of us that he is coping with this so well. He's eating well - lots of soup and still his smiling joking self. My mom is taking such good care of him. Eight more days of radiation,and six more months to know for sure that all the bad stuff is gone. Aunt Bea and Shannon came came down for a visit.
We also had a nice visit with Grandma /Grandpa Roth, Aunt Michelle and Mikala. It really perked Jackie up. Please say an extra prayer for Paul's parents. Since his dad was dx. with Alzheimer's, life is a struggle. It's heartbreaking. His goodhearted mother is taking such good care of him.
Keep us in your prayers- I do believe in miracles. Love, Dede

Sunday February 10, 2002 12:35 AM CST

Hi;

Well, a lot has happened since I updated on the 27th. Dad is on day 10 of the 33 day radiation protocol and thank God feeling suprisingly better than we all had expected. He has had low energy on the days of his treatment but with an improved voice at this point. He gets examined by the oncologist on Monday. I'll update that later. Jackie loves being with Nana and Papa. They are so good for her. And she and her precious personality keep a smile on everyone's face.

Our neice, Missy and Scott's Kate, had double knee surgery in St. Louis for two torn menicuses (SP?). Very tough. After some time off her feet she's easing back into life again. Pray for those knees!

Jackie had Vincristine last Friday. I think it was 2/5. She also started Decodron, the infamous steroid, to keep her counts up during the more intensive chemo. Her counts were slightly lower last week due to having Mtx, the week before. This past Thursday, 2/7, the Decodron increased her counts to WBC 6.1; Hgb 12.3; PLT 218 ANC 4148. (That was up from 1200 last week- We were happy with the counts.) Oh, but the side effects...... Poor girl, out of sorts and grumpy crying for 15 minutes to an hourat at time, demanding and eating salty foods with urgency 24/7. (totally NOT her personality) It just breaks our hearts. On a Decodron week, she says jump, and we ask... How high? Her last dose was Fri AM. She is getting back to her smiley little self again. We were so relieved that the Vincristine did not incapacitate her this time around. She has been weak and shaky, with leg pain, not feeling too great. We dosed her up with Tylenol. Next time, our nurse suggested Tylenol w/codeine. All these are expected side effects. It does help to know that they are temporary.

Friday was a MTX day again, she stayed home with Nana and didn't go to school. We couldn't imagine one of us not being with her during her vulnerable time. Last time we did Vincristine, we were hospitalized, and she stayed in bed for three days. With the virus she had, her counts weren't high enough to do all the protocol chemos. We had to discontinue 6MP for 2 weeks and postpone MTX for a week. This time, we were thankful to be able to continue with all the chemos on her plan. Every day, I thank God for Nana with her endless love, caring hugs and calming voice for Jackie. She absolutly kept life from coming unglued. In the midst of Kate's operation, Aunt Missy and Uncle Scott also brought over spaghetti and good times which made Jackie feel great. Our niece, Renee and Jess saved us one night with an Elmo balloon and stuffed animal piggy. We felt bad about missing our God children's birthday party in Ste. Gen. Believe me Michelle, it was a good thing that we stayed home.....enough said.

We've made it though and won't have to do this big ordeal again till May. We are so blessed to be surrounded by so many people who care. Thank you so much for the prayers, notes and phone calls from
people who don't live in Cape. If you ever want to give Jackie a message, she has a guest book on the website. It will be a very special keepsake for her, forever.
We'll update later. Love, Dede

Sunday January 27, 2002 1:48 PM CST

Hi:

We made it though another mtx weekend. Now we're waiting for Monday AM for my Dad to get started with his radiation. We met with the Southeast Hospital radiation oncologist, in Cape last Wednesday. My dad was very comfortable with the Dr. and we were impressed with their facility-protocol, procedures, equipment and staff. Dad will be able to do radiation locally. Thank God. That means no 4 hours of driving everyday for 6 weeks. It also means that Jackie will be with Nana and Papa, snuggling up with Papa on a daily basis for the good times, the jokes, bookies, Nana's great lunches, and Papa's drawings (He's a very good artist.) Nana will still be taking care of Jackie and taking her to therapy and partime preschool. She's an endlessly amazing woman who can always see the best in any situation. We are blessed. We need Dad and Jackie to be OK. Please keep them in your prayers.

Jackie's counts on 1/24 were good and holding.
WBC 3.7; HGB 12.3 HCT 36.7; PLT 238 SEGS 38% Bands 3% ANC 1517. She was nausiated and needed Zofran on Friday and Saturday. She was eating, though. On Sunday AM she woke up with a smile on her face and ate an egg, pancake and a piece of bacon! Thank God! She feels so much better when her tummy is full. Paul and Tricia went to church without Jackie and me. We have Vincristine next Friday and I am being very careful not to expose her to the virus that's been going around. I want her to be well when we go up for our spinal tap/infusion and Vincristine next week. She has had the Flu shots though. Her runny nose is finally slowing down. We're NOT taking any chances. Jackie rode horsey Clyde yesterday. She was a little bit low energy, but Clyde always puts a smile on her face.

During Jackie's nap time, Tricia and I like to steal a few moments and shop the deals at the mall. Paul catches up on sports. But, we all have to be home to watch the Rams. Fun.... Even Jackie recognizes Kurt Warner. She signs love'im. So cute. Please think of us this week. I hope everyone has a good week. Thanks for your prayers and caring..... Love, Dede

Thursday January 17, 2002 7:08 PM CST

Hi;

Jackie is doing well, thank God. Her counts were good. Her immunities were a little bit down from ANC3000+ to 1800, still very good counts. She made it through her chemo, rode horsey Clyde, and saw Winnie the Pooh at the High School on Saturday. Sunday, she did not leave the house.

We were biding our time to get through the weekend to find out about my Dad's vocal cord biopsy. On Monday, Mom and Dad found out that it is stage 1 cancer. We've been doing tons of research to figure out the best place for him to get radiation. His St. Louis ENT and also Jackie's Cardinal Glennon nurse spoke highly of Missouri Baptist's center. We have an appointment on Monday and on Wednesday, we have one at Southeast Hospital's center. We've gotten reliable reports about their center, too. We're hoping and praying that SE Hosp.'s skill,protocol, and equipment are comparable to MO Baptist. We've been told the treatment is radiation for 6 weeks, 5x weekly. It sure would be nice for my parents to not have to drive 4 hours everyday for treatment (approx 60seconds radiation) But, the drive is absolutely irrelevent. He's got to have the best treatment available. The decision will be made next week after our consults with the two facilities. We all just need him to be OK, get his treatment behind him and get back to the good times. The outlook is very good. He's feeling good, recovering like a 25 year old from his septoplasty (deviated septum surgery) It was pretty upsetting and shocking to find out this news. The thing that always happens to someone else.... Jackie is just crazy about Papa, and so happy he's up and about and back to himself. Jackie smiles,looks at him, brings a book to him and turns around to be picked up for permanent placement on Papa's lap for his animated storytelling. She and Papa and Nana are three peas in a pod. We feel very lucky. Anyway, that's it for now. Please prayers and kind thoughts in his direction.

Also, please pray for precious little angel Delaney Wright and her family. She, with her family by her side fought AML so hard with such strong spirit. It is beyond comprhension what her family must be going through. She's a role model for the world.

Thanks for all your prayers and caring. Dede

Monday, December 31, 2001 at 10:58 AM (CST)

Hi!

We hope that everyone had a very nice Christmas and will have a wonderful new year.

We had counts again this past Thursday,12/27. Thank God they were strong. WBC 5.3; HGB 12.2; HCT 35.7; PLT 248 Segs 70% Bands 3% ANC 3869.

We had a great Christmas with celebrating with both our families. Jackie was SO excited about Santa Claus and he didn't let her down. He didn't let Tricia down either!!
Jackie's tolerated her Mtx. pretty well with the help of Zofran. We celebrated Christmas in Ste. Gen on a Mtx Saturday. We had a wonderful visit with the whole family. We enjoyed Grandma Roth's holiday meals, but Jackie had a bit of a hard time eating which made her feel nauseated. Poor babe. It's hard for her to be out of her eating routine especially during a Mtx weekend. This was probably the first Mtx weekend we've been away from home. If we can keep her tummy from being empty, she does much better. We learned a lesson. But it was very nice to see our Ste. Gen. family.

We've been praying extra hard for our friend/principal, my boss, Mark. He had a heart attack on 12/20 AM. His wife led the prayers for a Christmas miracle and the prayers were answered when he regained consciousness and got to come home on 12/24 to spend Christmas with his closeknit family. Mark is a such a hardworking young man who has a heart of gold. He sets an example for children from all walks of life. We need him to be OK.

We've also been praying hard for little Delaney, and her family in Houston. (and for all children living their lives day by day in treatment.) I believe in miracles -we keep praying.

My aunt Ceil and Uncle Jerry enjoyed Crhistmas at home together,too!

Happy 2002 to everyone!
Love, Dede

Sunday, December 23, 2001 at 10:22 AM (CST)

Merry Christmas to all our family and friends -

Dede and I have both been as busy as bees getting ready for Christmas - sorry we haven't updated you lately.

Jackie's last counts were great - isn't that getting monotonous??? Thank you, God!!!! She still struggles some when she gets her methetrexate every other Friday. It still tends to upset her tummy and sap her strength - but not as much as in the past. Her walking does slow down some during that time - but we keep plugging away at developing more stamina and balance.

Our sweet girl has discovered that she likes getting presents - a lot!!! We had a Christmas gathering at Aunt Bea's yesterday and Jackie was right in there with the rest of the kids ripping off paper to get at her stuff.

We hope that everyone has a blessed Christmas and wish all the very best for the upcoming year. Keep praying for our girl. We know that God is listening. Nana

Thursday, December 06, 2001 at 09:32 PM (CST)

Hi:

We've really been blessed this week with good health. We were just amazed that Jackie tolerated the Mtx. chemo better than she ever has before. She ate, drank and played! Just when we were gearing up for a rough ride after she threw up on Friday AM after dose #1 of 4 of the Mtx, the weekend turned out good for her. Horseback riding perked her up, she loves her horsey, Clyde. Jackie's counts were good, but the fluctuation makes me nervous. Her platelets went down from 384 to 169. Her nurse said the counts were good. She was still fighting off the tail end of that horrible virus. She's doing well with her daily chemo,6MP, lately. Playing eating getting stronger and walking/talking more and more. She's blooming before our eyes. It took her 4 weeks to get over the Vincristine side effects on walking and overall motor, but the side effects have passed, just like the Dr. said they would.

Paul's employer has had a change in insurance which takes effect 12/31. We'll have to resubmit everything. Jackie has made remarkable progress, thankfully. We've been doing lots of skills testing lately. It appears that her comprehension is about 1 1/2 years advanced past her age. Once you tell her something she remembers it! She's so adorable and has a great sense of humor. She really enjoyed Tricia's Jr. High Christmas Concert. She's saying lots of HOHOHO's lately! She was very proud to see her big sister singing on stage. Tricia's semester ended with very good grades in everything. She has gotten to know that feeling of getting A's and likes it. It's worth the work. We're so proud of her. It's so hard to be a kid, an 8th grade kid. She's a sweetie. That's it for now. Thanks for your prayers. We see them in action. We get counts again next week. We'll update then. Dede

Sunday, November 25, 2001 at 03:32 PM (CST)

Hi Everybody - I scanned in a couple of new pictures today. The first one was taken about two weeks ago when we were at Cardinal Glennon for chemo. YES - that is the one and only Kurt Warner, the quarterback for the St. Louis Rams!!!!!! He visits the hospital periodically and we just happened to be there on one of those days. Dede and I were starstruck to say the very least. He and his wife were both very nice. Jackie was fussing about her spinal tap when they came in - so we didn't get a picture. When she calmed down, he was out in the hall talking to some of the kids. I called to him and asked him if he would come back in for a picture. He said "Sure" without any hesitation at all. Didn't hurry us at all. He is our hero of the year!!!!

Jackie has finally gotten over her virus (we think!!!!). She had a kind of a puny week last week - still fighting the virus and having gotten methetrexate the Saturyday before. She and her family did, however, enjoy Thanksgiving dinner at Nana's house - along with Aunt Missy and Aunt Bea and their families. We did our usual trek down to Hutson's Furniture to see the Christmas window. Jackie and cousin Shannon(age 4) really got the most enjoyment out of it.

Today Jackie was laughing and playing and I think she is ready to go back to her regular routine of therapy on Monday, Tuesday, and Thursday, and preschool on Wednesday and Friday. She is a busy girl.

We have much to be thankful for. Family, friends, and love. God is good. Nana

Saturday, November 17, 2001 at 11:36 AM (CST)

Hi

We're well enough to complete our every other week Methotrexate that we had to skip last week. Jackie is not eating a thing. Her nose is soo stuffy, runny and she's coughing. We're giving her everything under the sun to make her feel better.

She's not feeling good from the chemo/cold, but her counts were so much better this week, I feel like a miracle happened. Her platelets went from 88 to 384 (WNL!) Her WBC went from 2.8 to 6.1 HBG went up from11. to 13. Immunities went up from approx 1320 to 2684 much better. It looks like the virus has passed, but the cold symptoms are lingering, making her eating and sleeping difficult. This morning she was so out of sorts that she just signed sad and mad. Poor babe. Zofran/zantac/ dimetapp etc.,cheered her up a little but no eating yet. She got busy feeding and hugging her baby doll, Belinda.
Tricia has spent so much time snuggling up with Jackie trying to make her feel better, that now SHE's got the virus. I took her to the Dr. yesterday and Thank God no Strep throat, no antibiotics either. She stayed home yesterday is laying low today, too. What a nasty virus. We need our girls to get better.

Now that two weeks have passed, Jackie has begun taking some steps with Mom,(not us, just Mom and her PT.) Her weekend and daily chemos don't help her walking, but they don't abliterate it like that Vincristine. We're thankful she's getting past this round. She was also well enough to go back to preschool, ride her trike, and crunch some leaves with Mom and Missy! THanks for your prayers. The're helping. I know she's got a couple guardian angels on her shoulders. Love Dede

Sunday, November 11, 2001 at 10:34 AM (CST)

Hi-

Thank God things are much better for Jackie.
Her counts at the pediatrician's office were actually somwhat better than last weekend and CG hosp. It still indicated a virus. We were VERY relieved it wasn't something bacterial, like an infection in her port or strep throat, bronchitis or tonsilitis. No meds antibiotics, just tylenol for her hurting throat and head ache. She was just sleeping all day- very scary. She's so much better, now. The vincristine chemo she had 10 ten days ago make all the muscles in her body so weak. She wasn't even able to walk. Her facial expressions were very weak. When Jackie and mom and I went to the Costas Center on Thursday, both the Dr. and our nurse said that this side effect was typical and should go away in three to four weeks. It's heart breaking to see all the skills she;s worked so hard to get be erased by one Vincristine treatment. They decided to postpone Jackie's MTX this weekend till next weekend. We are back on the 6-MP, though. She is gradually getting her strength back.

Yesterday, the DR. ok'd Jackie for horsebak riding. It was the bast thing we could have done. It kind of got her little body to get past the vincristine. Her muscles statred getting in gear. Her facial expression was bigger. Huge smile was back. She pulled herself up toward the coffee table.
Last night Paul and I went to Sikeston to see Trcia sing in ALL District choir. The music was great- so much talent under one roof. We were sooo proud of her!! Being selected for this special choir was quite an honor.

While we were in Sikeston, mom and dad took care of Jackie. She started taking a few steps at mom/dad's. She also ate and ate and ate- 1/2 steak, green beans, fruit, parsley potatoes. etc. And, she played and played with Nana/Papa. Our girl is back!! We all feel much better, now. Thanks for your prayers, Love, Dede

Tuesday, November 06, 2001 at 01:33 PM (CST)

Hi-

Jackie's been running a fever since Oct.31.
Some coughing and she's had no energy. We spend a nightmarish night at the ER at Cardinal Glennon got there at 10:15 pm finally got admitted at 1:30. We came home on Sunday after IV fluids and a couple rounds of antibiotics when her fever broke. Her counts were OK but platlets had dropped to 89. That is the first thing to drop after chemo or a virus. The night of her chemo and interthecal MTX w/anesthesia, she ran 102.8. We were scared out of our minds. Her fever gradually went down over a course of a few days, but then would't go down to normal. She has just slept all day. We going to our Pediatrician an 4:00. We hoping it's just a cold that won't go into her chest. The fever has gone on since Wed. night. Her chest x-ray was clear and culture was negative this weekend at the hospital. She's also taking Decodron this week. It may be a large contributing factor to her irritability. We need her to feel better and play. PLease say some extra prayers for our precious girl. We'll update more later.... Dede

Monday, October 29, 2001 at 10:32 AM (CST)

Hi!

Well we were really blessed this Methotrexate weekend. Jackie ate, drank and played. Wow! We never quite know what to expect. Her horseback riding was changed to Saturday and we were unsure whether she would feel up to it. She WAS!! She rode for an hour and refused to get off the horse (Clyde) three times!! Hahaha. She also ate steak, broccoli, pizza, donuts, bacon, pasta, bananas, grapes and apples. Needless to say we were thrilled. It seems like when she eats, she feels less nauseated. We did her her the antinausea med, Zofran, a few times when she seemed uncomfortable - definately before horseback riding.

Jackie has been fighting off that semi-nasty
cold/cough for 6 weeks. Thank God- no fever but a runny/stuffy nose that evolved into a post nasal drainage cough. We'ew literally been alternating Dimetapp/Benedryl round the clock for weeks. It has really helped her. It's finally getting better thankfully with no infection. It makes us crazy with worry.

Here's her latest counts:
WBC 3.8
HGB 13.
HCT 38.
PLT 199
SEG 40%
ANC (total immunity 3.8 x 40% = 1520) >,1000 or >50% is good

They were pretty good. Not quite as high as two weeks ago. Her ANC was 2300, HGB was 14 approx same WBC. NO blasts- (evidence of leukemia). Maybe that lingering cold has taken a little toll on her precious little system. Still, these counts were considered good by our DR/Nurse at CG hospital. They were happy with them. THey say that the do fluctuate.

We carved a pumpkin yeasterday. Jackie absolutley loved getting her hands into all the cold, gooey stuff! She had a lot to say about it!

I'm home with Jackie this morning. Mom/Dad are visiting Dennis/Noriko and the boys in Seattle, and Missy, bless her kind heart, is singing at a funeral for a friend's family.

We had PT this morning. Jackie wasn't exactly motivated after her MTX this weekend. She was happy, though.

I'm not looking forward to Vincristine (Fast push IV)and interthecal Methotrexate ITMTX( that's in the spine under anesthesia) this Thursday at Cardinal Glennon Costas Center. I'm worried what these nasty chemos will cause her a setback in her walking. We don't have a choice. Whatever, the side effects won't last forever. This is the protocal we have to do every three months, inaddition to our regular 6mp Bactrim and MTX. She also be on steroids Decodrone to beef up her counts. These will make her Grumpy and want to eat constantly. So, we'll love her and feed her nonstop. Sorry about typos. Jackie needs me now. Thanks for your prayers and for caring sabout us. DEDE

Thursday, October 18, 2001 at 08:15 PM (CDT)

Hi All-

We weathered another weekend of methetrexate without too much difficulty. Last week Jackie's blood levels were even higher than they were two weeks before that. She always has a little trouble eating for a day or two after her chemo - but she is still tolerating the whole thing quite well.

Jackie is developing such an adorable sense of humor - she makes me laugh a lot. She continues her increase in independence. She lets us know loud and clear exactly what she wants to do for herself. And also what she wants to eat.

Jackie's various therapies are going great. She working really head in physical therapy to go up and down stairs and to increase her stamina for walking greater distances. Her fine motor skills continue to amaze her occupational therapist. And her speech therapist has her making all kinds of sounds along with using her sign language. You can always understand "Tricia" when she says it - she just adores her big sister.

Sometimes we feel like we take a step back for every two steps forward. The chemo does take it out of her - but she is always moving forward and that is what matters.

Thanks once again for being a part of our support system. Nana

Thursday, October 04, 2001 at 01:59 PM (CDT)

Hi Everyone!!

Jackie is doing just great!!!! She is tolerating this phase of chemotherapy very well. She is getting stronger every day - and smarter, too. She really has everyone - including me - jumping thru her hoops. We are trying to intrduce a bit more discipline into her life now that she is feeling so good. Needless to say - she doesn't like it. Mom and I have both had her in the timeout chair recently. It's hard to keep a straight face - but - we don't want a little "bratinella".....

Jackie can now balance - and walk all over the place by herself. If she is in a hurry, she still wants to crawl - the walking is still pretty slow. But she is so proud of herself when she walks - she just beams.

Blood levels continue to be excellent. Her doctor is very optimistic about her future. Keep praying - we still have some humps to get over. Thanks to all for your continued love and support. Nana

Saturday, September 22, 2001 at 02:10 PM (CDT)

Hi

In the midst of all the inconceivable heartbreaking loss of our country, it seems like no one is taking anything for granted anymore. Even Jackie had tears streaming down her cheeks listening to the Battle Hymm of the Republic for about 3 minutes during the memorial service. The channel was turned quickly. I am so very sad for all the people who can't just turn the channel. We are praying very hard and are trying to help in any way we can think of.

Since this third phase of chemo began, Jackie has thankfully become stronger and stronger taking an increased dose of 6MP every night. We are counting our blessings. Oral methotrexate began in mid August when we stayed at the Ronald McDonald House. We skipped a week and the next methotrexate fell on Labor Day weekend, our weekend at Camp Sunrise. The weekend was sponsored by the American Cancer Society.

Camp Sunrise was at the YMCA Camp in Potosi, MO. It was a very uplifting event. It was about living. We met so many unforgetable people who shared their insights and experiences with us. It was a group of people who didn't have to do a whole lot of explaining to each other because the common philosophy is to take one day at a time. Enjoy and appreciate what you can and support your friends in times of need. We felt very lucky to be able to attend the weekend. Our family hopes to return as volenteers in the future. There were groups of children of all ages. Tricia had fun with a sibling group ages 11-14. Jackie had a great time playing with the 3-4 year olds. Paul and Tricia went horseback riding twice. Jackie had a pony ride. Tricia and I rode the paddle boat and we all too a pontoon ride (Tricia got to drive!) We did lots of other special things, too. I got to start a Creative Memory photo album. The materials had all been donated. It was so very nice. We had a carnival and clown dressup party, too. We were tired, but it was such a special weekend. Jackie was feeling pretty rough at the beginning of the weekend. It really scared us. She slept till 11:00 in the morning, after barely eating breakfast on Saturday AM. She gradually felt better as the weekend continued. She just wasn't eating or drinking much. We worried about her all weekend. Three of our Cardinal Glennon nurses were there and helped us keep tabs on on Jackie was doing. Zofran (antinausea med)was our best friend.

On Tues. after Labor day, it was back to work/ school. It was so difficult to go back. My mother is so gifted in caring for Jackie. Jackie would literally eat anthing Nana would cut into tiny bitesize pieces! Jackie feels bigger in the afternoons than she does in the mornings!

Jackie's counts are getting stronger. Liver enzymes appear to be decreasing. We are so thankful. This past weekend, we did the oral mthx. again. I made sure Jackie ate all her meals at home (Nana/Aunt Missy were at a Surveyors convension in Branson) I was incredibly amazed that Jackie ate and drank and played all weekend. She actually tolerated the Mthx! It was a miracle and it was a first! We did give her Zofran to keep her from getting nauseated. We always give her that when she takes heavyduty chemo, but sometimes she gets wiped out anyway. We would be greatful if she could tolerate the next two years of chemo and be able to eat drink and play, too. The pattern appears to be no pattern. Hopefully this will start a trend for her.

To maintain her counts when transitioning to a different phase is very important. Her Dr. said we could do our next blood test in Cape because she's been consistent with her counts. Her immunities are within an acceptable range now, too. I can't ever be too comfortable. The fear sickness is always looming. We can't drop our guard and put her in a position to be exposed to germs. Her little immune system is so vulnerable. We are very lucky that all the people who "hang around with Jackie" ask themselves, am I well?? before getting into her germ bubble/personal space. If we can just get through the cold and flu season and keep her well, it could really give her the edge. We're all getting our flu shots.

We are excited to be starting back to horseback riding. SEMO Center for child studies is really fun for her, too. She's always delighted to make that turn onto Nana/Papa's street and have Papa come and get her in the car!! She loves visits from Aunt Missy, too. She's also been enjoying cousins Caleb and Grant, Carrie, Renee, Jessica, Uncle John and Aunt Donna (her sign for Aunt Donna is "book" with a big smile.) She loves the books Aunt Donna has given her.

We were overwhelmed when Jackie was nominated for an award for National Rehabilitation Week with St. Francis Hospital. She sure earned it. Tricia was so sweet. She skipped a day of basketball try-outs to see her Jackie get her award. Friday she found out she made the team! (basketball):) We're counting our blessings for our girls. We're soooo proud of them.
Thanks for your prayers andfor reading our journal, Dede

Monday, September 17, 2001 at 08:28 PM (CDT)

Hi Everyone -

We are beginning to sound like a broken record. Jackie is doing just great. Her blood test last Thursday showed excellent blood levels. Her doctor is very pleased. We are feeling more and more optimistic with every day that passes. Our sweet darling girl is going to lick this thing and live a looooong and happy life.

She is getting so much stronger. She can walk from my living room to the back door - that is - if she is motivated... She wanted to go outside and swing and I told her she had to walk all the way to the back door first. She grumbled at me a little and then proceeded to do the job. As she gets stronger her stamina is increasing - and she is really proud of herself when she walks all by herself.

Jackie is going to go back to horseback riding therapy within the next few weeks. She does love riding a horse. She is quite adventuresome and so nosy!!!!

She will have another blood test a week from Thursday. We will let you know how she is doing at that time.

Thanks for all your prayers and support for Jackie - and God Bless America - the greatest country in the world. Nana

Monday, September 17, 2001 at 08:28 PM (CDT)

Hi Everyone -

We are beginning to sound like a broken record. Jackie is doing just great. Her blood test last Thursday showed excellent blood levels. Her doctor is very pleased. We are feeling more and more optimistic with every day that passes. Our sweet darling girl is going to lick this thing and live a looooong and happy life.

She is getting so much stronger. She can walk from my living room to the back door - that is - if she is motivated... She wanted to go outside and swing and I told her she had to walk all the way to the back door first. She grumbled at me a little and then proceeded to do the job. As she gets stronger her stamina is increasing - and she is really proud of herself when she walks all by herself.

Jackie is going to go back to horseback riding therapy within the next few weeks. She does love riding a horse. She is quite adventuresome and so nosy!!!!

She will have another blood test a week from Thursday. We will let you know how she is doing at that time.

Thanks for all your prayers and support for Jackie - and God Bless America - the greatest country in the world. Nana

Friday, September 07, 2001 at 09:05 PM (CDT)

Hi Family and Friends -

It has been a busy two weeks. Jackie's last blood and liver counts were good. Her liver enzymes were down to 500 - which is an OK number for chemotherapy. Her blood levels continue to improve. Her little cheeks are as pink as they can be.

She started on her new phase two weeks ago. Different dosage of methetrexate dlivered orally every other week and 6MP every day. Her appetite dips now and then but basically she is eating up a storm!!!!

Mom is settling into her school year routine and I am happily caring for our little angel.

Back to preschool last week... She loves it. She is becoming more and more independent every day. She has a mind of her own and definitely lets everyone know exactly what she wants. It is hard not to just give in to her and let her do and have everything she wants - but we do the best we can. She is generally a very happy girl. She loves to play, play, play.

So, dear friends and family, we have gotten through an extremely difficult time with your continued prayers and support. Oh - please don't leave us now - we still have a very long journey before us.

Our thanks and love to all, Nana

Sunday, August 26, 2001 at 10:20 AM (CDT)

HI

We started the next phase of chemo as outpatient at the Ronald McDonald House.(a wonderful place with an incredible amount of support and love) A group of great people from the Canaan Bapist chuch brought a roast beef dinner- Wow what a chamnge from hospital food. We're vowing to do unto others as others have done for us. Believe me, it changes you forever.) When the Dr. checked Jackie's oral methotrexate level, before and after, her after level was skyrocketing. They were looking for something around .2, hers was 1.84. That definately explained why she felt so yucky and didn't want to eat. We gave her all the antinausea meds we could possibly give her and took her to play with cousin Shannon on Friday night. She ate 3 bowls of popcorn, and a sausage pancake on a stick and a big glass of Sprite. We celebrated, that was just about all she ate during that whole day. Saturday we gave Jackie the meds and went to the zoo with the Beig family. What a precious bunch of kids! Jackie LOVED the animals and took a huge nap on the train as we circled the zoo. Thank God, it was a beatiful day. No one even broke a sweat. We figured we'd stay a couple hours but we were there well into the afternoon. Since Jackie napped, she woke up ready to see more animals. No eating, though she did drink. On the way home we were overjoyed when she ate a corndog (not my choice but works for her!)and french fries. No drinking. THAT makes me worry. The more she eats and drinks the more toxicity she can flush out of her 25lb precious little self.

This past week, the school year began, so I'm back on a working schedule. It was pretty tough for me to get through this week. I can't say the same for Jackie though. She was just beside herself awaiting to join up with her most beloved NANA/PAPA. These two people, along with Aunt Missy (and lots of other family members) truly are a gift. Jackie loves to be with them. Mom will be taking Jackie to therapy and presenting great big lunches to her. Tricia, Paul and I have actually commented that Jackie feels bigger in the afternoon when we come to take her home from Nana/papas, than she does when I drop her off. Seriously, it amazes mre how much Jackie will eat for Nana.

We go up to St. Louis this Thursday for a blood/liver test. We're hoping and praying that we're not in the toxic range. We need to be able to continue chemo uninterrupted.

Jackie is also staring back to preschool. She is very excited and happy. Please pray she gets through the cold and flu season without a cold or flu. Her immune system is weak, but there comes a time when you have to re-enter into everyday life. It's scary for us, but more than that she is sooo happy about that we and the medical team feel it's the right time to do it. Her Nana will take inventory for any sicknesses in her class, and can always bring her home. Please pray that her cheeks stay pink and healthy, her counts stay good, and that she eats and drinks.
Sorry about typo's Jackie needs me NOW!

GOOD NEWS: Our Aunt Ceil is out of
intensive care. Thank GOD!!!!!!!!!
. DEDE

Friday, August 17, 2001 at 11:56 AM (CDT)

Jackie and Mom and Dad went to St. Louis yesterday where they have begun the next phase of chemo. She will only have to go back every 12 weeks now. Her chemo will all be oral for this phase. She will get her blood tested every two weeks here in Cape. I talked with Mom last night and after a brief bout with some nausea, Jackie is now feeling pretty good and eating quite well. Her blood levels are excellent. Her liver enzymes level has risen to 608 - still within the limits which allow the chemo to continue.

Jackie is enjoying the St. Louis Zoo this morning and will be home this afternoon.

Mom goes back to school on Monday so Nana takes over as daytime caretaker. I can't wait to get her back. She is such a joy in our lives!!!!

As always - we appreciate your continued support and prayers. Nana

Tuesday, August 07, 2001 at 03:57 PM (CDT)

Hi,

Jackie had a bone marrow biopsy/spinaltap for her study last Friday. Her counts were
WBC 2.34
Hgb 10.8
Hct 33.9
Plat. 260
ANC (immunities) 407
(ANC needs to be be 500 to get IV methotrexate. We would like for it to be >1,000.)
Her liver enzymes were elevated again (approx 500), but not to a toxic range >900.
45 is normal. Hers were as high as 1500, very scary. That's when we stopped daily 6-MP chemo for a week and postponed Methotrexate weekend #6 for two weeks. We are thankfully finished with the weekend infusions. I think her amazing little body of steel is protesting. We want her counts to get back up where they were. (Hgb was 12 Hct 40WBC 6.9;) Chemo is supposed to immunosupresse her and that is what it's doing. Hopefully now that we have the mass quality chemo behind us, her counts are supposed to go back up. We're starting phase three of therapy (Intensive continuation- It will about a year) Methotrexate/6mp by mouth with blood tests everyother week and IV chemo every3 months. We have to go up to St. Louis next week for two days so the Dr. can monitor her all levels to getthe appropriate amount of chemo for her. Then Continuation maintenience for 1 1/2 years (gradually less chemo) We'll get a blood test here on Thurs. We just want to enjoy life. That's what we are doing. (I did,however, sprain my ankle by tripping over my shoelace scrambling to get things together so we could take Jackie to Cardinal Glennon on the awful morning with liver problems.) Thank God her liver is recovering faster that my ankle. It is absolutely nothing compared to her liver. Nothing but a big black boot and about three trips to the Dr. I don't even care. Hopefully we'll get to go to the zoo next week while we're in St. Louis. Thanks for your prayers and caring-Dede

PS Please say a prayer for my Aunt in the hospital in Washington DC fighting very hard to get past some tough health issues. Thanks

Tuesday, July 31, 2001 at 11:50 AM (CDT)

For those who missed my brief message last Friday - Jackie did get to stay and have her final 24 infusion of methetrexate. Her liver enzymes went down to 208 from 1500 the week before. Her blood levels were GREAT!!!! We know Someone is watching over us!!!! It was an uneventful weekend. Aunt Bea (Mom's sister Eileen) and Aunt Donna (Dad's sister) visited and helped the long hours to pass most pleasantly. Jackie got to come home Sunday night which pleased everybody.. (No trip to St. Louis for me on Monday - as well as Mom and Jackie getting to sleep in their own beds.)

We are now entering into the next phase. Jackie will received oral chemo for the next 2-3 years. We only have to take her to the hospital every twelve weeks. If she remains in remission, the chemo will be dicontinued - but she will be monitored periodically for the rest of her life.

We are ready for time to pass.... Thanks to all for your continued prayers and notes of support on the webpage. Nana

A little P.S. from Nana. My sister-in-law, Ceil, is in the hospital in intensive care in Sterling, VA. A mention to the Man Upstairs on her behalf will be appreciated by all of her family. Thanks.

Saturday, July 28, 2001 at 09:58 AM (CDT)

Jackie's liver enzymes were down to 208 from 1500 last week. So we are now in the process of our LAST 24 hour infusion of methetrexate. Hooray!!!!!! her blood levels are really good and she is eating. More on Tuesday after she is home. Nana

Friday, July 20, 2001 at 11:57 AM (CDT)

Today is Jackie's birthday!!! She will put up three fingers to show you and smile real big.

We had a small crisis yesterday. When Jackie woke up she was very lethargic. She scared us big time. Mom called the Costas Center and they said to bring her up right away. So we took off in a hurry!!!!

She had blood work done and we found that her liver enzyme level had climbed to 1500. It was 950 last week. The doctor assured us that this is not uncommon and he has taken her off all her chemo for the next week. Being off chemo for a week or two will not jeopardize her remission. The good news is that her blood levels are even higher than they were last week. Her little cheeks are as pink as they can be. Today she is eating again. The doctor says the important thing is to make sure she drinks and eats for the next week. He says we should be able to do that last 24 hour infusion next week.

So - we are still on our usual roller coaster ride. Will update all of our fans when we have more news. We can hear your prayers storming heaven. Nana

Sunday, July 15, 2001 at 12:02 PM (CDT)

Hi all!!

We had a hectic day on Friday. There was an emergency at the Costas Center so we were late getting started. After we got admitted and upstairs, it was discovered that Jackie's liver enzymes level was higher than it should be so she could not get her 24 hour infusion of methetrexate. So all came home on Friday night. We will have to go back next Friday and try again. Dr. Gale says this is not a common side effect - but that it does happen when they are giving these high doses of methetrexate. Thank goodness, the next one will be the last of the 24 hour ordeals.

The very good news is that Jackie's blood levels are terrific. The doctor is very pleased with them. So - although we have had this little glitch, she has not really lost any ground on her road to recovery.

She is continuing to get stronger, eating better now than last week since she didn't get the chemo, and wanting to walk by herself much more.

We are going swimming at Aunt Missy's house today. Jackie loves to be in the pool. Thanks to all for your continued support. Nana

Monday, July 09, 2001 at 01:42 PM (CDT)

Hello Everyone!!!

Our darling girl is doing great. She is chattering all the time now. I can't believe that she will be three years old on July 20. She wants a Big Bird Birthday Cake. So - you know that is what she will have.

We go back to Cardinal Glennon this Friday for our final weekend of methetrexate infusion. I know that Mom and Dad certainly won't miss those long weekends.

Jackie has just been enjoying life for the last three weeks. She loves to swim in Aunt Missy's pool - and can propel herself across the pool now. Of course, she has her various therapies and is getting stronger all the time. She thinks she can do a sommersault by herself. She gets down on her knees and tucks her head under and then rolls over and laughs. She doesn't get any the less adorable as time goes by.

After this next weekend, she will enter the maintenance phase of her chemotherapy. She will have only oral meds for the next 2 to 3 years. After that - with all the prayers and support she receives in addition to the wonderful medical care, we know she will be in permanent remission. Stay with us. We need you all. Nana

Monday, July 02, 2001 at 01:10 PM (CDT)

Jackie has thankfully had a good week. We were absolutely amazed at her eating and drinking during our Methotrexate weekend #5.
Her 24 hour Methotrexate level was 8.3. (The last one was 9.3) Her 48 hour level was .11 (The last one was 2.6) It was like a miracle that her levels were so much lower. We got to come home on Sunday instead of Monday - with no throwing up either. Jackie's levels are lower since she has not been taking Decodron. They are OK. Her ANC (total immunity/white count x bands/segs)is 620. To receive chemo, the ANC needs to be 500 or >. Since we started this phase of chemo, her ANC has typically been between 1000-2000. A few weeks ago it was borderline and we laid off the 6MP. She also had a runny nose then. She thankfully does not have one now. We're keeping Jackie away from crowds so we can keep her well. Our nurse told us that the object of therapy is to immunosupress her so no bad cells can be made in the marrow. I think that's happening. I'm constantly terrified and praying that her protocol will keep her in remission FOREVER. Aunt Donna, Paul's sister and a college friend, David, helped us entertain Jackie and haul us through the long hours of the weekend. Jackie had two sores in her mouth from the methotrexate. It broke our hearts to pieces. They are gone now. I know that they must have hurt her. She was kind of emotional this past week. Her eating and drinking was off this week but are pretty much OK now, not as good as it has been. Over the weekend, 6/30-7/1, Jackie began getting the confidence to say anything and everything with her precious little voice. She's sooo proud of herself! SO ADORABLE!!!! She also has more energy to walk and move around. She looks good, too. It's very difficult to go for almost 3 weeks w/o a blood test. No fevers. Our Dr. doesn't let us go w/o tests unless he really thinks it's OK not to have one. We/l be getting them every other week until Jackie is 5. Most of her meds in the next phase will be oral. Every 10-12 weeks, she'll get outpatient infusions at the Costas Center (Cardinal Glennon). I hope that this message board in working out. We don't usually hear from anyone. Please keep praying for Jackie, our precious little, spunky girl.

Sunday, June 24, 2001 at 10:36 AM (CDT)

Good Morning to all of our family and friends....

This is a three day weekender for our Jackie. On Friday Dede, Jackie and Nana did our usual drive to St. Louis. All blood levels are fine!!!!! Jackie woke up quite quickly from the anesthesia that she gets for her spinal tap. She was climbing out of bed so we took her back to the playroom to play while we waited for our admittance papers to be processed. She managed to play with just about every toy in the room. All of a sudden she ran out of steam and wanted to sleep - so we took her back to the treatment room and she took another snooze. She accidentally pulled the needle out of her port so we did have a little trauma while it was replaced. She still hates to be messed with - but she gets over it quickly.

She has not refused to eat this weekend. We are amazed. Consequently she was quite lively yesterday and enjoyed Aunt Donna's visit very much.

I talked with Mom this morning and the medicine, as usual, has slowed her down today - but she is still in good spirits. She has been hanging on Dad - you know how he hates that!!!!! Maybe - if we are lucky - she will get to come home today. If she has to stay until tomorrow, her chauffeur, Nana, will happily be there to get her and Mom.

We don't go back for three weeks - and that will be the last weekend stint. She will have completed the second phase of chemotherapy and will go into the maintenance phase. During the next two years she will continue to take oral chemo and her blood will be checked regularly here in Cape.

So, although we have come a long way, we still have a longer journey to complete. Thanks to all for your continued caring. Nana

Friday, June 15, 2001 at 01:58 PM (CDT)

Hi Everybody - We know you all like to hear good news about our sweet pea - and we have it today. Dede, Jackie, and Nana went to St. Louis yesterday for a "one dayer". Jackie's blood levels are all excellent. Her immunities are way up and everything looks good!!!

We saw Dr. Goodrich, her eye doctor, also. He says her eyes are doing fine. She was due to have her eyes dialated but he decided not to put her thru any more trauma at this time. Next visit, he will to the dialation.

We saw Dr. Anderson, too. (He is her orthopedist). He can't believe how well she is doing considering her situation. He told us that the fact that she lost so much strength at the beginning of her illness will not have anything to do with her long term progress. An x-ray of her hips and legs showed they are all in appropriate position for continued growth. We love this man. He really cares about Jackie. As we walked her down the hall when we were leaving, he watched with a gleeful look on his face.

As she continues to regain her strength, Jackie is initiating movement more and more. She wants to balance on her own again and continues to get more independent. She is also a very stubborn little angel. She will walk across the room for her physical therapist - but complains like crazy when we make her walk at home. I think she says to herself - the therapist won't quit until I walk so I might as well do it - but I can get around Mom and Nana. It is still much faster to crawl!!!

Jackie has been pretty cranky this past week because she has been on steroids. She is now through with them for another month so we expect to get our good-natured darling back in the next day or two.

We are getting very close to the end of Phase Two. At the end of July she goes on maintenance. Keep praying.... your prayers are being heard. Nana

Saturday, June 09, 2001 at 08:05 PM (CDT)

Thank God, Jackie's immunities were up this week. Last week they were 8% Total immunity = ANC <1000 but >1000 including Monos. Friday. 6/8, they were 30% ANC 1200+. ANC is white count x Bands/Segs%. Mono's can also be considered immunity. Our Dr. also counted her Mono's as immunity also during the 6/1/01 treatment. ANC needs to be >1,000 to have a chemo treament. This week is better. 2,000 or 50% is average. Sorry is this is confusing. Other count are holding. We're thankful and we're being careful. WBC 4.6 HCT34. Platlets are good. Jackie is eating and playing etc. She is taking dexamethosone (decodron), a steroid, this week, so she is feeling emotional. She lost 6oz., this week, (Friday) after her methotrexate weekend. I hope she will eat non- stop and gain this week on the steriod. It will build up her bone marrow. It would be nice if it cleared up her runny nose, too.

Jackie is such a gift, so precious, smart and funny. She took 88 steps on her own in PT this week! She can also say "Hi Daddy", which brings tears to our eyes. (She also identifies #'s, shapes, colors, and letters and knows same and different and matches objects, wow!) 2.11 mos. She has been spending her time wisely. She just kind of picked up these things through spending quality time with Nana, Mommy/Daddy, Aunt Missy, etc. She also has fun playing computer games. She can even click the mouse! Ha! It is very frightening how fast things can change. I hope and pray things always change for the better. We want her to enjoy life!

On the lighter side, we picked up Tricia at camp in Branson on Wednesday, and came back on Thursday. Tricia had a GREAT time Did Jackie come with us? Of course not. No unnecessary long bye-byes for Jackie! We're blessed with a Nana and Papa who gave us peace of mind so we could make a fast road trip. Both girls had a good time. A little bit of Tanger Mall, also. Crazy week,fast, but fun. We are trying to live by the day by day theory. Thanks for your prayers and caring.

Tuesday, June 05, 2001 at 01:55 PM (CDT)

Jackie is home again!! She did have to stay until Monday to get all the chemo flushed out. Since she had run a fever, Mom and Dad were just as happy to stay one more day. She seems to be tolerating the chemo better after having had additional fluids to flush it out. She ate a whole piece of pizza last night for supper and is eating well today. Mom and Dad are going to Branson tomorrow to pick up Tricia from camp - so Nana and Papa get to have sweet pea all to themselves. She is such a joy when she awakens in the morning.

Friday Jackie goes back to St. Louis for another one day visit. She will get just one chemo shot - and then back home. We will be glad to have another blood check. Since her immunities were down last week, Dr. Gale has taken her off of her daily oral chemo med for this week. Hopefully - with her cold cleared up and no med for a week, her immunities will shoot back up. As always, we will keep all of her family and friends informed. We all feel your love!!!!

Sunday, June 03, 2001 at 12:35 PM (CDT)

Hello friends and family!!! Jackie is up at Cardinal Glennon for one of her weekend stints. Her blood levels were good when checked on Friday - but her immunities were down. Dr. Gale says this is not because of the leukemia - thank goodness for that. He believes she is fighting off a virus. She had a runny nose and itchy eyes when we went to the hospital Friday. Now it appears she has caught a cold. She ran a temperature of 100.6 last night - but it is down this morning. Of course, temperature always makes us a little nervous. It's not the virus - but the threat of secondary bacterial infection which can play havoc on her chemotherapy.

Mom (Dede) said this morning that she taught Jackie how to sign "never" and then asked her if she wanted to eat now, later, or never. Jackie signed "never"!!! So she is acting pretty normal on that score. She does not want to eat after a methetrexate infusion. Not eating doesn't seem to affect her weight. She still weighs 25 pounds. That has been pretty consistent since she went off the prednisone.

Our angel continues to smile and to be her incredible self. We feel everyone's prayers and support every day. Thanks to all for your continuing caring. Nana

Tuesday, May 29, 2001 at 08:00 PM (CDT)

Hi!

Jackie thankfully has had a great week. In the past two weeks, her appetite is like it used to be, really good. She has played and played and played. She propelled herself across the cool pool with Nana. (Nana is definately a better woman than us ooo brrr!!!) Nathan, Justin and Francis along with Uncle Dennis and Papa are also enjoying a good brisk swim. Missy and I are thigh high while Aunt Noriko smiles and waves!! All our teenagers are pool side. We all have been enjoying the sunshine. Then, I get that feeling that soon it's time to return to the hospital for our protocol this Friday. It's a good thing that the Cardinal Glennon people are wonderful, I don't know how we'd get though the weekend if they weren't. We'll do a lot of playing, "tapdancing" and praying and soon we'll be home. I hope and pray no relaplse ever, ever, ever. A couple more days before we go.

I am so happy that school/work is out for the summer-finished my room today. I do miss the genuineness and preciousness of the students (including my darling nephews!) and my friends at work. It's a strange relationship that work friends have-closer to family than friends. You can kind of take it for granted. I don't know what I'd do without them, family and friends. Thanks for your prayers and for caring so much. Dianne

Sunday, May 20, 2001 at 08:43 PM (CDT)

Hello friends and family:

Jackie had a good week. We stayed an extra day to get the Methotrextate flushed out. It was well worth it because I can't depend on Jackie to eat or drink when she is getting that particular treament. She also gets chemo every night by mouth (6MP), which her body tolerates adequetly.

Her blood counts continue to be in remission. At the time of her dx, these were her counts: White blood cells= WBC 72.4 (normal 5.5-15.5) Hemoglobin=Hgb 9.3 (11.5-13.5) Hematocrit= Hct 27.0 (34-40). Platlets 19 (100-400) with 59% immature leukemia cells. It was devastating. She was high risk due to such a high white count. She received platlets and blood several times. She was moved to standard risk when her tests showed her chomosomes were favorable. Her counts gradually improved to a remission after approx 4 weeks with 0% immature leukemia. Her own bone marrow was starting to produce healthy cells. Our latest test showed WBC 4.6 Hgb 9.3 Hct 34 Platlets approx 624. We feel all the prayers for Jackie are being heard.

Because a remission would only last about 2 months w/o chemo, we have been doing intensive chemo most every Friday except a few to give her bone marrow a chance to produce healthy cells. We also go up every third weekend till the end of summer. The weekends are mental and physical challenges. The nightly 6MP is very tricky to give to her. We try to hide it (a crushed pill) in ice cream, applesauce, pudding etc, but we can't fool her. She hates taking any and all meds. We're trying to back off of Zantac, too. She can't stand it anymore. T-W-Th of each week, she also gets Bactrum 2x daily, an antibiotic to prevent strep pneumonia. After this summer, we'll have 1 1/2 to 2 years of maintenience chemo.

Everyday Jackie gets up, is still in remission, eats, smiles, plays and doesn't have a fever, we are grateful. She is our role model. She also knows all types of medical vocab and has indicated she wants to be a doctor (not an SLP?) when she grows up. We want to make sure she enjoys her precious life. Thanks again for the prayers and friendship. It really helps knowing that so many people care.
Dede and Paul

Sunday, May 20, 2001 at 08:43 PM (CDT)

Hello friends and family:

Jackie had a good week. We stayed an extra day to get the Methotrextate flushed out. It was well worth it because I can't depend on Jackie to eat or drink when she is getting that particular treament. She also gets chemo every night by mouth (6MP), which her body tolerates adequetly.

Her blood counts continue to be in remission. At the time of her dx, these were her counts: White blood cells= WBC 72.4 (normal 5.5-15.5) Hemoglobin=Hgb 9.3 (11.5-13.5) Hematocrit= Hct 27.0 (34-40). Platlets 19 (100-400) with 59% immature leukemia cells. It was devastating. She was high risk due to such a high white count. She received platlets and blood several times. She was moved to standard risk when her tests showed her chomosomes were favorable. Her counts gradually improved to a remission after approx 4 weeks with 0% immature leukemia. Her own bone marrow was starting to produce healthy cells. Our latest test showed WBC 4.6 Hgb 9.3 Hct 34 Platlets approx 624. We feel all the prayers for Jackie are being heard.

Because a remission would only last about 2 months w/o chemo, we have been doing intensive chemo most every Friday except a few to give her bone marrow a chance to produce healthy cells. We also go up every third weekend till the end of summer. The weekends are mental and physical challenges. The nightly 6MP is very tricky to give to her. We try to hide it (a crushed pill) in ice cream, applesauce, pudding etc, but we can't fool her. She hates taking any and all meds. We're trying to back off of Zantac, too. She can't stand it anymore. T-W-Th of each week, she also gets Bactrum 2x daily, an antibiotic to prevent strep pneumonia. After this summer, we'll have 1 1/2 to 2 years of maintenience chemo.

Everyday Jackie gets up, is still in remission, eats, smiles, plays and doesn't have a fever, we are grateful. She is our role model. She also knows all types of medical vocab and has indicated she wants to be a doctor (not an SLP?) when she grows up. We want to make sure she enjoys her precious life. Thanks again for the prayers and friendship. It really helps knowing that so many people care.
Dede and Paul

Tuesday, May 15, 2001 at 07:57 AM (CDT)

Good Morning to all of Jackie's friends!! We have completed another weekend - this time without any breathing problems.

Jackie's day started early on Friday. She had to be at the hospital at 7 am. After checking her blood levels - WHICH ARE EXCELLENT - Dr. Jines, her dentist, was first on the agenda. He spent about 1 1/2 hours working on her teeth after she was put to sleep. Then came the usual spinal tap. That afternoon she started her 24 hour infusion of methetrexate.

Tricia came up on Saturday and stayed overnight so the family could spend Mother's Day together. Jackie had not flushed out enough of the chemo on Sunday to be released, so Paul brought Tricia back home and Dede and Jackie stayed overnight again. Nana picked them up on Monday.

Staying that extra night seems to have been beneficial because Jackie actually ate french fries (which she really loves) on the way home and drank some Sprite. She was also very cheerful.

We are fortunate to have such a caring group of health professionals working with us. They are always working to keep any trauma to a minimum. Dr. Gale wears funny ties which the kids love and Dr. Chou makes animals from balloons. The nurses talk soothingly as they hurry to do what they must. Dr Jines has seen her on his usual day off in order make it as easy as possible on Jackie and on the family.

Jackie continues to gain strength each day. She whizzes around the house with her walker and is now walking alone again. She is such a smart cookie. When I say - time to eat - she signs play now, eat later and then gives me her adorable grin which is, of course, impossible to resist!!!

She has three weeks off again. I don't think we will not be as concerned about blood levels this time since she has had no setbacks at all. She truly has an angel on her shoulder.

Will be back next week with another update.

Wednesday, May 09, 2001 at 11:20 AM (CDT)

Hi everybody - Jackie had two great therapy sessions this morning. Speech and occupational. Her thoughts and movements are maturing so fast we can hardly keep up with them.

Thursday night Dede, Paul, and Jackie will go to St. Louis and stay the night in order to be prepared for some early procedures. In addition to the usual spinal tap by Dr. Gale, Jackie will have her teeth fixed by Dr. Jines, her dentist. She has some problems which go back to prematurity. It is important to fix these problems so that she doesn't develop any bacterial infections.

They will stay thru the weekend for the usual methetrexate infusion and flush out. Hopefully all will go without incident. All prayers, as usual, are totally welcome!!!!!

Will report about the weekend next week.

Sunday, May 06, 2001 at 03:38 PM (CDT)

Jackie is still doing well and her smile doesn't get any less engaging as the days pass!!!!

Today the Tri Deltas from Southeast Missouri State University held a golf tournament for three families with children with ALL. Approximately 40 golfers happily participated in the tournament even though it had to be called off early because of rain. Bent Creek invited everyone back for another day.

We feel fortunate that so many people cared to help Jackie and the other children. Thanks to all the Tri Deltas, their families, friends, and Bent Creek. We were very touched that people we didn't even know wanted to help.

It was also a comfort to meet families who are dealing with issues similar to ours.

A special thanks for organizing this event to Amanda Davis, Sarah Torretta and Pam Arbeiter and all the Tri Deltas.

Tuesday,May 01, 2001 at 06:34 PM (CDT)

Jackie had a some difficult days after her last chemo treatment. She didn't eat much for most of the week and didn't want to drink either. A friend of Dede's who has had chemotherapy said that everything tastes like chemo for a number of days after the treatment - especially sweet things and eggs. We tried everything we could think of to keep her going. She would eat popcorn - so that was her snack for a few days. She is her usual "eating" self as of yesterday. So we have weathered another storm.

We all went swimming at Aunt Missy's house on Sunday. Jackie loved the water - even though it was too cold for some of the adults. It was not too cold for Nana who had to get in and play with the kids!!!

Physical therapy yesterday was fantastic. Jackie wants to walk again. She was doing so well before she got sick - and is now working hard again. She showed off for everyone at the Center - was really proud of herself.

Her blood levels appear to be holding because she has energy and her color is good. She will have her blood tested again on May 11 when she goes for her next three day stay in the hospital.

We appreciate everyone's continued prayers and support.

Tuesday, April 24, 2001 at 07:08 PM (CDT)

We took our sweet Jackie to St. Louis on Friday. She spent last weekend at Cardinal Glennon for a 24 hour infusion of methetrexate and a 24 hour infusion of the antidote to flush out the methetrexate left in her system. She is tolerating people "messing" with her better each time we go back. We did have a few tense minutes when she was put to sleep for her spinal tap and to have her teeth examined by her dentist, Dr. Jines. She had an allergic reaction to the "sleep" medicine. She developed a rash and her breathing was labored. Dr. Gale assured us that it was not serious and after a couple of injections to stabilize her, she was just fine.

After that the time in the hospital was uneventful. Paul arrived on Friday afternoon to stay with Dede and Jackie - and I came home.

Yesterday and today she has felt somewhat "puny". She doesn't want to eat or drink much for two or three days after her infusion - but between Dede and Nana cajoling her into drinking a sip here and there we have managed to keep her from becoming dehydrated.

She is really an angel. She has undergone so much, yet she smiles and enjoys life to the fullest in between her trips to St. Louis. Her blood levels are staying quite stable and the doctor is very optimistic about her remission.

We don't have to go back for another infusion for three weeks. I will give you a short update each week until that time.

Tuesday, April 17, 2001 at 09:11 AM (CDT)

Jackie is back in her various therapies - full steam ahead. She went through a month of chemo beginning February 17th that weakened her and cut her immune system down to almost nothing. She now has much of her strength back and is her happy-go-lucky self again. Her immune system is such that she does not have to be isolated from family any longer. We had a wonderful Easter celebration!!! We go to St. Louis on Friday for another treatment in this second phase of chemotherapy. Will update next week.

Monday, April 16, 2001 at 10:24 AM (CDT)

To all our family and friends. Thank you for your continuing prayers and support. Without them, this journey would be a very lonely one.

As you all know Jackie was diagnosed with leukemia in February. She has undergone extensive chemotherapy and is now in remission. She continues to go to Cardinal Glennon Children's Hospital once a week for treatments. I will keep you updated after every visit.

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