History

Journal History

Saturday, December 26, 2009 9:13 PM CST

Happy belated Christmas to all! Things are going well here. The girls are excited to be on Christmas break. Don and I took off the week too. We really don't have huge plans.
We want to wish you all a happy, healthy New Year! I pray that 2010 will be a wonderful year. Sarah has her scans on the 4th of January. This will mark her 5th year of remission. Please continue to pray for her. God bless and happy holidays!
Jackie

Thursday, October 15, 2009 11:03 AM CDT

TODAY SARAH IS 13 YEARS OLD!!!
HAPPY BIRTHDAY SARAH, MAY GOD CONTINUE TO BLESS YOU WITH GOOD HEALTH AND REMAIN CANCER FREE. WE LOVE YOU!!!!

Monday, September 7, 2009 2:28 AM CDT

The first week of 7th grade went well. Sarah was glad to be back and see her friends. Summer went by too fast for me. We did manage to take a family trip to Washington DC and Virginia Beach. It was very relaxing.

Since this is Labor Day Weekend, we are trying to pack in some last minute fun. Yesturday we went to the Walworth Co. fair and tonight we went to the outdoor theater. It is always a good time.

As you can see, Sarah is doing well. I am so very thankful and I appreciate the ability to have a "normal" family life. Thank you for continuing to pray for Sarah.

I have to update the pictures. These are a couple of years old already! God bless!

Tuesday, July 7, 2009 7:59 PM CDT

SCANS ARE CLEAR!! Thank God! Sarah has made it 4 1/2 years remission. Her transplant Dr. said today that if we wanted to stop coming in for CT's, this could be our last one. I said no, we will do the last one in January 2010, her 5 year mark. Dr. Desantes also said that the first couple years after transplant is crucial. I asked about percents today. I normally don't but I today I just did. He said that she is below a 5hance that neuroblastoma will come back. WOW! I am so thankful and appreciative. I also am guarded. I know that things can happen. She has used chemotherapy and had radiation. Things may cause bumps in the road again; secondary cancer due to chemo, not growing, not able to have children, organ complications... But we are seeing other specialists to make sure these things are in check. And so far, things are going great. So thank you all for your prayers. Thank you for checking on Sarah, we appreciate it!
Jackie

Thursday, July 2, 2009 9:57 PM CDT

Hi everyone,
Things are going pretty well here. I noticed it has been awhile since I last updated. But no news is good news. Sarah and Catie finished 6th and 5th grade very well. Catie is looking forward to going to Middle School this fall.
We are off to UW on Tuesday the 7th for the CT scan and Dr. appt. Please pray that all is clear. Thank you for checking in with Sarah.
Have a great 4th of July weekend!
Jackie

Tuesday, January 13, 2009 5:31 PM CST

WHOO WHOO!! All scans are clear and she is cancer free! This marked her 4th year post transplant. The day started rough with trying to get an IV started. It took 7 times to get it and 3 hours of enduring fear that they wouldn't be able to get it. As it turned out, the IV would only flush and would not give us a blood return so she had to get a butterfly poke to draw blood for labs. BUT, she can handle this especially with such great CT news. We saw her transplant Dr. and he said that this July she will have a scan and then her last scan will be January 2010. This will be her 5 year anniversary since transplant and the chances of neuroblastoma coming back is drastically reduced. He actually said the first two years after transplant was the most crucial for recurrance. So she is well beyond that:0 Thank God!! Thank you for your prayers and thoughts for Sarah.

Thursday, January 1, 2009 3:02 PM CST

Sarah is due for her scans on January 13th. Please pray that all are clear and that she remains cancer free. Thank you for your support and prayers!

Thursday, January 1, 2009 3:02 PM CST

It is with great saddness that I write. Our friend, Emily, earned her wings today. God bless the Kapke family.

Friday, December 5, 2008 11:14 PM CST

Please pray for Emily Kapke. She is a girl that battled cancer when Sarah was 1st diagnosed. Her cancer had come back this summer and she undergone a transplant. She is having a hard time right now and needs prayers. She is a beautiful girl with a loving family. Please visit her website at www.caringbridge.oeg/wi/emilyk

Saturday, November 1, 2008 9:22 AM CDT

Happy November 1st!

Six years ago today, Sarah was first diagnosed with neuroblastoma. It is a day that I will never forget. To say that it has changed our lives is an understatement. The second round of cancer was diagnosed the 27th of October, 2004. I do get a little anxious around this time of the year. More because a lot of memories overflow my mind. I am THANKFUL that Sarah is well and here with us! I thank god everyday.

Six years ago was horrible, terrifing and unimaginable. Where are we today... Sarah is in 6th grade, made the honor roll, enjoys playing the violin, talking on the phone, playing on the computer, babysitting and right now she is playing barbies with her sister, Catie. Life couldn't be so wonderful!
Thank you all for your continued prayers and thoughts.
Jackie

Monday, August 18, 2008 1:30 PM CDT

Things have been going well and we are very thankful for that. The girls are getting ready for school, we start after Labor Day. I start school the 25th of August so I am a little sad that they get one more week! (hee, hee) Catie will be in 5th grade and Sarah will start Middle School. This means a new school for her. She is excited and ready to go back. I can't believe middle school. There was a time I didn't think she would be here for middle school. This is such a huge milestone for us. (Maybe more for me) I truly thank God and for all your prayers over the years. Please continue to pray for Sarah and for all the children that have and are going through cancer.
Enjoy the rest of summer! Bless you all, Jackie

Thursday, July 24, 2008 11:39 AM CDT

Please pray for the Hoffman family. Their daughter, Elizabeth, passed away last night. She battled Ewing Scarcoma cancer for 3 years. She was just 6 years old. Her website is on the bottom of the page.

Tuesday, July 8, 2008 8:11 PM CDT

Today Sarah had her 6 month scans and all is well!! The day was long but well worth it. We are all tired and emotional drained. But I wanted to thank you all for your prayers. We are due back Jan.09 for her 4 year check up!
Thanks, Jackie

Wednesday, June 25, 2008 8:31 AM CDT

Yesturday Sarah had an appt. with her renal Dr. It was her 6 month check up. Her 24 hour urine had some protein in it, which means we have to do another sample in August to see if it is going up or down. If it is going up, she will have to increase her blood pressure medicine. She is on 2.5mg a day to help save her kidney function. Otherwise, things looked good. The Dr. said that her cysts have not changed size, which is a good thing. We have to continue to monitor her diet with salt intake, etc. The good thing is that she does not overdue the salt normally.

She is to go back to UW on the 8th of July for her 6 month check up with oncology. She will have her CT scan then. Please pray that she is cancer free. As always I get a little anxious at this time.
Please continue to pray for our friend Ben and Elizabeth. Their websites are at the bottom of the page. Thank you for checking in and for all your prayers.
Jackie

Saturday, June 14, 2008 9:54 AM CDT

PLEASE PRAY FOR OUR FRIEND BEN. HIS CARINGBRIDGE SITE IS
WWW.CARINGBRIDGE.ORG/WI/BENJAMIN. HIS LINK IS ON THE BOTTOM OF OUR PAGE. HIS CANCER IS BACK AND HE IS NOW IN RENAL FAILURE. WE KNOW MIRACLES DO HAPPEN AND PRAYERS WORK! THANK YOU

Saturday, March 8, 2008 8:02 AM CST

Things have been going well. I spoke to the bone Dr. and the bone scan looked good. No damage to the blood flow. Thank goodness! I still have not heard from the kidney Dr. himself about the missing kidney stone. As always, no news is good news in this field. The endocrine Dr. was suppposed to be sending me a letter of the results of lab work from January. I guess she is still working on it. I have spoke to her nurse twice. There was nothing "wrong" with the results. I like to receive some sort of comfirmation from the Dr. I am so used to working with one speciality, oncology. I knew their system. Now I am working with three other specialities. I haven't figured out their system.

Sarah is doing well in her wheelchair and walker. She feels like she can walk but knows she can't yet. We really need that leg to heal. She has an orchestra concert coming up. She is excited about that. Also spring break is around the corner and we are all ready for that! My spring break is a week earlier than the girls. That figures. Nursing school has been BUSY. It is a fast pace. I have been out of school for awhile. It has been an adjustment for the whole family. If all continues to go well, I will graduate in December and then I will take my board exam. I will then be a LPN. I am excited. I start clinicals in April. Catie is doing well in school. She likes her teacher a lot. Don has been bust at work. He is taking a class over the computer. He is going to be teaching boat safety school again this month. Knock on wood, all is calm here. Tomorrow is daylight savings time and the days will be brighter, spring is around the corner!
Thank you for checking in on Sarah. Thank you for your prayers.
Jackie

Tuesday, February 26, 2008 1:54 PM CST

Yesturday Sarah had a bone scan to detect the blood flow in her legs from her surgery. Too little blood flow would cause the bone to die. We are still waiting to hear from that result. She also had a Ct of her left kidney to follow up a possible kidney stone. The CT showed no evidence of a kidney stone or anything else new! Her cysts are stable from her polycistic disease. This report came from the nurse. I was in shock, I asked if she was sure? If it wasn't a stone could it be cancer? She informed me that it wasn't cancer because nothing showed up on the Ct which is more accurate than an ultrasound. Nothing glowed on the CT. She said it could have been a stone and it had passed by itself or what the ultrasound found was actually a shadow from a cyst from the polycistic kidney disease. Needless to say, we are extremely happy and relieved! Thank God for another miracle!!
I will post again when I receive the other Dr. reports from the bone scan and endocrine. Thank you for your prayers!!
Jackie

Sunday, February 17, 2008 8:02 AM CST

Sarah has been doing well. Over the past week she has come a long way. She will use her wheelchair at school and her walker at home. She has to keep her left leg off the ground so she actually hops. The kids at school have been very supportive along with the staff. I appreciate this very much. I have seen her teacher push her in the hallways, hug the corners, see how fast they can go, etc. She loves it! Her principal even had to give it a try and give her a wheelie. It must be a man thing, because her dad does this to. Anyway, things are feeling more calm. She is to go to the hospital on Wednesday for a bone scan to see how the blood supply in her leg is. Then on Monday the 25th we see the Dr. to talk about the future.
We appreciate your prayers and ask to please continue to pray for her healing and of course, no more cancer. Thank you, Jackie

Wednesday, February 6, 2008 1:09 PM CST

Sarah is doing better. The surgery was a success. She has been going through physical therapy to learn how to use a wheelchair and a walker. Today she is finally in good spirits. I took her down to wash her hair and wash her up and that does wonders. We could be discharged today but because of the snow storm, we are staying one more night. Maybe tonight we will try to go home if the weather cooperates. I am doing laundry now as Don and Catie are sitting with hospital gowns on in our room. We are all anxious to get home and get settled.
I am so very impressed with the pediatric orthopedic dept. here. We had Dr. McArthey and he is just wonderful. He takes his time and answers questions. He stops in often to check in on Sarah. It has been a pleasant experience for all that Sarah has gone through.
Thank you for all your prayers. Again, we feel blessed.
Jackie

Monday, February 4, 2008 8:00 PM CST

well, here we are at the children's hospital. Sarah is in surgery as I type. Due to her past chemo and radiation, Sarah has a slipped capital femoral epipysis. Basicaly, the growth plate in her left thigh has slipped. She is in A LOT of pain! We were brought in and admitted with surgery to happen tomorrow but to our luck it is happening now. She is going to have both of her growth plates pinned in each leg. She will have to stay off her left leg for about 3-4 months so we are looking at wheelchair and crutches. I will know more about that tomorrow. Please keep her in your prayers, thanks.

Tuesday, January 8, 2008 4:19 PM CST

ALL SCANS ARE CLEAR!! This is Sarah's 3rd year out since her bone marrow transplant. What a wonderful accomplishment. We are all tired from today but feel very, very blessed. Thank you for all your prayers and support. We appreciate everything.
Jackie

Tuesday, January 8, 2008 4:19 PM CST

Tuesday, December 11, 2007 1:31 PM CST

Hi everyone! Things are going good here. Today is Catie's 10th birthday and a snow day from school! She said this is her best birthday ever! The girls and I decorated Christmas cookies and now they are outside playing. Buddy, the dog, is going crazy. He wants to be with them so bad. But he is still a pup and would not stay in our yard.

Sarah is feeling good. The girls have their Christmas concert this Thursday. Then Sarah has her orchestra concert on Monday. She plays the violin. She has to have her 6 month check up January 8th. Please keep her in your prayers as well as the many other children battling disease. Merry Christmas and Happy new Year!!

Tuesday, December 11, 2007 1:31 PM CST

Monday, October 15, 2007 8:33 AM CDT

Today is Sarah's 11th birthday!! Every birthday means so much. I reflect the past years and the fears that we thought she might not be here. Having her here is truly a blessing. Keeping our family together and watching my daughters grow up together is priceless. I will never take a birthday for granted. I remember the day Sarah was born. When the nurse said she was 7lb. 11oz. and 21 in. Don said, "We are sure lucky with those numbers!" He was definitely right. Then Catie came with 7lb. 11oz. and 19in. Still, we are pretty lucky to have two wonderful girls.

HAPPY BIRTHDAY SARAH! MAY ALL YOUR DREAMS COME TRUE! MINE ALREADY HAVE:)
LOVE, MOM

Tuesday, July 10, 2007 10:30 PM CDT

ALL SCANS CLEAR!!! We are so THANKFUL! Sarah is scheduled to go back to the hospital Jan.8th, 2008 for her next oncology appt. I am walking on air right now. I feel blessed.

Thursday, July 5, 2007 9:50 AM CDT

Hope you all had a nice 4th of July! Summer is sure flying by. Things are going well here. Sarah is due for her 6th month check up on July 10th. We are, of course, praying for great results and for her to still be cancer free. Please keep her in your prayers. Thank you for checking in on Sarah, we appreciate it very much.

Monday, May 28, 2007 3:30 PM CDT

Happy Memorial Day!
We had a great weekend starting off the summer. Friday night we went to the outdoor theater to see Shrek 3. We went with my brother and his family. It was fun. Sarah has been feeling good and is excited for school to end. I can't believe she will be a 5th grader in the fall. I thank God everyday for her and allowing her to be with us. Catie of course too:)

Please keep Sarah in your prayers. I just believe in the power of prayer. Thank you and have a great start to summer!

Tuesday, May 8, 2007 9:41 AM CDT

Wow, it is May already. Things are going well here. Everyday I am thankful and praising God. We are excited about school starting to end and for summer fun to start! We really do not have a lot planned for the summer, just relaxing and being together. We are planning our Relay for Life event. The girls had a bake sale over the weekend and raised $183! Not bad for a bake sale.
Some exciting news...on March 3rd we bought a miniature schnauzer puppy named Buddy! The girls (and Don)have wanted a dog forever and I finally gave in. He is adorable.
We want to thank you all for continuing to read up on Sarah and pray for her. New pictures are coming...
love, Jackie

Tuesday, February 27, 2007 5:57 PM CST

Howdy,
Today Sarah had an echo test, which is done yearly just to check the heart to see if there are any side effects from chemo. We haven't heard about the results but I feel okay. Then her Dr. met with us to say that they want to see Sarah every SIX MONTHS instead of every 3. I felt a little nervous but the Dr. said," think of this as a graduation, a good thing." I do feel blessed, overjoyed and so very thankful. So, our next appointment for oncology is July 10th! WOW!
Thank you all so much for your prayers!!!
Jackie

Thursday, February 8, 2007 11:42 AM CST

Hi all,
Today is Sarah's 2 year anniversary of her stem cell transplant. It is such a wonderful blessing. Our hope was to go away for the weekend with family. Sarah has a cold with a cough, so we are waiting to see how she does. Thank you for checking up on her and for your prayers. Prayer works!!
Jackie

Friday, January 26, 2007 3:17 PM CST

Hello, we just got back from UW and all is WELL! Scans came back clear, YEAH!! Thank you to all for your prayers and support. We appreciate your prayers!
Love, Jackie

Thursday, January 25, 2007 7:03 PM CST

Hi everyone, tomorrow we are going to UW for Sarah's CT scan and labs. We moved it up a week. Please, Please, pray that all is clear. Thank you, Jackie

Saturday, January 20, 2007 8:35 PM CST

Hi everyone, Hope all is going well. Things here seem to be pretty normal. The girls went sledding today and they are looking forward to maybe getting some snow tomorrow. The fresh air has pooped them out and Sarah is asleep already tonight:)

Sarah is going to Madison on Feb.6th for her 2 year check up. This will be her usual scan and lab work. Please pray for Sarah. Please pray that she is still in remission and cancer free. I know the power of prayer works and I am asking all you prayer warriors to help out. Thank you so much. Please keep all the children fighting this disease in your prayers.
Thank you again, Jackie

Saturday, January 20, 2007 8:35 PM CST

Monday, January 1, 2007 0:13 AM CST

HAPPY NEW YEAR!!!!
We would like to thank you all for your continued prayers and support for Sarah. We pray that 2007 will be a healthy year, free of cancer. We celebrated tonight with our usual tradition...being together, watching the ball drop, playing board games and reflecting on 2006. Although this year was a new tradition, we watched the Packer game and the disney channel. As long as we are together, I didn't care:)

We hope you all have a happy, healthy 2007! And again, thank you for keeping Sarah in your prayers and hearts.
Jackie

Saturday, December 2, 2006 9:27 AM CST

Things have been going well. We celebrated Thanksgiving at the Kalahari Resort in the Wi Dells. My mom came up with us. My brother and his family were supposed to but his children were sick. Thankfully they are feeling better now. Yesturday we had a snow day from school. I think we have about 7 inches of snow dumped on us. The girls and I went outside to get some fresh air and they played in the snow. We came back in to make chocolate chip cookies. We had a great day! I think I love snow days just as much as the kids! Today we are going to see Happy Feet the movie. Next week is Catie's birthday, she will be 9 years old. The time sure flies by fast.

We are all looking forward to Christmas and celebrating the holidays together. We are so thankful for our many blessings; good health, family and friends. We wish you all a Merry Christmas and a Happy, Healthy New Year! Thank you for your continued support and prayers for Sarah.
love, Jackie

Friday, October 27, 2006 7:21 PM CDT

PRAISE GOD!!!!

Today, we went to the Dr. to have Sarah's CT scan. And everything is ok, no evidence of disease. Thank you God! Sarah is good to go until our next check-up in February. Which will be her two year post transplant anniversary.:) I am so relieved right now. This weekend is the anniversary date of her relapse. I am thankful to put that date behind us this year. I feel so blessed!

Thank you to all for your continued prayers and thoughts for Sarah. We truly appreciate it!
love, Jackie

Thursday, October 26, 2006 12:10 AM CDT

Hi all,
I am writing to ask for prayers. There is no real serious symptoms. This time of the year is Sarah's anniversary date(s) of her diagnoses. I always get scared. The memories never go away, they haven't lessen. Then, to top it off, she says she has a side ache today. It is not real painful but it is there. I am worried, of course. I called the Dr. to see if we could come in and get the ct done early but they said no, there were no empty time slots down in the ct. Yeah right. We are to wait until tomorrow to see if there is a change and then take it from there. So until then I will be a basket case, yeah!!

Please, please pray for Sarah

Saturday, October 14, 2006 10:20 PM CDT

Hi all, tomorrow will be Sarah's 10th birthday!!! I can remember the day she was born like it was yesturday. She was actually born at 12:58 am so ten years ago at this time I was in labor. :)

I am so extremely happy that we can celebrate tomorrow. Everyday is a blessing that I do not take for granted. I thank God that we are all together and healthy.

HAPPY BIRTHDAY SARAH, I LOVE YOU TO THE MOON AND BACK!!

Monday, September 4, 2006 9:52 PM CDT

We are settled in, as this is the night before school starts. Sarah is very excited and can't fall asleep. She did this last year too. I am working on last minute laundry so I sent Don in to lay down with her. Maybe she will fall asleep, soon. The backpacks are ready and the lunches are made ready to go. The girls have their new outfits picked out for tomorrow. I can remember being excited and acting the same way for school to start. Sarah came out to the kitchen one last time tonight to ask me to tuck her back in and she had some questions for me. What she was about to ask, made me sad. She asked, "What if I get cancer this year?" "Ya know, It is an even year (4th grade) and I had cancer in K and 2nd." I tried to explain that I don't know what life has for any of us. That their is no reason that cancer should come back. We have to live each day and enjoy each day. I asked if she felt better and she said yes. But it is the idea that my 9 year old has to worry or even think about such a horrific topic, especially as she is excited for the first day of school. How many kids think of such huge, scarey concepts? All kids should be thinking about is who am I going to sit by, play with tomorrow, what homework I will get. Not, gee do you think the cancer will come back because it is an even year and that is the way it has worked in the past. I am sad for Sarah and angry at the disease. It makes me scared because I too have thought this idea. Even though I know rationally there is no reason for it to come back, especially this year. It just crosses my mind. I am angry that it crosses my mind. Living in fear... there are days it is easier but the truth is, I think I will always be afraid. I just keep praying.

Please continue to pray for Sarah and of course all the other children fighting and living with this.
Jackie

Tuesday, August 8, 2006 3:21 PM CDT

We just got back home from Madison and Sarah is still cancer free!!!!!!!!!! Thank you all for your prayers:)

We went to Madison last night to stay at a hotel for fun. Then we were off to the hospital by 7am to start an IV. The IV went well and the ct scan went well. We waited about 2 hours to hear the results (which killed me) but I do really appreciate the Dr.s letting us know the results today. We visited some nurses and went down to radiology to see our friends there. For UW being so big, we really feel there is a great group of people that took care of all of us. The girls fell asleep riding home and I am exhausted! Emotionally tired:) The time I sat waiting for the news of the ct scan, all I could think of was the future plans we have and how in any minute, it could all change, again. Sarah already knows what she wants to be for Halloween, she has her birthday/Christmas list started, she has all of her school supplies ready to go. It is remarkable how this whole experience has put life into perspective. Life is short and there is so much to do:)

Oh yeah, we saw her Renal Dr. and all is stable with her kidneys. She doesn't have to be seen again for a year. She will be monitored with labs and urine collections but that's nothing:)

So, again, thank you for your prayers and your continued support for Sarah. God bless you all, Jackie

Thursday, July 27, 2006 7:46 AM CDT

Hi everyone,
Things here have been going well. We are gearing up for a hot weekend! Last weekend at Relay went good. We had a wonderful time, as always. The weather cooperated with us and that helped. The survivor lap was emotional. This year we had pins to pin on Sarah and then she inturn pinned me with a caregiver pin. She said," I give you this pin....and then she had to fill in the rest. So, she said, "I give you this pin because I love you and you take care of me." I couldn't stop crying. Then I pinned her with her survivor pin and said,"I give you this pin because I love you and I would do anything for you. You are my hero."
The luminaria ceremony was very nice too. This year they had a slide show of pictures of survivors and those that have passed, flashing up on the screen.
Oh,and our campsite placed 3rd in decorating! We had a hot air balloon made out of chicken wire and kleenex. That was fun! And our team won 1st place in the Amazing Race contest that won us a digital camera! We will auction that off for next year's event.
The postcards were displayed in a book and set on our table near the track were people walked and could stop by and look. I met a few people that had sent cards and wished Sarah well. That was wonderful.
It was just a very nice celebration of life last weekend with family and friends. Remembering our friends that have earned their wings, and those that are still struggling.

Sarah is to go back to UW on Aug.8th for her routine Ct and lab work. She is also going to see the renal Dr. for her 6 month check up. Please, please keep praying for clean scans and that all is well. Thank you so much.

Enjoy life, Jackie

Saturday, July 1, 2006 5:12 PM CDT

Happy July everyone!!

We just got back from our trip to Oklahoma. We had a nice time visiting family. It was a little touch and go if we would be able to actually go because Sarah had a virus. She had a fever (for 3 days) and felt crummy. We did every test and it came out that she had a sinus infection. So we put her on an antibiotic and away we left. After we visited for a few days, we took the girls over to Oklahoma city and saw the National memorial. It was beautiful. Then we went to Branson, Missouri. That was a lot of fun. On our way home we stopped off at the St. Louis arch and took a ride. We had a horse carridge ride by the river to top off our trip. It was peaceful:) A nice start to summer.

We are fired up and ready to get going on Relay!! The postcards are still coming in and we THANK YOU ALL for helping us out. The kind words for Sarah are precious. We were going to hang them somehow at our campsite but because we received so many and the kind words (many from complete strangers) we want to save them. So, we put them in an album that can be seen and read by the people walking the track at Relay.

Thank you for your thoughts and prayers!! Keep them coming...:)
Jackie

Tuesday, May 16, 2006 6:21 PM CDT

Hello all,
Things are going well. We had a break in the rain, so the girls are outside playing. School is coming to an end. We are out June 9th. We are all ready to be done and enjoy the summer. We have planned a trip to Oklahoma to visit relatives in June. The girls are excited, thinking that people down there wear cowboy outfits and ride horses all day. So, they want to get cowboy boots and a cowgirl outfit before we go. I did call my Aunt to let her know that is how the girls preceive Oklahoma. She had a good laugh and said we can all go to a rodeo!

Please keep our friend, Ben, in your prayers. He started his chemo this week. He is doing well and we hope it continues. Sarah had the same type of chemo and did fine, so we hope Ben has the same luck!! Also, please keep Emma's family in your prayers. Otherwise, it sounds like all of our other friends are doing fine, and we hope this continues. Thank you so much for your thoughts and prayers. We are so appreciative of you all.
Have a great Memorial Day weekend (the nice start to summer)
love, Jackie

Saturday, May 13, 2006 8:34 PM CDT

Hi,
The radiothon raised $512,000! Last year was $400,000. Thank you Connie and Fish.:)

Don and I were at our friend's daughter, Emma, visitation. My heart is so broken for them. Emma was a true miracle and blessing. Her family loved her so much, it was very aparent. Emma had AML leukemia back in 2003. She underwent years of ups and downs. She was a strong, little fighter. (Emma did not pass away because of cancer)You can check out her website at the bottom of our page.

Please, hug your children, count to 10 before you yell, snuggle together and tell your child why you love them. Be thankful!!!

HAPPY MOTHER'S DAY!!!
Jackie

Wednesday, May 10, 2006 5:31 PM CDT

Praise God, everything is fine!! The scan came back clear. We had a fun time talking on the radio today to help raise money for the hospital. I will post more later, but I have to go to a relay meeting...

On a Very sad note, our dear friend, Emma, has passed away yesturday. She had RSV and her lungs just couldn't take it anymore. God bless Emma...you were a true miracle!
Love, Jackie

Thursday, April 27, 2006 1:28 PM CDT

Hi all,
Things are going well. Sarah is enjoying school and the warmer weather. Which reminds me to change the pictures on the site:) We had a great Easter and a nice time away together for Spring break. The girls and I are getting ready for school to end and enjoy the summer. We don't have any huge plans. We would like to camp more this summer.
I am writing to plead with all of you, once again:) May 10th is Sarah's 3 month check-up....I am doing okay. At times (when I am not busy) my mind will wonder and anxiety will creep in. I am asking for your prayers and thoughts for Sarah to still be clear of disease. I do believe in the power of prayers so I am starting my requests early, to get many of them. Thank you everyone for your help. It really does ease my mind.
love, Jackie

p.s. Sarah has 75 postcards for Relay!! We still have until July....

Sunday, April 9, 2006 8:20 AM CDT

Hi all,
I am writing to ask for your prayers!!! Our dear friend, Ben, has relapsed. This will be his 4th battle with wilms cancer. Ben is a fighter and is once again ready to confront the challenges that lie ahead. He has a sister, Hannah, who is 10. Please remember her as well as this beast affects the whole family. Thank you for your help!!

Things here are going fine. We are leaving today for a couple day get away. This is our Spring Break and we are ready for some R&R:) (who isn't?) We are having Easter here and the girls are excited for family to come over. They want an egg hunt. We wish you all a blessed Easter and thank you all for your prayers and support.
Love, Jackie

BEN'S WEBSITE IS AT THE BOTTOM OF THE SCREEN

Wednesday, March 29, 2006 6:59 AM CST

Good morning!
Happy Spring:)

Life at the Hunter house is going well. Sarah is doing fine and enjoying life. We are so thankful. School has been going good, the girls are ready for Spring Break. Don, Catie and I have had colds and a terrible cough. Somehow, Sarah has been our HEALTHY one and has escaped the illness. She goes tonight to receive her second set of immunization shots or baby shots. The girls are excited for Easter and our egg hunt. We are also getting prepared for Catie's First Communion this May.

So, I am happy to write that all is well. I know so many people are still praying and keeping Sarah in your thoughts. I am so grateful.

Enjoy Life, Jackie

Sunday, February 19, 2006 10:56 AM CST

Things are going well. The girls start swimming lessons today. We are planning a winter get away for the weekend with my brother and his family. It will feel good to relax:) Thank you for your prayers!
Jackie

Please keep the postcards coming...

Thursday, February 16, 2006 8:22 AM CST

Good morning! Another snowday here today:) The girls are watching cartoons and still in their pj's.

Sarah is doing fine. We are still floating on air with the news from the Dr. last week. Although, I must say that I have had a hard time with coming to grips with this disease and what it has done to us the past 3 years. Please bear with me while I vent:)
I have been asked many times, "How do you manage?" "You are so strong." My answer has always been, I have no other choice. I am thankful for my faith, strong marriage and good support from family and friends. But as things are leveling off, I am having a hard time going on. I should be able to go with the flow and move on with our new normalcy. Why, am I remembering all the horrific things we (Sarah) has just gone through? I keep telling myself to, get over it, it is in the past. But I am paralized at times with fear that our life will fall apart again if I let go.

When Sarah is having a good day; feeling well and happy, then I am fine. But as soon as she says her tummy hurts, her knees hurt, etc. I panic, literally. I ask her 100 times, how she is doing, what is her pain level...it drives her nuts as well as myself. But I am waiting for her to say, the pain is gone, so I can breathe, move. She just had her CT scan and everything looked fine, yet yesturday she woke up and said her side hurt. She said the pain was a 1 or 2 on a level of 1-5, 5 really hurting. I paniced. I worried all day. I asked her many times at school how she was doing. I had myself believing terrible thoughts. I was crying in my classroom. I then decided to call Madison and speak with our nurse. She read the offical ct report to me again and tried to reasure me. She asked if Sarah had been playing in gym? And I said yes, they are doing tumbling. It is possible she pulled or used a muscle. I know it sounds logical but for me I still was fearful. I couldn't think logically.

For me, I am doing all I have to, to live and go on day to day for my family. I have a hard time thinking long way out. I have put myself on hold for 3 years that I feel like I can't or don't know how to let go. Yesturday was an eye opener for me. It is time I get help and live life for what it really is. I can't live in fear, it is eating me up. I should have gone for help 3 years ago when this all happened. But hey, I am mom. I hold the family together. I can't be weak.

Today when Sarah woke up, I asked her how her side was. She said, fine, all better and skipped down the hall to play Barbies with Catie. So, I guess today is going to be a good day...

Thanks for letting me vent. Thank you for your prayers.
Jackie

Wednesday, February 8, 2006 8:12 PM CST

One year ago today, Sarah had her stem cell transplant, her second chance at life.

We went to the hospital for tests and scans as part of routine for Sarah. It was a highly emotional day, as we remember where we were a year ago, where we are today, and those who have earned their wings in this nasty battle. "Life is precious and can not be taken for granted." I think that is what I have learned through Sarah and cancer. I have always heard this saying, but it wasn't until we lived it, that I fully understand it.

Sarah had her CT scan early this morning and as she laid there with her prayer blanket wrapped over her, I quickly tied another knot to pray for clean scans:) I held her hand and had to remind myself to breathe. I asked for Dr. Foster, if he could come in and let me know how things looked. He is wonderful, that he finds time to come in and see us parents. He came in and said that all looked good!! He had to fine tooth comb the scan further, but nothing popped out or looked out of the ordinary. He said that he would see us in three months:) Tears of joy!!!! Sarah had a hearing test and that didn't show any changes since last year. Then she had an echocardiogram. I haven't heard the results but I don't anticipate any problems. At the time we were to see our Dr., Sarah had enough. She was tired and anxious to go home. Because it is UW hospital, it is a teaching hospital, we had a medical student ask questions and do an evaluation. Then the nurse practioner came in to do an exam. All Sarah wanted to do was go play in the waiting room with Catie and the child life workers. Our transplant Dr. wanted to come in and say Hi. Sarah was not up to small talk. She asked if she was done, and he said sure. So, she jumped off the table and said Bye, see ya later! Our Dr. said we were done with transplant clinic! That we can go back to be seen with our regular cancer Dr. He let us go as Sarah had made her first milestone!

So, we go back May 10th for a Ct scan and see our ole Dr. Joe. Today was a huge milestone for Sarah and for us as a family. I am filled with happiness, relief and gladness. It is such an overwhelming mix of emotions. I can't quite find the words to explain how this journey has changed me (us) and how lucky we are.

I know, I am rambling again.:) Chalk some of it off to lack of sleep and worry to relief and exhaustion:) Thanks for your prayers, support and love!
Jackie

Monday, January 30, 2006 8:30 PM CST

Hi all,
Things are going okay. Sarah had a terrible cough and congestion. I took her to our local Dr. and he said all sounds okay. A couple of days later, she still sounded terrible. I took her back and had a sinus and chest x-ray done. It turns out her sinuses were very inflamed. She was put on an antibiotic. She is feeling better and back at school. My mom came down and stayed with us for a few days to take care of Sarah so Don and I could still go into work. Sarah thought it was pretty special to have Grandma here. Catie had to take a "Grandma day" too! Sometimes it is hard to believe that Sarah can catch or come down with normal illnesses. It feels great to find out that she had the flu or sinus infection.

February 8th will be Sarah's one year post transplant anniversary. Oh my, how blessed we all feel. I can't describe my feelings of this past year. It reminds me of the scariest, largest roller coaster. There were days we laughed, screamed, cried and hung on for dear life. Sarah is a true blessing and a gift. I am so thankful for her and for Catie.

We are scheduled to go to Madison, on the 8th, for her ct scan, echo and audiogram. As of right now, I am feeling okay. I know as time gets closer I will feel anxious. I am asking all of you for your help with prayers. Please pray that all scans will look good and clean! Thank you all so much for your care and concern over the past year(s). I will write when we get the results:)
Thanks, Jackie

Thursday, January 12, 2006 3:34 PM CST

Don and Catie had the flu this past week. Then last night Sarah said her tummy hurt and she vomitted. It made her feel better, then the rest of the night she had diareah. I kept her home today from school. She feels fine and seems to be back to her ole self again. A lot of students are gone from school with the flu. I have to admitt, when Sarah said her tummy hurt, an instant panic came over me. Even knowing rationally that everyone has the flu, I thought the worst. Then I was angry at this disease for taking away the innocence of normal illnesses. I am thankful that Sarah only had the flu symptons. Boy, I never thought I would be thankful for the flu:) Overall, things are going well and I am truely thankful. I know how easy it is to take things for granteed.

We are also thankful for the postcards Sarahs receiving for Relay for Life. She has 22 of them. Thank you for checking in on Sarah and for continued prayers. She is going to UW for a renal check up on the 17th. We did get some good news...her 24 hour urine showed her protein to be in the NORMAL range. Thank God for normal:) Then she is to go for a 1 YEAR post transplant check up on Feb. 8th. Can you believe that it has been one year??!! She will have a CT scan, echo and audiogram. Please pray for clean scans. Thank you everyone!!
Jackie

Wednesday, December 28, 2005 8:38 AM CST

HAPPY NEW YEAR Everyone!!

Christmas was wonderful. We all had a nice time together. This week the girls and I have off from school. They have been playing with their toys. Today I have to collect Sarah's urine for 24 hours and drop it off tomorrow in Madison. It is for the urology department, to check the protein in her urine. While we are in Madison, we are planning to do some shopping. :)

As New Years approaches, we are so thankful for this past year. We are also excited for 2006. Praying for good health for all of us and our friends. Because family is so important to us, Saturday night will be spent together, playing games, having snacks, lighting off some fireworks and watching the ball drop. The girls want to sleepover in the living room. We stay up until midnight and then ring in the new year together, so thankful we are all here with eachother.

Hope you all have a blessed New Year with health and happiness!! Thank you for your prayers!

Thank you for sending the postcards! Keep 'em coming:)

Saturday, December 24, 2005 7:54 AM CST

MERRY CHRISTMAS AND HAPPY HOLIDAYS EVERYONE!!

The excitment around here is wonderful.:) The girls are so anxious about tonight and tomorrow. We are going to visit the Hunter side today and my side tomorrow. I have to admitt, I am a little excited too. I really believe we are all so appreciative of what we have. We are all thankful to be home together, feeling well, like the old days before the "C". I am soaking up the laughter, watching the girls play together, hearing them talk about important life things like; What do you want to be when you grow up? How they are going to go to college together and be roommates.

Thank you all for your countless prayers and all your concern for Sarah and our family. Merry Christmas everyone, bless you all!
Jackie

Don't forget, as you make your plans for a vacation, to please send a postcard to Sarah for her Relay for Life project. Thank you!!

Sunday, December 11, 2005 8:02 AM CST

Hi all,
Things are fine here. The other night Sarah had a terrible headache that woke her up at 4am. I gave her some tylenol and she was fine. But it had scared Catie. She started crying thinking Sarah had cancer again and she had to go to the hospital. It just goes to show you how this nasty disease has affected the whole family. It scares all of us.

The girls did an excellent job at their Christmas concert. Don and I looked like tourists with our cameras in the audience.:) As I watched the girls, I thought of when I was younger and singing at my Christmas concert and now I am watching my children! It doesn't seem like that long ago! I guess the years are flying by:)

This weekend we are celebrating Catie's 8th birthday. My little girl is really growing up. She has a wonderful sense of humor (like her mother:) and she is really a gift from God.

As Christmas and New Years approaches, it makes me think of how fortunate we are. I remember last years holiday like it was yesturday. Sarah and my mom at the same hospital being treated for cancer and the other with a brain anyurism. Over the last three years, our world has had some very difficult times, say the least. But through it all, we are still together as a family, able to count our blessings. Thankful to Him for countless miracles.

Have a wonderful Christmas and a happy, healthy 2006! Thank you for your prayers and concern for Sarah. Bless you all!
Jackie

Saturday, November 26, 2005 6:52 PM CST

Hi all,
What a wonderful Thanksgiving we had. I was so thankful that we were all together and not in the hospital:) Sarah is doing well. We decided to do something a little different for the holiday. My brother and his family, my mom and we, all went to the Wisconsin Dells and spent a couple of days at the Kalahari Resort. It was a lot of fun and there was no mess to clean up!

When we came home we went to the tree farm to cut down our Christmas tree. Every year I bring the video camera and make memories. I have video of the girls when they just learned to walk and they were tromping through the trees. They are just priceless. Last year, I remember feeling scared that it might be our last year for the four of us to pick out our tree. The future was so unsure. We knew Sarah was going to have her transplant and we just didn't know what to expect. I am so thankful and we all feel so blessed. It really brings tears to my eyes when I look back last year and see where we are now.

Thank you to everyone for sending postcards from all over to Sarah for Relay for life. She is having a great time reading them and she gets excited for the mail. Thank you Megan for your great cards from Europe, especially the Cinderella castle:) Please keep the cards coming...address at the bottom of the page.

This year, Don and I get to sit in the audience and listen to our girls sing at their holiday concert. Last year, Sarah and I were at the hospital. Sarah was sad and crying that she had to miss the concert. But this year, we get to listen to Catie sing a solo part and Sarah play a solo on the xylophone. And I will be in the audience crying like a baby:)

Thank you everyone for your countless prayers and thoughts for Sarah. Without your help, Sarah would not be where she is today. We thank you all so much.
Have a Wonderful Holiday Season!! Count your blessings:)
Jackie

Wednesday, November 16, 2005 5:31 PM CST

Thank goodness these past two days are over!!

Yesturday Sarah had her ultrasound of her kidneys. I was a little anxious. The technician couldn't say anything about the findings. The Dr. had her take some pictures of the gallbladder. She said it looked funny. Needless to say I was worried what she meant. I thought about every scenario imaginable. Today when we got to the hospital, I went to the renal clinic and asked to speak with the nurse about the report. She read it in front of me and said all looks fine. Her kidneys haven't changed. I asked her about the gallbladder. She said it just had a side note that the gallbladder was sitting funny near the kidney but that it looked fine, no stones or sludge. Yeah! One test down and all is well.

Then Sarah went to have her IV started. Now usually, actually most often, it is pure hell on all of us. Her veins are terrible and it takes a few tries, a lot of crying (by all of us). Today it went as smooth and easy as ever. There were tears of joy:) Then the CT scan...Sarah did well. Then the radiologist came to see me and said that all is still WELL!!!!!!!!!!!!!!!!!!!!!!!!!

Tears flowed like a river!!! Sarah brought her prayer blanket, given to her from the Congregational church from our town. She covered herself with it during the CT. Thank you for the prayer blanket Congregational Church and all the prayers:) Thank you to all of you for your prayers and thoughts for Sarah. I can not tell you how much they mean to us. I have to admitt, I am tired. It was a long day and the past couple of nights I didn't sleep real well. I am looking forward to going to sleep tonight:)

Thank you Denise and Tiffany for your excellent job today:) I just can't tell you all how thankful I am right now!! Life is good:)

Please, send any postcards to Sarah so she can decorate her Relay for Life campsite next year. The theme is passport to a cure. Thank you Vern R. for your card:)
Her address is on the bottom of the front page. Thank you everyone!!!!!
Jackie

Saturday, November 12, 2005 1:25 PM CST

Hi all,
Things have been going well. Next week, the 15th and 16th, Sarah will be at the hospital for scans. On the 15th she will go for an ultrasound of her kidneys and then on the 16th she will have her ct scan to make sure all is clear. I must admitt, I am getting anxious. I tell myself that she is not showing any signs of illness and she feels great. It is just a paralizing time. I will be so glad when it is over and we get the all clear sign! Our whole family will go with Sarah, as we usually do. We are there for support for each other. This time my mom is coming too. I am asking for all your help. Please pray for Sarah and that her scans are clear. I know with the power of prayers that all will be okay.:) Thank you everyone for your help. I will post when I hear the news.
Thanks, Jackie

Friday, October 28, 2005 10:58 PM CDT

Hi all,
Things are going well. Sarah is feeling good. We are on a four day weekend due to a teacher's convention. Last night I went to stay with my mom and have some time to myself. Don and the girls had a great time together going to a movie and spending time at the library. Today we went bowling and shopping with my brother and his family. It was a lot of fun. Sunday the girls are trick or treating. Sarah is going as a "good" witch and Catie is going as a Veternarian.

I couldn't help reflect today as we were bowling and laughing, having a fun time. A year ago today we found out that Sarah's CT scan showed...something. It was probably cancer. Sarah had a friend over for the night. I had to call her mom and ask her to come get her daughter. I was so upset and scared. It was the start of another nightmare. A fear that I never wanted Sarah or us experience again. This is the time of year that she was first diagnosed and then had her relapse. It is a nervous time remembering the past events. Going over the timeline of how things unfolded. It is a nightmare. There is not a day that goes by that I do not think about her cancer or what she has been through. I pray everyday that Sarah will be allowed to grow up and become a young woman, find happiness and live happily ever after. You know, a parent's wish.:) I am anxious about the 16th of November. That is her CT scan. One minute can change our lives forever. It is very very scarey. I just pray. I pray and beg God to heal her forever from this horrible disease. She is my daughter, I love her so much my heart hurts. I have been accused by people that I am an overprotected parent. It used to bother me. Now I say, "Thank you."

I am sorry that I am rambling. I am full of emotions. I am thankful that things are different than they were a year ago today. I am thankful for my daughters and husband.

Has anyone heard the country song- Skin? I guess it is by Rascal Flatts. It is about a girl, SarahBeth, diagnosed with leukemia. I heard it for the first time today flipping through radio stations. It was not what I wanted to listen to on an emotional day like today:)

I just found out today that our Relay for Life's theme for next year is--A passport to a cure. I would like to ask for your help. We would like to decorate with postcards from around the country. Do you know anyone from out of the USA that could send Sarah a postcard??? It will be so much fun seeing where they come from and if there is a note to Sarah. We will then use them in our decorations at our campsite for Relay. I will put our address on the bottom of the front page. Thank you!

Also, thank you for your prayers and support for Sarah and my family. Please keep our little friends in your prayers. Thanks again!!
Jackie

Monday, October 17, 2005 4:02 PM CDT

Hi all,
We celebrated Sarah's 9th birthday this past weekend. It was great! I can't believe she is 9! Needless to say it was emotional for me:) I am so thankful that Sarah is still with us and that things are going well. She is however, battling a little cold.

November will be a busy month. The 15th Sarah is due for an ultrasound for Renal to check her kidneys. They are keeping a close eye on her for any changes so they can prevent damage. Then on the 16th, she is due for her CT scan. I just received a call from UW to let me know of some future dates for Sarah. I must say it took me by surprise! The receptionist said, I have some appointments scheduled for Sarah for February, her 1 year post transplant date. I said, excuse me, did you say, February? Wow, we are really looking forward to the future. I am so used to monthly appts. or at least every 3 months. It felt pretty good.

Thank you for checking in and keeping Sarah in your prayers. Please keep her in your thoughts on the 15-16th.:)
Love, Jackie

Please keep some of our friends in your prayers:
Ben-currently in remission from wilm cancer
Emily-currently in remission from leukemia
Jack-undergoing stem cell transplant with neuroblastoma
Emma-currently in remission from leukemia
Caela-currently in remission from leukemia
Noelle-underwent cord blood transplant for leukemia
Christopher-home with hospice, brain cancer
Kristina-underwent bone marrow transplant for leukemia
Elizabeth-going through treatments for ewing scarcoma
Molly-had liver cancer, liver transplant and now some issues with her liver.

Wednesday, October 5, 2005 8:18 PM CDT

Hi all,
Today we went to the Dr. for clinic. Sarah's labs were good. All within normal range. Her physical went well too. On Monday she starts her last round of accutane. Then on November 16th she will have a CT scan.

We had a nice time at the hospital. We saw a lot of our favorite nurses. We even had lunch with Megan, a.k.a. my therapist, during transplant.:) There were a few nights I thought I was losing my mind and she came to my rescue.

We are planning on Sarah's 9th birthday. She will be 9 years old on the 15th. I can't believe my baby will be that old. I am so thankful to God for letting her stay with us. Both girls have always been such a gift.

Please keep Sarah and all our friends in your prayers. I know we all appreciate your support. Thank you!
Jackie

Saturday, September 24, 2005 6:22 PM CDT

Hello all,
Things have been going rather well. Both girls are enjoying school. The first couple of weeks, Sarah would come home tired. She felt overwhelmed being back in the classroom and having a strict routine. I am happy to say that she seems to have melted right back in to structure at school. Her teacher and I communicate with each other about how she is doing, if there are any concerns. It seems that all is well. Sarah comes home talking about music class a lot. I can hear her sing songs that she has learned and different lessons. Her music teacher and I were in the teacher prep room together the other day and I mentioned how wonderful it is to hear Sarah sing and talk about her day. Mrs. Fettig mentioned that Sarah VOLUNTEERED to get up in front of class to demonstrate a technique. I shared with Mrs. Fettig how wonderful and proud I was of Sarah to do this because after dealing with cancer, Sarah regressed. She was afraid to be center of attention. She absolutely hated it. It brought tears to my eyes that Sarah was growing independence and confidence. Even Mrs. Fettig had tears! It is something that I used to take for granted in the past. Being able to go to school, let alone music class, was just a normal part of life. Now it is much more.:)

Both girls are taking swim lessons. They are having a great time. It is hard to get them out of the water! They get that from their dad. I am more of a hot tub person:) On Saturdays the girls are in pom/poms. Kindergarten through 3rd grade participate in learning a routine and cheers for the football game in October. They are having a wonderful time and it is fun listening to them practice.

At school, the girls are able to see me every now and then in my room or in the hallway. It is truly wonderful to give them a hug and kiss and while I do, say a prayer of thanks to God that we are together at school and not at the hospital, sick.

The girls took their class pictures last week so I will be able to post their new pictures soon! Sarah is going to turn 9 years old October 15th!! I can't believe it. Thank you God for her, and Catherine. Sarah's hair is growning like a weed. It is curly and dark! She is just happy to have hair, it is a bonus that it came back curly again.

We are to go back to clinic on October 5th. This is for blood work and a physical. Then I received the phone call about the NEXT visit. Sarah is to come back on the 16th of November for labs and her CT. Please start your prayers now.:) Cancer moms and dads know what I am talking about. I can't explain the anxiousness(sp?) and FEAR that flow through me about a week before that appt. and that day. I get very worked up. Last time she had her CT, the radiologist came in to tell me everything looked fine. He said, "there are no signs of cancer." It was then that I had tears flowing down my cheeks, unstopable. Even now I am tearing up just remembering that day! November is a hard month. We had found out she had cancer November 1st 2002 and then relapsed November 7th 2004. Needless to say, it is a hard month:)

Well, I should probably go because I see I am rambling on! Sorry!! Thank you for your concern and prayers, Jackie

Thursday, September 8, 2005 5:03 PM CDT

Wow, the time sure does fly! The girls started school on September 1st and I went back to work, part-time at their school. Lets just say, IT FELT WONDERFUL TO BE BACK, FOR ALL OF US! Both girls have super teachers. Catie has Sarah's teacher from last year. Although, both came home pretty tired.

Since the last time I wrote, we went to Minnesota for a fun weekend with family. Of course our time was short but it was a enjoyable. Then the girls spent the night with my mom. Don and I were so excited! We didn't know what to do? It was nice having time together and we went out and had a great time. It is nice to know that after all the "stress" we still like being alone:) Whew!

Yesturday, Sarah and I went to Madison for a check-up and lab work. Everything was fine but we noticed that she is starting to get a cold. So last night I brought out the vicks (which the girls hate) and lathered them up and sent them to bed by 8pm. They both slept well through the night and woke up feeling much better. They are on the trampoline right now as I type.

Sarah is to go back to Madison on October 5th for labs and a check-up. That will be the last round of accutane that she needs. Then she is all done with her treatments. November will bring us back for the dreaded CT scan. BUT, for right now...things are FINE! It feels good! I do get a little anxious every now and then but I really try to reassure myself. I can get myself so worked up easily. It is comforting to know so many people are still praying for Sarah and I know prayer works. It has kept my sanity.

Look for new pictures (finally) tonight after the kids go to bed, I will get Don to post some new ones.

Again, thanks for your support, love and prayers!
Jackie

Thursday, August 18, 2005 9:57 PM CDT

Hi everyone, Things are going well here. On Monday I registered the girls at school. Sarah's teacher was there and we looked into her room. We were able to see her desk and her hook. This has made Sarah even more excited to start! Catie is looking forward to school but not as excited as Sarah. We stopped by Catie's old room and visited with her teacher from last year. Cate will miss her, they both are big animal lovers and there were cages with pets in the class; bird, guniea pig, lizard. I even stopped by my room to see if all was still there:) I am ready to go back and dig in.

We are off to Minnesota next week for a family birthday party. We are anxious to go and actually leave our house! There maybe a stop at the Mall of America:)

We had terrible storms and tornados go through tonight. The girls were very worried. It was actually kind have fun because we played monopoly while we waited things out. Plus, we were very fortunate that we didn't get hurt or any damage done.

Thank you for checking in on Sarah's updates. Thank you for your prayers and for continued healing. You all mean so much.
Jackie

Thursday, August 4, 2005 10:24 AM CDT

Wednesday August 10th

We went to the Dr. today for clinic. He said everything looks good and all test results are normal. We have "graduated" from transplant. What this means is that we now go back to seeing our primary oncologist. We do still see the transplant Dr. every three months. Sarah found out that she will have to receive her "baby shots" all over next spring. She is not too happy about that.:) Yesturday we celebrated being restricted free by going to Noah's Ark water park. Sarah won 4 tickets at our Relay for Life a couple of weeks ago. It all worked out good. So for now, nothing is new. We are going to spend the rest of summer enjoying life. We have a summer vacation planned and then Sept. 1st, is the first day of school!! Thank you so much for your prayers. Please keep Christopher from Texas and Christopher from Wisconsin in your prayers as these two little boys are fighting for their lives with this terrible beast, cancer.

Hi everyone,
We are still at the hospital having IV fluids run. We were at the hospital at 6am for the IV and labs and then the CT scan was at 8pm. I asked to see the Dr. who reads the scans after Sarah was finished. My heart was pounding and I was anxious! When he came into the CT room, he asked for another picture. My heart sunk, I was scared. He said, Oh, she looks fine, there is no evidence of any tumors, I just was checking her ureters with her kidneys. And they look good too! Praise God!!! Tears started to fall. Sarah looked at me and I said, these are happy tears! You are okay:) Her labs came back normal!! Things look great! Her restrictions are gone, she is feeling so happy. It is wonderful to see her smile! We are off to the mall and do some shopping and just enjoy the day as a family. THANK YOU EVERYONE for your prayers. I am just so relieved right now:)
Thanks again, Jackie

Tuesday, August 2, 2005 6:52 PM CDT

Hi all,
I know I said that I would write after we see the Dr. but today I spoke with his nurse and she wanted to tell me that Sarah is now off RESTRICTIONS!! Sarah has the green light to officially not wear a mask anymore and be able to be her old self again. It is a wonderful moment.:) The past 6 months have been such a wirl wind. A lot has happened. I am so happy for Sarah that she can go back to being an everyday kid. I pray that the cancer beast will stay away forever!!

On that note, tomorrow we leave to go to Madison. We are dropping off a 24 hour urine to make sure levels do not show neuroblastoma. Then we are going to spend the night at a hotel, do some swimming...and then on Thursday Sarah has a CT scan of her abdomen. This is scheduled for her 3 month check up. I am getting a little anxious. I pray so hard that all is well and clear. Please, please keep Sarah in your prayers during this time. Thank you so much. I will write again when the CT scan is over:)
Thanks, Jackie

Sunday, July 24, 2005 9:54 AM CDT

Howdy,
Things have been going well here. Sarah has started her accutane, 3rd round, only 3 more to go! This will take us to October. This medication makes Sarah more moody and she gets upset quickly. I think it is a test of what she will be like when she is 13! We went to the hospital picnic last Sunday. We all had a great time and enjoyed seeing a lot of familiar faces. I had to laugh with Emily's mom about our girls hair. I am not sure what kind of chemo that was used this time, but our daughters and another little girl, all have natural highlights in their hair.

We had a nice visit from our caringbridge friend Ben. We actually have known one another before the cancer. It has been about 5 years since the last visit. Thank you for stopping down Michelle!!

This weekend we celebrated our Relay for Life! What a great time. On Friday, Don and I went out to set up our camp while my mom stayed with the girls at our home. It was hot outside and we didn't want Sarah and Catie outside all day and all evening. It would be too much. Especially with the medication Sarah is on. She is to avoid the sun. Family and friends came out to say Hi and walk for our team. It was very heartwarming. The girls had a GREAT time playing with cousins and friends. Sarah and I walked the survivor lap together. That was special:) We all went to the grandstand to listen to the luminary ceremony. After we heard Sarah's name, it was time to go home. The girls, my mom and I went home to sleep but Don stayed out for the night. Saturday it looked like rain, so we started to take our camp down a little early. The money was being counted and at 2pm we all heard that Fort Atkinson had made $286,000!!! We will still get some money in as the fiscal year ends in August. That was great news! I pray that through this money and research, a cure is found soon.

We are laying low this week. Then the first week of August will bring us back to UW for a Ct scan and labs. I am not nervous, yet...:) The renal clinic called to say that Sarah's PTH result was elevated. A normal score is 0-60. Sarah's was 95. What this test does is detect calcium spilling into the blood and not staying in the bones. Calcium in the blood makes the kidneys work harder. We are trying to keep the kidneys from that. So Sarah will be put on a vitamin D suppliment, 3x's a week. I guess we can handle that. Other than that, all is well. Thank you for checking in on Sarah. Thank you for continuing to pray for her. I will update after the Ct and labs.
Jackie

Tuesday, July 12, 2005 2:26 PM CDT

Saturday July 16th

I had to add this. Last night we went to the outdoor theater to see Willy Wanka. The theater is near our town, maybe 7 miles away. The place was packed! We got there early and parked up front but cars were parked on the side and then had to carry their blankets in and sit on the grass where ever they could find a spot. Anyway, the girls and I thought we better use the restroom before the movie started and as we walked in the main concession area, there was Sarah's transplant Dr! And guess who was NOT wearing a mask?:) Sarah looked so busted. It was so neat to see him and his family out of the hospital setting, my girls didn't know what to say. It was kind have funny. And about the mask...nothing was said:)

*****NEW UPDATE****Wednesday July 13

Yesturday we went back to UW to see the transplant Dr. He said that labs looked good and that she looked well. He said that we received pleasant news from the kidney Dr. yesturday and that was great. He said he was pleased that her kidneys did well during transplant and still look good. We (Dr., Don and I) were very nervous about her kidneys and transplant. There was a good chance they would go into failure. Thank you God for your help through that:) He also said that August 8th will be her 6 month post transplant. During these past 5 1/2 months, Sarah, has not been back hospitalized. That is a great achievment. Usually, there is an infection during the first months. I am so impressed with Sarah. The news that Sarah was waiting to hear was that next month, she is off restrictions! I asked if she could attend school this fall and he said, yes! Sarah's smile beamed! She loves school. We also got the okay to go swimming, go to hotels, forget the mask, go shopping, etc. All this is to take place in August. We will check her labs to make sure, but he is pretty confident that she will be fine. This is a huge milestone for Sarah and for all of us. It means a life of getting back into routine. Sarah feels like a "normal" child. No more stares while she wears a mask. Although, I have to confess, it bothered me more than her. I want to protect her and when people stare, it made me feel bad for Sarah. I know that people will look. That is normal, I would look. But it is the stare and then wispers to eachother that got me. There is a thing called, tact. At least my girls have learned a lesson through this.:) The Dr. also said that August is time for her Ct scan. This will be the only follow-up test we will check on Sarah. The disease has never shown itself anywhere else in her body, so they feel confident to just continue to watch the primary site. We go August 4th at 6:00am for the start of an IV and Ct scan is at 7:30am. We will also check labs that day. Then on August 10th we will have clinic, check-up. Please keep Sarah in your prayers for the upcoming CT scan. Also, please keep all the children fighting this disease in your prayers. Thank you so much.

Hello,
Today we went to the hospital to see the renal Dr. We see her every 6 months (because of Sarah's polysistic kidney disease). There is no cure for kidney failure, just kidney transplant. So knowing that she has this disease, the Dr.'s are able to watch her closely and if things start to show signs of failure or distress, they can give her medications to help aliviate the work the kidneys do. They watch her bone and growth development, her heart valves, protein and creatine levels in her urine and blood pressure. So far everything is looking fine and in the normal ranges. She is to go back to UW in the fall for an ultrasound of her kidneys.

Then we went to have her labs drawn. They came back wonderful. It is still uncertain if the labs for isolation were done today. I will find out tomorrow when we go back to visit the transplant Dr. Sarah's WBC(white blood count) is 6.0 and her Hemaglobin is 12.6!! She is feeling good! She wants to be off isolation sooo bad. We catch her every once in awhile with her mask on the top of her head when she is outside playing. But for the most part, she does well with it.

Things have been going well. We are building our Relay for Life project this week and having a team decorating party on Saturday. Sarah is getting very excited about the event. I pray the weather is good for us.:)

Thank you for your prayers and for keeping Sarah in your thoughts. Please keep Micaela, Chris, Ben, Christopher, Emily, and Miracle Emma in your prayers.

Wednesday, July 6, 2005 9:23 AM CDT

Hello all,
Hope your 4th of July was fun and safe. Sarah has been busy with doing the summer reading program at our local library. She could not do summer school but we found time that we could go to the library when it was not busy with a lot of people. She is having a hard time wearing her mask. I find her outside holding the mask, having it in her pocket. She says it is so hot with it. We did go to another carnival over the weekend. My sister-in-law, Kathy, came up with the kids and we went on wristband day. Sarah decided to try the tilt O Whirl ride. The first time was ok but the second time on it made her queasy. The girls have been doing fireworks over the weekend. Sunday night they were doing some sparklers when a piece fell off and landed on Sarah's toes. Needless to say she was burned between her big toe and the one next. Poor Sarah, can she ever get a break??:) Friday Don is taking off of work and we are planning on going to the Milwaukee zoo. We will be avoiding the petting zoo due to Sarah's limitations. I will have my purell and antibacterial wipes with me.:) I am a walking medical station with bandaids, sunblock, tissues, etc. I think the girls are going to have a sleepover in the camper with Don this weekend. (yea! a couple of nights to myself:)

Sarah is due back to clinic on Wed. July 13th. She will have blood drawn and then an appt. I have a lot of questions for her transplant Dr. August will mark Sarah's SIXTH month from transplant! (that time flew by) Her restrictions should be lifted?! I hate to get my hopes up. She will also have to have her 3 month CT scan in August. But I won't worry about that yet:) Have a great week and I will write after the Dr. appt.
Thank you for checking in on Sarah and for your prayers!
Jackie

Monday, June 20, 2005 9:06 AM CDT

NEW PICTURES!!!

Good Morning, Things are going well. We had a fun filled weekend and enjoyed spending time together. We had our Father's Day cookout with Don's mom and sister here at our house. The girls had a blast riding the rides at our carnival, you can tell by the new pictures.:) Today Sarah starts her 2nd round of accutane. We are going to start with the creams now to keep up on her skin drying out. Hopefully she won't have a bad reaction this time.

We are going back to Madison on the 13th for blood work. Until then...enjoy the summer!!:) Thank you for your prayers.
Jackie

Thursday, June 16, 2005 8:55 PM CDT

Hi all,
We went to the Dr. yesturday for labs and clinic. Everything looked great! Her labs were in the normal range. They checked her numbers to see if they could take away restrictions but they were close but not close enough. A couple of counts even dropped since last month. This is due to the accutane that she is on. So it looks like she is going to be in restrictions all summer. We were hopeful:)

We are going to our local carnival this weekend and the girls and Don are going to camp out in our camper for Fathers day. I get the house to myself ( I love fathers day:) Hee, Hee! Things are going well and we are enjoying the cool weather. We are to go back to clinic on July 13th for labs and visit. Sarah got the ok to start her 2nd round of accutane on the 20th of June. Please keep Sarah in your prayers. Thank you so much!!
Jackie

HAPPY FATHERS DAY!!:)

Saturday, June 11, 2005 8:28 AM CDT

Hi all,
Things are going well. Sarah was able to go to school these past few days. The school has had outside activities planned. Sarah has been smiling and laughing so much this past week, it has been wonderful! She was able to attend yesturday (the last day of school) and put an end to this past year. I think it helped her be part of the class and all say good bye, clean out her desk (after the kids left the school). And feel like a regular kid. She has met her teacher for next year and is excited to start. Catie will have Sarah's past teacher and she is glad for that. We have became friends and I am looking forward to the next school year.

Sarah's on her two week off period with her accutane medicine. She starts up again on the 2oth. Her skin looks better. It is actually back to normal. Hopefully the next session will go more smoothly. I am looking forward to summer and hanging out. Having us all home. Sarah goes to the hospital on the 15th for blood work to see how things are improving. She goes once a month for bloodwork and every 3 months for a CT scan. That will be in August. So, I will write again on the 15th to let you know how the blood looks.

Thank you for the prayers and your support.
Jackie

Sunday, June 5, 2005 9:50 PM CDT

Hi all,
Things are going well here. Today Sarah has finished her accutane medicine. She gets 2 weeks off then she starts up with another 2 weeks. The medicine makes her skin VERY dry and she has mood swings. This is the last week of school and Catie is looking forward to that. We are looking forward to the summer. We don't have anything big planned but hang out and be together. Friday night Don and I got a babysitter. We went out to dinner and really had a chance to talk. It went well. The last time we went out to be together was 6 months ago. We had a lot of catching up to do.:) Today we took the girls to see Beauty and the Beast at the Fireside theater. I bought the tickets a year ago not even thinking what might happen this year. We had a great time! We go back to the hospital on the 15th to get blood work taken. I pray that all is well and the isolation restrictions are lifted. Thank you for your continued prayers and support.
Jackie

Wednesday, May 25, 2005 11:29 AM CDT

Hi there!

Sarah had a great weekend at her 1st communion on Saturday night. She was so excited all day long. It was beautiful and very meaningful for all of us. Then on Sunday we had some family and friends over for an open house. The weather was gorgeous and we couldn't have asked for a better weekend.

Things are going well and Sarah is feeling fine. She is dealing with a bad case of excema. She has had a hard time with dry skin for years. I called the Dr. today and they are going to prescribe her cream to help. Other than that, we are planning a fun filled weekend. We are going to the outdoor theater to see Madagascar and Pacifier. Then we are off to the zoo for a picnic and spend time with my mom and brother and his family.

Sarah is to go back to the hospital on the 15th of June for labs and a check up. It feels good not going there every week. Thanks for checking in on Sarah. Also, thank you for your prayers.
Jackie

Wednesday, May 18, 2005 6:15 PM CDT

Hi all,
Today Sarah and I went to Madison to clinic to have her labs drawn. Everything looked fine. I was elated! Thank you for your prayers:) There is a certain cell called her T-cells, they give us an indication of how well her immune system is behaving. At day 100 from transplant they should be at 200. Today they were at 484! Again, another praise!! Tomorrow will be Sarah's day 100!!! Those 100 days went by so fast. (did I say that:) Sarah is feeling good and is very excited about her 1st Communion this weekend. We did get the okay to go ahead with that. Her percautions remain but the Dr. did say that if there are events that are big, meaningful, that we should go ahead and do them. Sarah is in good spirits and that is all that matters. Catie is doing well and is glad that we are all home together. Sarah starts her next medicine, accutane. This is the end of this treatment protocol. We go back on June 15th for labs. Otherwise it looks like we can enjoy the summer!! Thank you for checking in on Sarah and for your continued prayers.
Jackie

Thursday, May 12, 2005 10:09 AM CDT

Hi all,
I called this morning to speak with the nurse practioner about Sarah's results. The CT scan came back negative!!! Thank you dear Lord:) Then we spoke about what the Dr. told us yesturday with her platelet count. I was worried, actually TERRIFED, that it meant disease was in her marrow. The nurse reasured me that Sarah has never had disease in the marrow and it is highly unlikely after a transplant for it to occur there and not in her primary spot( the abdomen). This reasurance has helped. The precautions that Sarah has to remain with are minor in the big picture of cancer. We were all hopeful that her counts would be normal. The Dr. said that a time frame of 6 months is more normal. That would mean around August that Sarah would be able to get rid of the mask and precautions. Sarah feels bummed but we are trying to make light of it. I am happy to have her here with me at home and able to soak her up! Catie has decided not to do summer school so that she can be with Sarah. I guess our summer will consist of laying low and taking it easy. I guess that doesn't sound too bad:) Please pray for rising platelet numbers, we appreciate that very much.
Thanks, Jackie

Wednesday, May 11, 2005 5:58 PM CDT

Hi there,
We have returned from a LONG, LONG day at UW. We arrived to start an IV and start hydration. Nobody to poke Sarah's veins. It took 3 different people and 4 hours until we finally got it to work. Needless to say, it went awful. Then the Ct scan took longer than expected and that added to the frustration. We met with the Dr. and found out that Sarah has to stay in isolation with the same precautions as she has had for the summer. There is a chance that this particular # that we are waiting for will skyrocket, but it sounds like it usually takes time. We are bummed but tried to look at the positives. We made light of the situation as much as possible. Her platelet labs are low and the Dr. feels that she is still repairing from radiation. So for now, we are to go back next week for labs and a visit to check the platelets. Then if they are rebounding, she can start her accutane medicine. If they are lower than today, the Dr. will do a bone marrow aspiration to double check the marrow. We are all exhausted and feel bummed out about the isolation protocol. But we are thankful that all is going well. We should hear about her CT scan results tomorrow. That is about it.
Jackie

Thursday, May 5, 2005 8:32 AM CDT

Hello all,
What a great couple of days. Tuesday night we went to Madison to golf land, to shoot a commercial for channel 3. This commercial is to promote a fundraiser that will be held at golf land June 4th. The money raised will help cancer kids and their families. Candlelighters is the group behind this event. They put together bags for new families with gas cards, toys, phone cards, etc. They hand out information on cancer with phone numbers and they are a unit families can call for help. There were probably 20 kids there Tuesday, some with cancer and their siblings. The girls had fun running into their friend, Caela and brother, Kyle. I enjoyed talking with mom, Trish. It is WONDERFUL to see these kids outside, playing and having fun.

Yesturday we went back to Madison to help with the radiothon. The money being raised will stay at the hospital for research, the new hospital and to get us closer to the cure. It was an awesome experience for all of us. We saw so many people, it was like a reunion. I have to add that we are very thankful to the radiation team that greeted us as we walked in. They came up to the floor knowing Sarah would be there betweeen 12-1pm. It was truly wonderful to see them all and it really meant A LOT to Sarah and all of us! Thank you!!! Sarah decided not to say anything, she got nervous. Catie spoke and answered questions. I was very proud of her. It was a little scarey. Don was there too and he did most of the interview. He was asked questions about being the dad and trying to fix the problem. It was very emotional and he broke down. He even got another dad tearing up crying who was sitting behind us. It was a blessing to be part of the event and we are glad to help give back something. All the care and support we have had, it felt good to help.

While at the hospital, I ran into Sarah's cancer Dr. Her primary Dr. not transplant Dr. Anyway, he said that he wants her to start another drug treatment next week Wed. She has been on it before. It is called accutane. This has shown promising results with keeping neuroblastoma from forming, especially after transplant. He also feels good about how well Sarah is doing and feels her numbers will be fine next week. Fine, meaning that she will be out of isolation. We sure do hope so!!

Sarah is to go to clinic next Wed. She will have labs, a CT scan of her abdomen and clinic. The transplant Dr. and radiation Dr. wants to exam her. Then we have to make an appointment with the kidney Dr. to get a check up. It will be a busy day! But, if the news is good about being out of isolation, watch out stores, here we come!!! Sarah is ready to shop and go out.:) Thanks for listening and for your support.
Jackie

Monday, May 2, 2005 10:21 AM CDT

Hi all,
Things are going well. I just wanted to let you know the time of the radiothon. We are speaking on Wednesday May 4th between noon and 1pm. The radio station is 104.1 fm. I hope it goes well:) I will let you know how it goes!
Thanks, Jackie

Thursday, April 28, 2005 3:18 PM CDT

Hi all,
Just a quick note to say that everything is going well. Sarah is feeling good and she is happy that she is caught up with her homework for school. Her teacher has been coming over to work with her. We are looking forward to May to begin. Next week begins with helping raise money for cancer. Tuesday the girls are going to be on a commercial(along with other cancer kids) to help raise money. Channel 3 out of Madison is going to tape this and air it the month of May. Then on Wednesday we are going to go to the hospital to help out with the radiothon, that is raising money for a new children's hospital. Z104, a local radio station, is going to be there to interview us at noon to tell Sarah's story. We are very excited and feel great that we can help out. I know our friend, Caela, will be there too and it will be great to see her. Then on May 11th, Sarah will go up to the hospital for a CT scan of her abdomen for her 3 month check up! Ahh!:) She will also have her blood work done so we will know if she is out of isolation. She is very excited to be out of isolation. We wrap up the month with her 1st Communion. She has her dress and veil and looks beautiful,if I do say so:) Please keep her in your prayers for the 11th. I really dislike the Ct scans.:) Thanks, Jackie

Friday, April 15, 2005 10:55 AM CDT

Hi all,
Today is Sarah's last day of treatments!!! She has radiation at 3:30pm. She has finished some awful intense treatments. She has SURVIVED! It doesn't seem like that long ago that I wrote and pleaded for your prayers when we found out Sarah had relapsed. Our world fell apart. We were so frightened. I didn't know what would come out of this. We had to make decisions that were potentially life threatening. I can finally take a deep breath and smile:)

We are to come back in the early part of May for scans and clinic. Sarah is so excited and proud that she is done and has come out doing so well. We are so thankful and appreciative of how well she is doing. She looks and feels great. I feel like she was given a second chance on life. We are going to enjoy life and TRY not to take it for granted. It is scarey being done. Here we go again... but I will not let it paralize me like last time she was finished. I don't know what life will bring to any of us. I will have some panic moments, I am a mom, I am supposed to:) But for today, I will absorb the happiness and gratefullness Sarah is showing and celebrate with her and show her she is a true gift!
Jackie

Hug your kids a little longer tonight:)

Wednesday, April 13, 2005 5:03 PM CDT

Hello,
Today radiation was cancelled because the machine broke. So Sarah will go tomorrow and Friday. It was nice having today off. I started cleaning out the basement. Sarah is very happy to have her hickman out. She can bathe on Friday. Our Relay friend, Candy, came over with some fun bath accessories.:)

I wanted to post a new entry today because a little boy, Christopher, is in need of some prayers. He is at the UW hospital ICU. He had his stem cell transplant last week and he is undergoing some complications. His website is www.caringbridge.org/wi/christopher

Please pray for Christopher and his family. Thank you all and thank you for your support and prayers for Sarah.
Jackie

Tuesday, April 12, 2005 2:15 PM CDT

Hi all,
Don took Sarah to radiation today. I am going to Catie's parent/teacher conference. I had the day to run some much needed errands.

Today is day 63 post transplant. Sarah is getting her hickman central line out today! As a matter of fact she and Don just called me to say it is gone! We were going to do it tomorrow but there was an opening today so we grabbed it. Yesturday Sarah had labs drawn and her immune system took a little hit from radiation. Her Wbc's are lowwer than the normal range so we are taking extra precautions. She feels fine and looks great, we just don't want to break a good thing:) I asked to have her immune system checked to see where she was at. They check her blood for t-cells called cd#4. If her number is 200 or more she can go off her medicines. Usually the Dr.'s don't check this until the magic 100 days. But they did for Sarah and they came back 361!!! Great news!! They also check her immunalglobin(sp?) to see how well that is. I really don't know much about that test but it checked 3 different things. One of the tests are in normal range and the other 2 are just shy of the normal range. We are going to check them again in the begining of May. I know that when these 2 tests read normal range, Sarah can take off the mask and go out of isolation! So close...

Sarah wanted me to make spaghetti tonight for her special meal. I have a small cake that reads congratulations. It is so emotional. Sarah made it once again. She had to go through treatments twice! We held are breathe through transplant and prayed so hard that everything would be ok. Sarah had to give up another year of being a child in school and taking sports. She has had to adjust to this world of the sick. I am so thankful to God that we have Sarah and that hopefully she is now cured. I am so ready to get our old life back and for us all to just be normal again. We received the okay to go ahead with Sarah's 1st Communion scheduled in May. It feels so wonderful to think ahead and plan for the future. Thank you all so much for your prayers and support for Sarah. You have witnessed once again the power of prayer and miracles. Thursday Sarah is done with radiation and with God's grace, she is done forever. This is a great week:)
Jackie

Wednesday, April 6, 2005 4:18 PM CDT

Hi all,
Things are going well. Radiation is going fine. The staff is so nice. Sarah's labs are down a bit but they are still in the normal range. Only 6 more radiations to go!! Sarah has been enjoying the weather and playing with her sister. Thank you for checking in on us. Sarah has clinic next week Wednesday along with her hickman removal!! That night she wants to soak in our bath tub. It has been since November since she has had a real bath. Take care and enjoy the weather!!:)
Jackie

Thursday, March 31, 2005 9:46 AM CST

Happy end of the month!
Sarah did well at clinic. Labs all looked good. They dropped but were still in the normal range. Her electrolytes were off some. She always had trouble with keeping her magnesium high. I received a call from radiation and they said the machine is down right now. I am supposed to call back before I leave to make sure it is working. We may have a day off!

Sarah found out at clinic that her hickman central line is coming out April 13th!! She is so excited. (we all are:)
Her hair is starting to show signs of new growth. She never did completely go bald like she did the first time she had cancer. She wears a bandana now that the weather is a little warmer. I told her she looks like she is ready to ride a Harley.:) Thanks for checking in on us.
Jackie

Tuesday, March 29, 2005 8:23 AM CST

Yesturday was the first day of radiation. The whole family came for support.:) Sarah was a trooper. She jumped up on the table, into her "cast" and was ready. The cast is a form that molds her lower body so she doesn't move. Then the machine, called tomotherapy, gave her a quick ct scan to make sure she was lined up correctly. Then the actual radiation takes 6 minutes. She laid there still and did a great job! We had 2 very nice, friendly technicians. Sarah felt very comfortable and they really helped my anxiety. I could watch Sarah through a tv monitor. She wore protective hearing plugs as it is a little loud in there. When she was all done, she jumped off the bed and was ready to visit the zoo. We thought,"how wonderful, this is easy..."

The zoo was nice but as we were leaving, the nausea set in. We started off home and we had to stop along side the road. All I had was a kleenex box, thank goodness:) Then we had to make one more stop on the way home. Whew! I was thankful to get home. Once home I was able to give her some medicine and that was it. The night was good. So today, I am prepared:) Sarah has labs, radiation and clinic today. It will be a long day. A long day of waiting around. Clinic takes forever. Oh well, it is necessary.

Sarah has one radiation down, 12 more to go. Then she is done!! I think she will be on medication called cis-retinic acid. It is accutane. She has done that protocol before but obviously not after a transplant like it is written to do so. Hopefully with God's grace this will be the ticket to cure. Thanks for listening. I will write more later when I found out what is up at clinic.
Jackie

Monday, March 28, 2005 10:26 AM CST

Hope everyone had a nice Easter. The weather was beautiful here. The girls received a trampoline, with sides, from their Grandma and spent the day jumping and laughing. As the day went on I was reminded how truely blessed we are. I can't help but appreciate each day. Going through everything Sarah has and not knowing what the future will hold really puts life in perspective. Maybe it is the new warm weather and the start of spring that really makes us all feel better. As I type, I can hear the robins sing. I have the windows open just a bit and the fresh air feels so good.:)

I am anxious about today. Sarah starts radiation today at 2pm. She will go for 13 days. We have never experienced this treatment before and I pray that she tolerates it well. We are going in with a positive attitude.:) Please pray for our friends, Emma, Kyle and Ben. Dear Emma is at her home being with her loving family. Kyle is on chemotherapy treatments but is having some difficulties with a persistant fungus. This puts him on steriods which are reeking havic on his emotions. And Ben starts another round of chemo. With each chemo or treatment, it is hard to predict how well they will respond. Thanks for listening and for your thoughts and prayers.
Jackie

Friday, March 25, 2005 8:34 AM CST

Happy Easter!!

Sarah's appointment went well on Wednesday. They have discontinued her TPN because she is eating normal again. Her labs all looked normal. Thank you God:) Every Dr. appt. Sarah asks when she can go shopping? The Dr. always laughs because she is very persistant and then gives her big puppy dog eyes, flutters her eyelashes, anything to try to get her to say yes.

Catie is home now for Spring break. The girls have been playing and enjoying themselves. Grandma Rego has come down to stay for Easter. The weather looks like it will hold out for a Easter egg hunt on Sunday. My brother and his family will be here and the girls are looking forward to seeing their cousins.

We are very thankful during this Easter weekend. We feel very blessed. Have a blessed holiday.
Jackie

Monday, March 21, 2005 12:30 AM CST

Hello everyone,
Things are going well here. Sarah is feeling better each day. I just received a call from the radiation Dr. and she said the machine is down for a few days. So our radiation appointment has been cancelled until next week. Sarah will start on Monday the 28th. We are a little bummed because Sarah wants to get her hickman out soon. The only reason it is still in is because she MAY need it for tpn during radiation IF she feels nausaus. She is eating normal now and still takes the tpn, but we could discountinue it. We have just been waiting to see how she is going to react to radiation. Anyway, that is about it. All is going well. Thanks for checking in on us. Sarah is going to the Dr. on Wednesday for labs and check up. Thanks again, Jackie

Wednesday, March 16, 2005 9:34 PM CST

Happy St. Patricks Day!( a little early)

Sarah had clinic today. Her labs came back all in normal range, except for magnesium. That is not a big deal. We are going to continue with the TPN at night, especially since she starts radiation next week. She may lose her appetite again. She was full of vinegar today and was all over the hospital visiting. It is children's week at the hospital, so there were fun events planned. Bucky Badger stopped by to say HI. We saw our friend, Caela and watched her throw jello at some of the residents for a fun event. Sarah chickened out! The hospital is building a new state of the art children's hospital connected to the main area. It should be done in 2007. Fundraising is going on to help with the cost of this beautiful plan. So, today local radio station Z104 was there to interview myself and a couple others to use on their broadcast. It was a lot of fun. They are going to use what I say and incoporate it in a song. Fish, the DJ, wants to use the song, Wind Beneath my Wing, for us. Z104 is a "younger" crowd radio station. I used to listen to it all the time when I was in high school. Now, I have moved to a "different" level.:) But I will start listening again so I can hear the promotion. My girls will enjoy it:)

Check out Emma's birthday pictures! Way to go Emma!! Things are going well. I am getting a little nervous about radiation next week. This is something we have never encountered. Don is leaving for a school in Appleton next week, so I am feeling anxious. Please keep the prayers coming:) Thanks
Jackie

Monday, March 14, 2005 9:26 PM CST

It is with great saddness that I write tonight. Our friend, Teresa, who has been fighting for her life, has died this evening. Teresa had a disease called graft vs. host disease. This happens when someone has a bone marrow tranplant and uses a donor for marrow. The patient's body rejects the marrow. This does not happen all the time. I met her mom, Paula, when Sarah had relapsed. Paula was a very friendly woman. She always had time to talk and visit for a bit. Even when times were heart wrenching for her, she would always ask about Sarah. I am at a loss for words. What Paula and her family are going through is my worst fear. When Sarah relapsed, it brought that fear closer. I don't understand why? I will never know. I guess that is where we rely on faith. Please pray for Teresa's family.

Thank you, Jackie

Thursday, March 10, 2005 9:07 AM CST

Hi all,
Yesturday Sarah had a clinic appt. and had to meet the radiation crew. All 4 of us came along. Sarah was fitted with a mold cast of her upper torso. This allows her to remain still in the same position for every appt. She was able to meet the radiation Dr. and feel comfortable with her. Then she saw the room that the radiation will take place. We could ask questions but Sarah was acting shy. At last we had her CT scan done so the radiation machine knows where to point the radiation. It all went well.

Then she had clinic. We met with the transplant Dr. and all looked well. Her labs are all fine. We are going to tapper the TPN to 8 hours instead of 14. Maybe by next week Wednesday she will be off that. She is down to one dose of dolasatron(anti-nausea medication). We saw our friend, Caela and her mom, Trish. They were doing well and look GREAT! Caela gave Sarah a special angel bear to watch over her during her transplant. This bear had been passed down from a few different patients to watch over them during their transplants. Caela did well during her transplant and Sarah did well. I am waiting to see who the next patient going through transplant will be so I can pass it along.

So, what is next with Sarah's treatments? She goes back next week Wednesday for clinic and lab work. Then on March 22nd, she starts radiation. It is at noon for a total of 13 days, excluding weekends. Then Sarah is ALL done!! She just needs to keep healing physically and emotionally. The summer will be here before we know it! Thank goodness, I am getting the itch to get outside and do some gardening. Today it is snowing and I could just cry:)

Thank you for checking in with us. Please keep Emma and Theresa in your prayers. Their lungs are not working too well caused from graft vs. host disease. Theresa is in the ICU at the hospital where she has been for 4 weeks. Emma is at home and will be having a birthday on the 13th!
Thank you all so much.
Jackie

Monday, March 7, 2005 8:09 AM CST

Good Morning!
The weekend went well. Friday night we had our movie night and it was fun:) Sarah decided that she would have some more to eat. She wanted spaghetti and bread. She did pretty good eating maybe a 1/2 cup and a slice of bread. Then for our movie, she had popcorn. This seemed to be the turn around for her. All weekend she has been gaining her appetite back. Saturday she was so hungry for chessey shells, that she inhaled it. Only for it to not settle well and come back up. Yesturday was a beautiful day outside. The girls went outside to play and ride their bikes with the neighbor kids in our cul-de-sac. It was GREAT! Sarah had to wear a mask and we had her wear her sunglasses because it was so sunny. She looked like a masked robber. She didn't care, she just wanted to get outside and be a kid! I only gave Sarah one dose of her anti-nausea medication yesturday to see what would happen. She tolerated it well. Today I will not give her any and see how she does.

We feel blessed. Sarah is healing and making improvments. We are so thankful. Sarah has received yet another miracle.:)
Jackie

Friday, March 4, 2005 1:30 PM CST

I received a call on Thursday morning from the clinic saying that Sarah's labs were good. She is to come back next week Wednesday for another check up.

Sarah is feeling better. There is a light at the end of the tunnel:) Yesturday she and Catie went outside for about 1/2 hour to get some fresh air. I watched with tears as I saw them swinging and heard them laughing. Sarah wanted to get outside to see the snow before it melted. Her nausea has subsided and she is feeling more like herself. Today, Sarah and I went for a ride and looked around the town. She wanted to get some french fries. I think she ate 6 or so. It is a start! At least she wants to try to eat. Then she decorated some plastic Easter eggs for the Easter Egg Hunt. We are now off to the basement to look through the toys and organize. It feels good. Thanks to our friends, the Hoyes, we are getting some videos and making popcorn for our traditional movie night. I really love the simple things we did. I thank God we are able to still enjoy them. Thank you for checking on us and signing the guest book. We look everyday and it warms all of our hearts to read the messages.
Jackie

Wednesday, March 2, 2005 6:50 PM CST

Today Sarah and I went to Madison for clinic. She has been feeling better. Still a little pukey but we see improvement. She is still not eating but knows how important it is to try. Now that her nausea is better, she said she will try harder. Her clinic appt. was a nightmare because of the **&ickman!!! It didn't work to draw labs. Sarah's veins are so deep and not good, so she couldn't even get poked! We ended up getting blood from her foot. What should have been a hour appt., ended up being 5 hours!! The nurse practioner feels maybe Sarah should get her hickman removed and have a picc line placed in her arm. Sarah is dead set against this idea. I don't know what to do. Sarah wants to continue with blood pokes in her foot. She would rather do that than get a picc line. I don't know!??

The good news is that her labs looked good. Tomorrow I will find out her chemistries ( magnesium, liver functions, etc.) Otherwise things are looking brighter.

Another bit of good news is that our friend, Emma, is still amazing her parents and showing improvements. Way to go Emma! Thank you for your continued support and prayers.
Jackie

Sunday, February 27, 2005 8:38 AM CST

The past couple of days have been emotional. when I returned to the hospital on Friday, Don told me that Sarah was real nausiated(sp?) and SAD. He was right! She would moan and cry. But she perked up when she saw Catie come into to the room. Then the 4 of us went to an area that was hepa-filtered and played a game. This was the second time Sarah wanted to get out of her room. Then Don and Catie left for the night and Sarah started to feel bad again. The rest of the night she was real restless, very pukey, and very sad. She kept saying," I know we are going home tomorrow, but I want to go NOW" Saturday morning came and we had to wait to see the Dr.'s. I have to say they were good about seeing us early so we could go. We had already packed up the van and picked up Sarah's prescriptions on Friday so we were all ready. Child Life came in to give Sarah a cake and banner. Sarah just wanted to go home so we took it with us. She is not eating anyway. When we put Sarah in her wheelchair for the ride down, she started to cry. She said they were happy tears and that she just wanted to go home. Then I gave her a hug and said," I am so incredibly proud of you right now, you are a survivor!" Then I started to cry. Don started to cry. We were so afraid of what could have happened during transplant. The Dr.'s were unknown what her kidneys would do. That terrified us because we didn't know what to expect. As we got on the elevator, I said," you made it Sarah, we are going home!" Don said, "we all made it, we are all going home toether."

As soon as Sarah walked into the house she sat on the sofa and looked around, then wanted to go see her room. She was still very tired and nausiated. The rest of the night she rested on the sofa. Don and I unpacked and put away her medicines and care stuff. She is to be hooked up for 12 hours to TNA nutrition. She also has anti-nausea medicines and two other medicnines to take. We have downed sized from the hospital. Sarah rested more comfortably last night.

This morning she is still feeling a little "pukey" but she is in better spirits and with Catie. Her best friend is back! I can't explain how good it feels to be home and to hear the girls talking and playing. Thank you God and thank you to all of you for continuing to pray for Sarah's healing. I will write more later but right now I want to be with my family.
Jackie

Saturday, February 26, 2005 3:54 PM CST

Today is day 18!!

WE ARE HOME !!!! YEAH!!!! We will continue to update more but the important thing is that we are ALL home. Sarah is very excited but is still dealing with alot of nausea. We'll update more tomorrow.

Thank to all who prayed and kept Sarah and our whole family in your prayer. The power of prayer has once again PREVAILED.

Thanks to All,

Don

Friday, February 25, 2005 5:11 PM CST

Today is day 17!

The exciting news is that Sarah's nausea is better. She is feeling good and is wanting to go home. So, tomorrow is the day!!! All things are set so that we should be leaving here by lunch.:) Sarah is very anxious to leave. We hope all goes well so that we do actually walk out tomorrow:) Please continue to pray for Sarah that she continues to heal. Thank you, Jackie

Thursday, February 24, 2005 12:48 AM CST

Hello Day 16!
Well, a lot has been happening. Sarah is still doing a great job. Her labs are going in the right direction and there is an approvement in her physically. Sarah is very, very sad. She wants to come home. I don't want to call it depression but she is tired of being there and wants to come home. So, yesturday I took her out of her room for the first time. We were limited to a small hallway but at least it was a change and she was sitting up in a wheelchair. The past 3 weeks she has been in a fetal position in bed. When her Dr.'s came in last night to see her, we talked about what things need to happen before Sarah can come home. It turns out there is not a whole lot to do. She needs to take her medications orally, get rid of the morphine and work on her nausea (get moving around more). Sarah started to cry and say she wants to come home and she is sad. I walked out in the hallway with the Dr.'s and we discussed the possibility of getting her home this weekend!!! They agreed! So, you read it right, if Sarah continues to do well, she will be home this weekend. That news made a little girl smile and gave her the determination to work hard. As of this morning the morphine is gone! She is switching her medicines orally and she is working on moving and gaining some strength. Don is with her as I am home with Catie. Catie has a virus of some sort going on. She has a low grade fever. So it is time to get her healthy and this house ready for all of us to be home TOGETHER!! I don't want to sound mean but the doors will be locked and the phone turned off for a few days, so we can soak up some quiet family time!:) I can't believe how wonderful this is! We and the Dr.'s were nervous going into transplant not knowing what her kidneys would do. Again, a MIRACLE!!! And then for her to come home so soon! I am almost a little nervous saying all this because something could happen and keep her there a little longer. So, my breath is still being held, yet there is a smile on our faces:)
Thank you and bless you all,
Jackie

Tuesday, February 22, 2005 9:05 AM CST

Today is day 14!
Sarah continues to climb up the hill. Her labs all look good. Fevers have stayed away and the Dr.'s are taking away her antibiotics one by one. They continue to lower her morphine. Sarah has been sleeping all day and night. I guess her body needs the rest to heal. Today she woke up more alert and talkative. Yet now she is back to sleep. Her hickman is still giving us problems. It is a chore to get blood out of that thing. The lab tech., Sarah and myself get so frustrated. I can't wait until we can pull that thing from her. Although I know it will be a couple of months before we can do that.

Things are going on course here. I hope that Sarah will wake up more today. Our friend, Theresa, is still in the ICU. Kyle, is out of ICU and back on the floor. Things seem stable for him right now. And Emma, is home and continues to amaze her family. Miracles are needed! Please continue to pray! Thank you,
Jackie

Sunday, February 20, 2005 1:28 PM CST

Hello everyone,
Today is day 12! Sarah is continuing to do well. She is resting a lot. Her labs all look good and she has been without fever for almost 48 hours. Sarah still needs platelet transfusions. As Don mentioned, they are the last to repair. The Dr. came in today to say they are taking her off 2 of her antibiotics and slowly lowering her morhine. The Dr. is also dropping her GCSF medication that helps her body produce WBC and ANC. But the GCSF can hinder the bone marrow from making platelets. Sarah still has no appetite, so McDonalds and Taco Bell will have to wait. Our goals this week are for her to remain without fever, get her off the pain medication and antibiotics and get her to where she does not need platelet transfusions. Don and Catie left for home today. Grandma Rego is there to help. Catie and I had a great time together. It was a lot of fun spending one on one time with her. I know Don enjoyed his time with Sarah. He was a rock this past week when things were very scarey and emotional. I am thankful and very lucky. Don had his "system" when he was here. He would ask staff questions and kept up on our journal. He knew when and what each nurse, Dr. or N.A. was doing. I had to laugh this morning when the oncologist asked Don when she last had a fever and felt nausous. I will be so thankful for all of us to be home together. I want to lock the doors and take the phone off the hook and watch our girls be together.

Please pray for a couple of friends of ours here. Theresa is in the ICU on a ventilator. She has lung damage from GVH disease like our friend Emma. Theresa is 17 years old and her family is just heartwarming. Kyle is in the ICU. He is 10 and has been running fevers and low blood pressures. He has ALL luekemia since Sept. 2004. His mom, Lori, is so nice. It has been an emotional rollercoaster this past week. The hospital is full! These poor children and their families. Thank you so much for your prayers for Sarah. We appreciate you all!
Jackie

Saturday, February 19, 2005 12:53 AM CST

Greetings All,

Sorry for the delay in the update, but I was waiting for all of the lab reports to come back.

Yesterday afternoon Jackie and Catie came up. Sarah was very excited to see them. Sarah stayed awake for about 3 hours and when Jackie and Catie left Sarah was exhausted. It was nice to see everyone�s spirits lifted by having us all together.

Last night was once again restful. Sarah got a platelet transfusion at 11pm. This time the blood bank was able to supply a one donor dose. This greatly reduced the chance that Sarah would have a reaction to the transfusion. She had no reaction except for a slight increase in temperature. Sarah was able to go the entire night without running any temperature what so ever.

This morning her lab draw was slightly better but still a complete pain in the butt. Sarah has been feeling nauseous first thing in the morning and this has coincided with her lab draws�.grrrrrr!! However the labs were definitely worth waiting for. Her platelet count was a 38 which is awesome considering it has been <5 for the past three mornings. Her ANC was an incredible 2950, yesterday it was 520. I am completely shocked by a jump that large. I was aiming conservative and hoping for 750. Sarah is on a drug called GCSF which stimulates her bone marrow to produce higher numbers of white blood cells. Based on the ANC today, this will probably be her last night of GCSF. Then we will look to see how far her ANC drops without the GCSF. Also the numbers which reflect her kidney function have moved slightly down in a good direction.

Now that Sarah has maintained an ANC of 500 or greater for two days, she is able to have food from outside the hospital. So if she wanted McDonalds or Taco Bell, etc. she could have it. Though she still can not have any fresh fruits and vegetables or uncooked meat.

The last hurdle the doctors are keeping an eye on is to insure that Sarah does not develop VOD (venal occlusive disease). This disease mainly affects the liver. Sarah has not exhibited any symptoms of VOD except for the consumption of platelets, so the doctors are not too concerned.

Please continue to keep Sarah in your thoughts and prayers as she clears this final step. I suspect that as the numbers continue to improve the doctors will begin talking with us about preparations for going home. We are still taking it day by day; whatever it takes to ensure improved health.

Thanks for checking in,

Don

Friday, February 18, 2005 9:58 AM CST

Good Morning,

We made it back from CT safe and sound and all of the results where normal. Sarah kind of enjoyed her venture out of the room. Her first one in 18 days, and the CT people brought her a heated blanket which was very cozy.

Infectious diseases got involved because Sarah is still running fevers although they seem to be further in between and not as high. The doctors put her on another anti-fungal anti-biotic called Caspofungin Acetate.

Last night was another restful night. Sarah platelet check at 4pm showed that she had used all of the platelets she got at 7am, so Sarah received another platelet transfusion at 7pm. There was no visible blood in her urine. I think that really made a difference. The doctors said that the platlet production by the bone marrow is the last thing to kick in.

SARAH'S LABS CAME BACK AND HER LATEST NUMBERS CONTINUE TO IMPROVE. YESTERDAY'S ANC WAS 102, I WAS HOPING FOR 350 TODAY BUT IT WAS 520 !!!! THAT IS ABSOLUTELY WONDERFULL. Her platelet levels were again very low so Sarah will get platelet transfusions twice daily until her production step up. This makes a huge difference for Sarah but it also means that she gets medicated more. Before each transfusion Sarah gets benadryl to help with any reaction she might have. The benadryl really knocks her out so she spends most of the day sleeping.

Thanks for Checking in,

Don

Thursday, February 17, 2005 1:07 PM CST

Hello Everyone,

First and foremost, Sarah has an ANC (absolute neutrophile count) of 102!!!!!! This is very exciting news. The ANC is one of the indicators used to decide how well her immune system is doing. Yesterday and the day before her ANC was O. All of Sarah's other numbers are doing pretty well.

Last night was mostly a quiet one. We both slept fairly well. Early this morning Sarah had blood in her urine and feces. They are doing tests to see if there are any viral infections which is causing this to happen. Sarah is also using up the daily platlet transfusions at a pretty good pace. The platlets help with clotting and other functions of the blood. It is possible that the very low platlet levels she is running through the night may be the cause. The doctors are going to check her platlet levels again at 4pm and she made need another transfusion.

We are awaiting a trip to have a CT scan done on Sarah's chest and sinuses. I not to thrilled about removing her from her little coccoon we have made her. She will have to wear a mask, which she hates, and hopefull the whole process goes fairly smooth.

In the mean time we will be riding this rollercoaster of improving health and hope that everything starts getting back to "normal".

Thanks for Checking in and
continue to pray for Sarah!!,

Don

Wednesday, February 16, 2005 4:00 AM CST

Hi,
Things in transplant can go so unpredictible. All Sarah did yesturday was sleep. She was in more pain in her throat. The Dr.'s think it is the mucusitis. She has been running fevers. She did get a dose of platelets and thankfully she did not react. Then last night she started having low blood pressures again. They gave her albumin which is in our blood normally. It did help bring them up some. Now they are starting to come down again. She has a fever and her breathing is shallow. I have been awake all night watching her and making sure she is ok. She looks puffy in the face, like she is retaining fluids. I am going to call Don this morning and have him come to help Sarah and me. I need my best friend for support. I feel tired and then I panic easily. This doesn't help Sarah. I get scared because Sarah's condition changes so often. She is not out of the woods yet. Please pray for her today.
Jackie

Tuesday, February 15, 2005 3:20 PM CST

Hello everyone,
Sarah is doing well. Over the weekend we had a scare. Her blood pressures were low and the Dr.'s were talking about putting her in the ICU. But Sarah pulled out of it and she didn't have to go. Thank you for your prayers. She has had fevers, some high. Yet still she has no evidence of infections. Last night she had a reaction to the platelet transfusion and that scared me. In the BIG picture of things Sarah is doing well. We feel blessed. We thank you all so much for your concerns and prayers as again, Sarah is doing well. Today she is very tired and is sleeping. Her labs came back with a .9 WBC!! This is awesome! Sarah's cells have grafted and she is on her way to healing. Her kidney test shows that they are stable. Thank you all for your prayers, mail, calls, and emails. You all mean so much to us.
Jackie

God Bless Emma and her family

Tuesday, February 15, 2005 1:09 PM CST

I write this with a heavy heart. Our friend, Emma, is on her way home as I type. Her lungs are broke and there is no cure. Emma told her parents she wanted to go home and her parents gave her that gift. Hospice will be waiting when they arrive. Emma will be 6 years old March 13th. Her family are the most amazing people. I will miss talking with Rae and having a friendly, familiar smile here at the hospital. God bless them.
Jackie

Monday, February 14, 2005 2:18 PM CST

Happy Valentines Day!

Today Sarah had to have platelets and she had a reaction. She had chills like I have never witnessed. She began a high fever and was throwing up blood clots and stuff I will leave to your imagination. I was worried that something was going wrong so I called Don to come back to the hospital and be with me. Sarah came through everything and I was a wreck! Don stayed and let me freak out and cry for awhile. Then nurse Megan came on shift. Don felt I and Sarah were in good hands:) Now Sarah is alert and feeling good. She wants to play Scene It? game tonight with Megan. I am starting to breathe a little:)

We have a dear friend, Emma, that is here. She is an adorable little girl who is fighting for her life. She has GVH disease. This is caused from a bone marrow transplant from using a donor. The good news is that the cancer is gone but then Graft Vs Host disease happens. It is in her lungs. She was placed in the ICU last night and her family have many decisions to make. The kind of decisions that a parent NEVER wants to think about. Please keep Emma in your prayers and her family. A miracle needs to happen.
Jackie

Saturday, February 12, 2005 9:15 AM CST

Hello--day 5!
Sarah has been running fevers anywhere from 99-104 degrees. Her pain and mucusitis is better. She is drinking more again. I came home yesturday to be with Catie and Don is up with Sarah. Last night her blood pressure was low, 88/35. So they gave her a bolus of fluid to see if it would help. It did. Her pressures stablized. This morning it dipped into the 30's again. So once more they gave her a bolus. The numbers are rising. Her red blood cells are low, so she will get another blood transfusion today. This should also help with the pressures. Sarah had our favorite night nurse, Megan, last night. I felt good knowing that Megan was there taking care of her. I even talked with Megan when I called Don. I wanted her to reasure me that Sarah was ok. I know Megan kept a close eye on her and that made me feel better. Megan works again tonight, thank God!:) I wish the fevers would go away. It seems they are her only problem right now. We are reasured that fevers are normal during this time. I hate to see Sarah lay there in her fetal position shaking with the chills. It is so HARD to see your child really sick! I am feeling so torn because I want to be with Sarah right now. Even though there is nothing I can do that Don already is doing. I just want to see her and then it gives me some sort of control of the situation. And then on then other hand, Catie really wants me here. And I want to be here for her. We had a great evening together. We met my brother and his family for dinner. Catie did not complain of her tummy hurting or feeling pukey once. This morning she tells me I am a great babysitter. I guess that is a compliment:)

Don just called. Sarah is getting her blood product right now. This will help with her pressures. The Dr.'s are thinking about scanning Sarah (CT scan) just to make sure all is well giving that she has fevers. Her Blood cultures are taken everyday and nothing has grown out. This is great! Her lab report came back from today: her kidneys are hanging in there, stable. Her electrolytes are off some. They mix her electrolytes in her in TNA. She will need a potassium transfusion as that is low. Her electrolytes are off because she is not eating. The labs also showed Sarah to have a .3 white blood count. Last night it showed a .4! Don asked the nurse today what she makes of it and she thought maybe she had grafted already and her body was making WBC. Her mouth is looking better and that is an indication of healing. The oncologist has not come in yet, but I asked Don to get her perspective. This would be the best news but I am trying to not get too excited incase it is wrong. Please keep Sarah in your prayers that she is healing and that the fevers go away, soon preferably:) Thank you for checking in on Sarah.
Jackie

Thursday, February 10, 2005 2:32 PM CST

Here is day 2. And the effects of lethal dose chemo and transplant are present. Sarah is throwing up blood and mucusitis, fevers are present most of the day, she is on oxygen because the mucusitis is sitting in her throat and all you can hear is the bubbly, rattly sound it makes as she tries to breathe, her bottome is sore and "suffering." She needs a platelet transfusion today. This prevents bleeding and bruising. She sleeps and pushes the morphine button. She is so doped up from morphine that every once in awhile I will hear her start to laugh or talk in her sleep. Her latest was how she was going to play the game battleship with Catie in her sleep. When I ask her who is going to win, she smiles a very cheesy smile and says me:)

I am worried about Catie as she misses me and has tummy aches. She was up most of last night upset and pukey with Don. I felt terrible that I wasn't there. I need to be in two places and it just isn't happening.

The Dr. came in today to say that this is the start of her feeling her worst. It can last 7-14 days:( AHHH!!! I wish it was day 30 instead of day 2. I pray that everything work out and we are home together soon.
Jackie

Wednesday, February 9, 2005 4:59 PM CST

Well, we are at day 1! That means only 99 to go until Sarah is out of isolation. As soon as her counts start to come up to a safe level, she will go home. This could be as soon as the end of February. But then the rest of isolation will be in our home. Sarah is quite the little shopper, so she will have a hard time staying away from the stores:)

Today went well. She is very tired. But she is cooperative and in good spirits. She continues to drink but does not eat because it is too hard to swallow. She has a lot of phlem that is peeling off of the inside of her mouth and throat. So when she eats it gets "stuck." We are thankful that she will drink water because it allows this stuff to escape from the other end. Her numbers are stable. Tonight she will get a blood transfusion, potassium, phospherous drip and she will start TNA. This is the liquid food. She is on her morhine PCA but only uses it once or twice a day, so far. Tonight should be a quiet night. She will get benedryl for the pre-medications for transfusion and it will knock her out. She has been talking in her sleep a lot. It is funny to hear what she is saying.:)

Thanks for checking in on Sarah. Thank you for your prayers. I know I say it a lot but we appreciate you all very much.
Jackie

Tuesday, February 8, 2005 3:36 PM CST

Hi everyone,
Transplant is just finishing up! Sarah did great!!! There were no problems! Praise God! She played gameboy, watched the Princess sing along DVD and just visited with us. God granted Sarah another miracle, a new beginning! This is such a wonderful, emotional time. Catie came up today with me and we all stayed together. Catie even joined in with Sarah during her physical therapy.

Thank you for checking in with us, prayers and support. Her kidney creatinine levels have maintained, which is awesome.:) Please, Please continue to pray for Sarah as we are seeing the power of your prayers:)

Jackie

Now that Sarah's transplant is finished, the waiting begins. It should take anywhere from 7 to 14 days for Sarah's white blood and ANC numbers to come up. During this time it remains critical that Sarah not contract and infections. The antibiotics are continuing as a safety net. Sarah has not spiked any type of fever since around 4am. And that spike was high enough to have another culture drawn but was still pretty low 100.4 F. Don

Monday, February 7, 2005 3:19 PM CST

Today has been another pretty slow day. Sarah has had an increase in pain from her mucisitis and has opted to start her PCA. This device will administer a base rate of morphine and allow her to get more as needed by pushing a button.

All of her labs look pretty much as expected. She did spike a slight fever yesterday. Cultures were immediately taken and three different antibiotics were started. Two of the antibiotics are harmful to her kidney function but are needed to insure that Sarah does not get any infections. One of Sarah's labs that track her kidney function was slightly elevated. The doctors will be keeping a close watch on this. The most important thing is to control any possibility of infection. So far the cultures have come back negative and Sarah has only ran very mild temperature this morning. Please pray that the cultures continue to come back negative so that Sarah can be taken off some of the antibiotics!!!

Tomorrow at 1pm is the officil transplant. Once her cells are put back in her it should take 7 to 14 days for her counts to start comming back. In the meantime, the mouthsores will continue and the possibility of infection will remain elevated.

Sarah and our whole family is looking forward to being done with all of this and getting the scary and worisome times behind. It is a very helpless feeling to watch your child go through this whether you are at the hopital or at home. I don't know how anyone could do this without faith.

Please continue to pray and help get Sarah trough this.

Don

Sunday, February 6, 2005 2:52 PM CST

Hello Everyone,

Today has been a fairly slow day. Sarah has been feeling better. The major difference is that she is very sleepy. She has been drinking pretty well today but has not had much of an appetite. When Sarah spoke with Jackie earlier, she said she wanted some tombstone pizza. I haven't seen the doctors yet today but if they say she can have pizza then we'll grab some.

Sarah has taken alot of reponsibility for her well being. She is making very careful decisions about when she takes her nausea and pain medication.

All things considered, I think that Sarah is doing great. She really is an amazingly strong girl. I am enjoying the one-on-one time with both Sarah and Catie, Although I would give anything to have it be under different circumstances. It also doesn't leave much room in the schedule for time between Jackie and I. I am glad that we have built a strong relationship over the past 14 years.

Sarah is sleeping now. She said she wants to rest up so that she can watch the Simpsons episode after the Superbowl.

I want to thank everyone for keeping Sarah and our whole family in your thoughts and prayers.

Don

Saturday, February 5, 2005 6:04 PM CST

Howdy Everybody,

Sarah finished up with CHEMO at 11am today....hooray!! Needless to say, Sarah is very excited about being done. The mouth sores have officially started. Sarah is very adamant about keeping up with her mouth care so that the sores don't get worse. We're hoping that the weekend is uneventful. Please continue to keep Sarah in your prayers as the time for transplant draws near.

Don

Friday, February 4, 2005 11:40 AM CST

Good morning,
Sarah put in a good night. She slept through thanks to benedryl medicine. They give that to children to help with nausea and it makes Sarah sleep. This morning she woke up saying her mouth and throat hurt a little bit. I am afraid the mucisitus is starting.:( This bothers her a lot, she hoped she would not get them. Her eating has stopped. And her drinking water has decreased a lot. A few sips here and there.

Tonight Don is coming to stay. I am feeling bad about leaving. She is starting to feel sick and I want to be here. Sarah said," who is going to rub lotion on my legs when you're gone?" I know she will enjoy doing things with Don. It will be a nice change. When he comes up they play on the computer, a game called Zoo Tycoon. They make their own zoo and take care of the animals. They also play x-box and game boy games. It will be nice for her.

Tuesday is the transplant. I think at 10:30 am. We will find out more on Monday. Thank you for your prayers. We are starting to get to the scarey time when infections and organ problems could happen. This scares me to death. Please, please keep Sarah in your prayers. Along with the other children up here fighting for their life. Thank you,
Jackie

Thursday, February 3, 2005 7:28 PM CST

Howdy,
Today went well. But there is a change in Sarah's mood. Her eating has really slowed down to just a few bites of chex mix. She is still drinking some water. Nausea has set in. The medicines they give her are starting to upset her tummy along with the chemo. effects. She feels bad that she is starting to feel crummy already. Catie is having a hard time missing Sarah and me. And Sarah misses Don and Catie. Ah, we knew things would get bad but I was hoping we would have more good days. The Dr.'s came into our room and are pleased with Sarah's progress. She is right on track where the "normal" is. And I found out that tomorrow is NOT her last day of chemo. Saturday at 10:30am it will end. Don is coming up tomorrow after work with Catie. Catie and I will be going home for the weekend. I hope tonight goes well for Sarah and she rests. Thanks for the support and for the guestbook entries.
Jackie

Thursday, February 3, 2005 8:47 AM CST

Hello,
Don and Catie came up last night and when they left, everyone had a hard time. It took Sarah a long time to calm down. I distracted her in another game of Disney Scene It. She took all her medications (about 5) one after another and then felt sick to her tummy. She had a good night sleeping, we were so tired. The pump kept going off because of air in the line, but after awhile I didn't even hear it. Today is the last day for one of her chemo's! It is a drug that can leak through your skin, that is why I bathe her so much. Otherwise she could burn. But her skin is fine. Tomorrow is the last day of her chemo. This should be for THE REST OF HER LIFE!

Sarah is still in good spirits and feeling well. She woke up this morning and said, Morning momma, I love you. Today will be a good day:)
Jackie

Wednesday, February 2, 2005 10:32 AM CST

Hi,
Last night went well. Sarah just had to piddle a lot with the chemo she is on. Our favorite night nurse, Megan, played games with us and visited for awhile. Sarah and I cuddled until late watching the Princess sing a long DVD. This morning she was excited to have one of her favorite morning nurse, Tracy. She had a good breakfast and is drinking water. Things are going well. Don and Catie are coming up tonight to say Hi and have dinner with us. Thnak you for checking on Sarah and for all the prayers. You don't know how much it means to us.:)
Jackie

PS. Our friend, Ben, came through surgery well and he is recovering. Please check on his site and say Hi.

Tuesday, February 1, 2005 7:22 PM CST

Chemo started today at 10:30. Sarah had a very busy day meeting with OT, PT and psychology. She started her bathing and mouth care. Sarah is in great spirits! She is feeling good and eating well. We are going to play Disney Scene It? tonight with the nurses. She even scrapbooked a little bit. I know things will get "harder" but today went well. And we will take it!:)
Jackie

Monday, January 31, 2005 4:09 PM CST

We're here!
We made it to the hospital around 11am. Our van was loaded full. As I was doing the last check, I started to cry and fear if we were doing the right thing. The girls were out in the van, playing their gameboys waiting. Sarah had no problem, it was just me.:) We drove by our friend Lori's house and there was a HUGE sign that read, PRAY FOR SARAH! Don and I started balling. It was the most beautiful, heartwarming gesture. Once we arrived at the hospital, we found out that we had the BIG room. That was nice because we have so much stuff:)

Sarah had a chest x-ray, met with occupational therapy, decorated her room and just started hydration. She is in good spirits. We are covered with princessess and flowers. Although there is a Lindsey Lohan poster up. Tomorrow starts the chemo. It also starts the protocol of washing and bathing, etc. Tonight is more of just moving in and getting the paper work done. At the bottom of our page has our new address and phone number. Thank you all for the prayers and for the guest book entries. Sarah's teacher gave us a map of the world so we could plot where everyone was from.( good idea Christine:) Thank you all again, Jackie

Wednesday, January 26, 2005 7:51 PM CST

Today Don and I had our transplant meeting. The girls stayed in school and then went home with Sarah's teacher. Thank you Leigh Ann and Jeff!! I was glad that Sarah and Catie were not there. The meeting took about 2 hours. On the way up to Madison, Don and I were able to talk about our choices. I shed some tears on the way there and by the time of our meeting, I felt I was ready to hear all the risks. The meeting went well. We were able to ask a lot of questions and the tone was positive. Of course, we heard some scarey risks and possible outcomes. But we also heard that even though Sarah has relapsed she does not fit the "usual" relapse. Her relapse tumor was well behaved and the Dr. said that is very unusual for neuroblasotma. She relpased but she never has received the stem cell transplant, so he feels she still has a good chance for cure. He said that prognoses becomes poor when the child has transplant and radiation, and yet still relapses. We came home with the consent papers to re-read and sign and bring them back next week.

We did discuss just doing radiation. He said that we could do that and wait and see what happens. It may never come back. On the other hand it might come back and not react so well behaved. So, the group of oncologists feel that Sarah would far benefit going through both transplant and radiation.

I really don't feel like writing all the risks or explaining all the precautions. They can be overwhelming:) At the hospital and at home we are to make sure we wash our hands and make sure everybody that goes near Sarah washes their hands. We are going to bathe Sarah at least once a day, clean her mouth at least 4 times a day and limit visitors to the 3 of us. This will help with prevention of infections.

This weekend we are spending some quality family time together. No real plans are made yet. So, the plan is for Sarah to move in on Monday the 31st. She will start chemo Tuesday. It will last for a total of 4 days. On Monday the 7th she will be transplanted with her own stem cells. We will wait for the cells to graft. It will probably take a couple of weeks. During this period Sarah will be at her most sick. Then, after the cells graft, her blood counts begin to rise and she can safely come home.(to be in home isolation) Many of you have asked what you can do to help us. Please,please, continue to pray for Sarah during this. We know that prayers will carry her through. Thank you,
Jackie

*****Thursday the 27th*******
I can not thank you all enough for all the wonderful words of encouragement for Sarah on todays guestbook entries. You all have brought tears to my eyes and have helped us in ways you will never know. Thank you and God bless!

Tuesday, January 25, 2005 8:12 PM CST

Well...
We are moving in! Her kidneys recovered to a score of 73. It was a long day but we were in good spirits. I had requested the Dr. call me on our cell phone to let me know what her score was. I couldn't wait until tomorrow. When he called me, he was pleasantly happy and was thankful that her score was not 59 or 62(remember she needed to be over 60). Although, when he called me, it took me awhile to let it sink in. I am thankful the answer was made for us and that we didn't have to think of other choices. We are ready, I think:) Seriously, we all want to move on and put it beind us. Our primary Dr. is excited that Sarah, even though has relapsed, will get to undergo her transplant and get her radiation that she should have received the first time. He said to me today that she does not have any evidence of disease in her. She is going in healthy. With Sarah being a stage 3 first diagnoses, and getting to complete her treatments, she has a very good statistic for cure. Her relapse was so well behaved. There are a lot of blessings to be thankful for. Sometimes I forget:) Tomorrow Don and I are going to talk to the transplant Dr. to hear the good, bad and ugly of transplant. I think we move in on Monday the 31st. We will find that out tomorrow for sure. At least we have a plan. Thank you all for your prayers. Please keep them coming during this exciting yet scarey time. Oh how I pray for smooth sailing:)
Jackie

Thursday, January 20, 2005 4:21 PM CST

Hello there,
Well, we have good news and no news. The good news is that Sarah's scans show no evidence of disease! She is still cancer free:)

The other news is that today was a waste. Sarah's central line didn't work and we could not do her kidney test. And with no test result, there was no consent meeting. Now the new plan is for Sarah to come back on Tuesday the 25th. She will get a medicine in her lines to help make it work, called TPA. Then she will have the kidney test. If the test score is good, the consent meeting is Wednesday and she moves in on Thursday. But the Dr. is talking about having her lined replaced if the score is good so that we don't have to worry about it during the transplant. So, I am not sure if that will happen or not. We also found out that if Sarah's score is low the transplant Dr. is not going to mess with it any longer. She will not get it. We move to plan B, which is radiation and accutane medicine. And it won't matter if her line is working because she will have it pulled. Even though there are two plans, Don and I made a third. If Sarah does not pass, do we agree with the transplant Dr. and forget it or do we find a Dr. and hospital that will transplant her cells? There are a lot of unknown questions and things to think about. But really we won't know anything until Tuesday. Until then, we only speculate.

For now, we are to all stay healthy, no colds or flu so that when Sarah is ready to transplant we are ready too. I count our blessings that Sarah is feeling good and is cancer free. I know she is healing and she is mentally preparing for transplant and this time was not a waste for her. Please pray for our upcoming decisions. I pray that God takes care of it so we don't have a million decisions to think of. I like to see things black or white, it's the gray area that stinks.:) So, for now that is about it. Please keep our friend, Ben, and his family in your prayers. Next Tuesday he is to have surgery on his tumor and it is located inside his kidney. Check out his site on the bottom of our screen and log on to say "Hi" He likes to hear jokes. Thank you everyone for your support and prayers.
Jackie

Sunday, January 9, 2005 5:19 PM CST

Things are going well. Sarah and I had a great time at the museum for her fieldtrip. I told a friend that it was the first time since she has relapsed that I didn't think about her illness or the upcoming events. We both had a good time. The next day we had a snow day from school. It was wonderful! I know we have missed a "few" days from school but there is nothing like a snow day. The girls went out to play and sled with the neighbors. Our wonderful neighbor snow plowed us out.:) Friday night we started celebrating Don's 40th birthday. We met with his family for dinner. Saturday we met with my brother and his family. The day started out sledding at a hill that Don and I used to sled when we were kids. We had great memories there and we were tickled that we could take our children there. Tomorrow Don really turns 40, so the girls and I are taking him out to dinner and spending some quality time together. Right now he is having a heart attack because the Green Bay Packers are losing to the dreded Vikings. I hear a lot of yelling at the TV.:)

Sarah is to go back to the hospital on the 19th for a CT of her abdomen. Then she goes back on the 20th for the GFR kidney test. That afternoon Don and I are to meet with the transplant Dr. for the informed consent meeting. Then on the 24th Sarah is to move in. We will see....But for right now, Sarah is feeling good, things are back to normal, she is in school(all day), making plans with her firends, Life is good. Thank you for checking in on us and for praying for Sarah. She has been on a kick of singing,"Angels Among Us" lately. When we are in the car she wants me to replay the song over and over. It just brings tears to my eyes hearing her and Catie belt it out!
Thanks again,
Jackie

Tuesday, January 4, 2005 8:18 PM CST

What a LONG day at the hospital. All four of us went up last night to spend the night in Madison. Sarah had to be there at 7:30 this morning. I couldn't sleep last night. I was up at 4:00 am and just decided to get ready and go somewhere quiet in the hotel and "think" and pray. The kidney test was complete by 2pm and as we were leaving the hospital, my cell phone rang. It was the results. A score of 48! (well as you know we needed a 60 or better) I didn't panic, I thought, whatever happens is meant to be. It is out of my hands. As we left the car ramp, the phone rang and it was our Dr. He wanted to meet with Don and I if we had time. So we went back up to meet with him. He was not to surprised with the result. But the good news is that the number or score is getting higher. With Sarah's kidney's, it takes longer for them to recover from chemo. So the plan is to come back next week for a CT of her abdomen (it's her 3 month check up already) and then redo another GFR kidney test the end of this month and see what the score is. Our Dr. is optimistic that her score will be normal. If her score is not good, either we wait a couple more weeks and try again or we go off and do radiation. Don, I and the Dr. had a very good talk tonight. It was upbeat and full of hope. We feel good that we will probably still do transplant, and our Dr. feels that procedure is going to give her the best chance for cure. I asked about what we should do now while we are waiting. He said nothing, she is in remission! Once we get the right, safest score, she is off to transplant. Sarah feels good about this because she will be in school a few more weeks with her friends.

Tomorrow Sarah and I are going on the class fieldtrip to Milwaukee public museum. It is a great place to visit. Thank you for your prayers. Please keep them coming!
Jackie

Thursday, December 30, 2004 11:47 AM CST

Things are going ok. I have been ill for the past couple days. I am off to the Dr.'s today. I called UW to find out Sarah's GFR kidney report from yesturday. She scored a 41. (anything below a 60, we can't do stem cell) The nurse was floored! Because of the holidays, the Dr. is not in until Monday. She called the Dr. at home and they want Sarah to redo the GFR next week, Tuesday. Her last GFR was a 80. There is a big difference between 80 and 41! Now we wait....I don't know what to think. I put it in God's hands because there is nothing I can do. This is sure one of the biggest tests of faith I have had lately:)

Sarah and the rest of the family is doing great. Please, pray for Sarah and what will happen with the transplant. Thank you so much
Jackie

Monday, December 27, 2004 4:33 PM CST

Hi,
Things are going well. Christmas Eve was spent with my brother and his family. We had a nice evening watching the Packers win!! The girls were so excited about Santa coming. It was magical. Sarah kept saying, I can't fall asleep. Catie kept yelling out to the living room, did he come yet? It was fun. Christmas morning the girls jumped out of bed to open gifts. It didn't seem real that Sarah had just come out of the hospital. We went to Grandma Hunter's for lunch and then up to my mom's for dinner. It was great all being together. My mom is doing better. She is still sleepy but she looks a lot better. On Sunday we went for lunch at a restaurant for my grandmother's christmas. There must have been 60 of us. Cousins and relatives I haven't seen in a long time. It was great. We played games, sung Christmas carols and even had a raffle for a quilt that grandma made. We were one of the last ones to leave. The girls had a fun time playing with all the kids. It reminded me of the good times of Christmas's past. During the prayer before the meal, my uncle David, mentioned special blessings on Sarah, tears fell down my face as I realized for a brief moment that she has to indure more treatments.

Tuesday and Wednesday Sarah will have tests at the hospital to see if she is capable for stem cell transplant. They include: a lung test, kidney test, hearing and psychological. Things are going normal and we are blessed to be together.

Thank you for the kind thoughts and prayers sent our way. We appreciate them very much.
Jackie

Thursday, December 23, 2004 10:14 PM CST

Sarah finished collecting stem cells today. She had a platelet transfusion and some potassium. She did well. Yesturday she collected 1.88 and we are hoping that she did the same today. We will add them to her past collection. We should have just over 5 (million?) cells. This is great news. If we couldn't have done this procedure, Sarah would have gone in to have a bone marrow harvest. This is done in the OR through her hip bones. The Dr. said that research has shown that stem cells taken like the way Sarah's were, tend to graft quicker than if we were to have done a harvest. So, I guess it all worked out for the best.

We are all home together tonight! We are excited for Christmas and spending time together. Sarah is due back to the hospital on Tuesday and Wednesday for tests. She will be able to go home each night. Then she will move in on Jan.10th for the transplant. BUT, we won't worry about that now.:)

We wish everyone a Blessed and Healthy christmas. Please keep all our friends in your prayers, especially Emma, Torrey, Micaela, Emily, Ben, Justin, Parker, Carly, Ashlee.
Merry Christmas!!
Jackie

Wednesday, December 22, 2004 4:37 PM CST

Today we are back in the hospital. We drove to Madison to have her counts taken and her CD#34 was actually 7. Monday her CD#34 was 1. This # calculates stem cell mobilization. So, we are in the childrens ICU. We hope to be home tomorrow night. Sarah is very unhappy that we are here. She had a temparary femur line placed in her groin. Otherwise all is well. I hope to be home by Christmas Eve.:)
Jackie

Monday, December 20, 2004 8:41 PM CST

We are home! We walked in the door around 7:30pm.

Sarah's stem cell harvest didn't happen today. Her stem cells didn't mobilize like they should. We are going back on Wednesday morning to see if they are. It is a simple blood test to check. The Dr. and myself are not too optimistic that they will be moving any faster. But, it is worth the check. If they are not high enough, we will schedule a bone marrow harvest after the holidays in the Operating Room. It is the old fasioned way of collection. It is painful. But we will forsure collect enough stem cells.

Today we had the kidney Dr.'s come in and check Sarah out. We want them to be aware of Sarah's condition and what is going to be happening to her. Even they said that she should go ahead with the transplant and we will worry about the kidneys later, if need be. We are going to do some baseline kidney tests in the next couple of weeks so they know how she is functioning before stem cell transplant.

Sarah is tired! She is asleep on the couch right now. We drove around town tonight and looked at the Christmas lights. It is kind have a tradition. I have to make sure that she drinks and starts eating. She was very upset today because her hair has fallen out in clumps. There are still a few clumps left but she wants them to fall out on their own. We have come home with an IV pole and an antibiotic to give to her until Wed. We still have to give her this shot until Wed. We are glad to be home but I feel drained. There is so much to unpack, wash, get done for this week. Today was a day of many Dr.'s coming in to check Sarah. It was overwhelming. From 2-4pm Dr.'s, nurses, etc. came in about every 5 minutes. It got to be a joke. Oh well, we are home for now.

On a sad note, there was a girl that was just admitted next door to us with a brain tumor. Her parents had that look of deer caught in the headlights. Then when they saw Sarah and her hair, the mom just started crying. I smiled knowing I did the same thing 3 years ago. Then I looked at Sarah's shirt that she was wearing...It was her orange SURVIVOR shirt from Relay. Then I started to cry. She will survive this again.
Jackie

Saturday, December 18, 2004 0:16 AM CST

Hi all,
My mom has survivied her 7 hour surgery. The Dr. was able to clip the aneryism. (I know I am spelling that wrong) She was moved out of ICU today and is very sleepy. The Dr.'s are happy with her progress. Her room is actually down the hall and through a couple of doors from Sarah. It actually is easy to check on them.

Today Sarah's Dr. came in and said she should go home. She is due back on Monday for her stem cell collection and he felt she needed a break. Don and I disagreed and said maybe tomorrow. Sarah is on pain medicine, hasn't ate anything since last weekend, hasn't stooled, doesn't drink because of her mouth hurting...I don't think so! Sarah had another fever and that was answer enough, she couldn't go. Yes, we could manage her with pain medicine and anti-nausea meds at home. But her WBC counts have just started rising. Today they are 225 and yesturday they were 37. When they hit 500 she will be considered safe. Then, we will think about discharge. Sarah will have her blood taken on Monday morning. If there are enough stem cells detected, she will have the collection. If not, we go home and try again the next day. Sarah is to be back on the 28th and 29th for tests. She will be able to go home after the tests each night. These tests will consist of lung test, kidney test, psychological test, hearing and vision and an echo. On January 10th(Don's 40th birthday) Sarah will be admitted for her long stay of stem cell transplant.

This has been a long, hard week. It is a reality of what stem cell is going to be like. Sarah had terrible sores. She couldn't eat or drink. She was on morphine for a couple of days but switched to dilauted because morphine makes her very moody, gives her headaches, hallucinates, itches and picks at her skin. She has received platelets and red blood cells. She has had fevers. Sarah is shedding like crazy yet she will not cut her hair. The past few nights she has been on oxygen because the pain medicine and low red blood cells have caused a decrease in her oxygen level. She would sleep most of the day because she was so drugged to keep her comfortable. We have been lucky this time because she hasn't become depressed. She has little strength and wants me to cuddle and hold her. I look down at her and ask God, why? I beg and ask God to help Sarah. I just don't want her to be in pain. I don't like to see her suffer. She was so full of life and loved everything about her day. I was so happy that she was done with all her pain and treatments from last time. Life was begining to become normal. When we found out that this was cancer again, my heart broke knowing what Sarah would have to go through again. She is 8 years old. She wants to be a kid. I am sorry, I just got home tonight around 11pm. I stayed to make sure my mom and Sarah were doing ok. Sarah was having a tough time tonight with headaches and affects from pain medicine. Catie was staying with Don and Sarah while I was with my mom. Tonight I gave Catie a bath at the hospital and was going to settle her in to bed, and then I would go home. Catie started crying and wanted to come home with me. So, I packed her up and brought her with. We will go back tomorrow. I pray all is well and that tomorrow will be a better day.

I just wanted to mention that Sarah and Catie did receive their prayer quilts today, thank you Ms. Peterson!

Thank you for listening. It has been a couple of numb days and now I am starting to melt down:)
Jackie

Home address:
W5859 Hedrick Drive
Fort Atkinson, WI 53538

Thursday, December 16, 2004 10:52 AM CST

Let's see....
Sarah has a very bad case of mouth sores. She is on a PCA, pain control pump. She has just started drinking water last night. Her tongue looks like someone took a razor blade and gouged out the sides, there is white film on her cheecks and tongue and down her throat. She was on oxygen because her oxygen levels were low due to being on pain medicine, morhine. She has had a platelet and red blood transfusion. Her hair is really starting to fall out. She is thankful her hair is thick because it just looks really thin now.

My mom is here having her surgery for her anerysism(?) right now as I type. Sarah is having a better day. She looks cheery and is smiling her pretty smile:) She was hungry and asked to drink water this morning.

I have to go check on my mom's progress, I'll type later.
Jackie

Sunday, December 12, 2004 9:52 AM CST

Sarah is still at the hospital. Her white blood count is very low and she is in mini-isolation. She can leave her room wearing a mask, but there are only certain areas that she is allowed to go. We are taking all precautions; washing hands, no visitors. Sarah is on morphine for the pain. Today we are going to lower the dose and see how she is doing. The morphine helps the pain but makes her tired, gives her a headache, makes her grouchy. It is a fine line.

Last night Don stayed with the girls for a sleepover. Instead of me going to the Ronald McDonald house, I came home to wrap Christmas presents. I also watched the school Holiday concert on our local cable tv station. It was so cute seeing Catie. By the time the 2nd grade started singing Holly Jolly christmas, I was crying so bad I had to turn the channel. I know there is next year! It was hard because Sarah was excited to sing with her friends. She would practice ALL the time around the house. The girls would go downstairs and sing in their Barbie Kareoke machine.:)

Catie had a nice time for her birthday. The nurses all sang Happy Birthday to her at the nurse station. Then because Sarah was sleeping most of the evening, Catie went out by the nurses and sat behind the desk with them and talk and do whatever. Sometimes they even do chair rides. They take a chair with wheels and give eachother rides down the short hallway. This is done late at night, and the girls love it. Sarah hasn't rode the chair yet, but she likes to pole surf. She climbs on the foot of her pole and someone pulls her. We try to have some excitment.:)

Anyway, things are going ok. Sarah should start to rebound this week and then we will collect her stem cells and freeze them to further notice. Tuesday she is going to have another GFR kidney test to make sure all is well. Thank you for checking in with Sarah and us. Thank you for the prayers and best wishes.
Jackie

Friday, December 10, 2004 6:51 PM CST

I couldn't get Sarah's line to work today to draw blood so Don took her to UW to have them try. While she was there her tempurature was 100.4 so they checked her in. They started her on an antibiotic and drew cultures from her line to make sure there was no infection. Sarah was very uncomfortable at home in pain with mouth sores. At UW they started her on morphine for pain. She is more comfortable and was starting to rest when I last called. Tomorrow is Catie's birthday, so tonight we had some mom and daughter time. Tomorrow we will go up to UW and bring a cake and her presents. We will make the day special. Sarah is sad that she is back to UW. Her lab report shows that she is at her low point. I just pray that she recovers quickly. At the point were she is turning the corner, she will have her stem cells harvested. It would be so nice to have it all work out next week so she is home for the holidays and feeling good. Don told me tonight that they are out on the main floor instead of the cancer area because it was full. It is sad that it is full. My heart breaks for all the families.

I forgot to mention the 2nd opinion I received about Sarah and transplant. I called a Dr. in New York at a huge hospital, Sloan Kettering. I didn't get past the receptionist. She wanted to know Sarah's social security number, insurance info., paperwork from our Dr. etc. I said, " I just have one question." She said I could make an appointment. Feeling low, I didn't know how to go about a 2nd opinion. Tuesday night, when Sarah and I got home, I went on the computer. I went on St.Judes web site. I found information on the transplant Dr., who is in charge of autogolus stem cell transplants and solid tumors. (Sarah's case) In his information there was his phone number and address. Also an email was listed. I figured what the heck. I wrote him about Sarah, giving him her information and asking what he thinks and has he ever done a transplant on someone with polysytic kidneys. The very next morning there was an apply! He said that he never has but that there are reports of successful transplants on children with no kidneys from Wilm's cancer. He said he would be happy to help me out on that information. He also said that it was his opinion that Sarah go through the stem cell tranplant because her cancer would probably come back without it. He said people can live with renal failure because there is dialysis, but people can not live with cancer. This is what our Dr. said to us. I thought it was wonderful of the St. Jude's Dr. to actually write back. He wished us the best and if we had anymore questions, just ask.

Well anyway, we will be at the hospital. My mom is going up on Wednesday for her surgery on Thursday. She is soooo nervous. My brother and I will be there with her. Heck, I might be there with Sarah too! Please continue with your prayers as they are much needed:) I feel so helpless during this time. Thank you all for your concerns.
Jackie

Thursday, December 9, 2004 8:54 PM CST

The mouth sores have arrived:( Sarah's throat hurts and she is in pain. I had to give her a shot tonight in her leg, called GCSF. It helps grow white blood cells. I am kind have surprised that the sores have come so fast. Usually Sarah would have a few good days before they appear. I am hopeful that it means they will go away faster. She felt bad tonight so she didn't go to her Holiday concert. Catie went with Don and they had a great time. I am hoping Sarah feels better quick. I hate to see her in pain and feeling sad. It breaks my heart when she says," why does my life have to be so difficult." I don't know why.
Love, Jackie

Wednesday, December 8, 2004 10:35 AM CST

We made it home last night. Sarah was doing great. During the night she felt pukey, so I gave her some anti-nausea medication. She had a nightmare about the Grinch who stole Christmas, so I ended up sleeping with her. This morning she slept in to 10 am and she said she feels dizzy and pukey when she stands. We have noticed a little white on the endsides of her cheecks. This is probably the start of mouth sores. We are now on caution. Sarah can pick up germs real easy. The next 7-10 days we will walk on eggshells because if she gets a fever of 100, we are off to the hospital to stay until her blood levels are normal. This is an anxious time because one minute can change everything. Please continue to pray for Sarah. She is now complaining that her throat hurts to swallow, it must be those sores coming:( Thank you for your support.
love, Jackie

Monday, December 6, 2004 10:52 AM CST

Day 6 of chemo, one more day to go! Sarah is feeling pretty good. I have noticed that she is more tired and that her hair is getting lighter. This usually happens before it comes out. After tomorrow's chemo she can go home. So we should be home around supper time. And some very wonderful neighbors brought over Papa Murphy pizzas for us so they will come in handy for supper tomorrow!!

When Sarah comes home, her white blood cells will fall. We will draw blood from her 3 times a week to see when they start to rise. At the point they begin to rise, Sarah will go in to have her stem cells collected. It is a timely process. Hopefully after one day, we will have enough and she can go home. I am hopeful:) Then after the holidays, she will have tests done to see how her organs, lungs, etc. are for transplant. Then the transplant. As it gets closer, I am getting anxious. I want it behind us.

We are all excited for the holidays. The girls are ready for Santa and the house is decorated. While Sarah is home from school, I am going to plan a day when Catie can be here and have a day of baking. We bought a ginger bread house progect to make. The atmosphere this Christmas is different from 3 years ago when she was going through chemo. Maybe it is because we know what to expect this time. Even though it is a relapse, she is doing great. She was in remission even before we knew that the tumor taken out was cancer! I have my moments when I am sad and cry,but I have to remember the positives. The Dr.'s are very optimistic about Sarah. Our oncologist told us that Sarah always was a special case, even from the start. Her tumors never behaved like they were supposed to, THANK GOD!! :)
Have a great day and thank you for your prayers.
Jackie

Friday, December 3, 2004 7:02 PM CST

Hi all,
Sarah is doing good. We have 4 more days of chemo to go. Tomorrow we will be able to come home after chemo but we are admitted on Sunday until Tuesday. Her hickman line is giving us a problem because it is very difficult to draw blood from it. I guess it is a positional thing. This is going to be a HUGE pain during transplant when she is to have labs drawn daily. The days at the hospital have been long. I am glad we can come home but we are tired when we are home and just feel like going to sleep. We might stay at the McDonald house tomorrow night for something different to do. Sarah and Catie like to stay there.

Things are going well and Sarah is feeling good. I pray that she continues to do so well. Thank you for the prayers:)
Jackie

Wednesday, December 1, 2004 6:35 PM CST

Day 1, only 6 more to go(for chemo)
Sarah and I arrived at UW at 10am. She had 2 hours of water hydration and then 30 minutes of chemo. After that she had 3 hours of hydration. As the chemo was going in, I felt my heart skip a beat as "here we go again" came to mind. Sarah was given an anti-nausea medication along with a steroid. This combination made Sarah feel goofy. She was real chatty and almost irritating:) She had her ECHO and that went well. On the way home the affects of the steroid and anti-nausea hit. She just started crying and didn't know why. She felt "funny." This lasted about 1/2 hour. She had a slight headache and felt a little pukey. I gave her some tylenol. She is now feeling ok and eating some popcorn. I had to laugh at Sarah, as the chemo ended, she sat up in bed and said,"my hair is still on!" I guess she forgot that it will take a week or so for it to start to "shed." Sarah brought her picture of her teacher, Mrs. Scheuerell to the hospital to show everyone. She would say, I love her, this is my teacher. I have to admitt that Sarah does have a pretty remarkable teacher.:) Today the hospital school had off for a conference, so tomorrow Sarah will go to school at UW. Well, I guess that is about all that has happened today. I pray it stays uneventful.:) Again, thank you for your continued prayers.
Jackie

Monday, November 29, 2004 8:00 PM CST

I received a call from UW to explain this weeks treatment. Sarah will go up on Wednesday to start chemo. The name of it is called, topotecan. She will get hydration for 2 hours, 30 minutes of chemo and then 3 hours of hydration, then she can go home. This protocol will happen Wed, Thurs and Friday. Saturday she will be admitted until Monday. During her stay, she will receive two chemos that will run for 48 hours; vincristine and doxorubin. Sarah has had these three chemo's before. Some side effects include: hair loss, mouth sores and nerve pain(in hand or feet). We are hoping for a smooth sailing through this week. She will come home Monday and I will draw her blood 3 times a week to check on her blood levels. I, or Don hopefully, will have to give her a nightly shot in her leg called, GCSF. This is supposed to help raise the levels faster. When her levels are safe and at a normal range, she will go in to have her stem cells collected. I can't tell you the date because it will depend on when her body is ready to heal. Also on Wednesday Sarah will have an ECHO done to see how her heart is as chemo can be damaging.

Tomorrow is her last day of school this year. Maybe when she is done with chemo next week we can drop in to say Hi. With the cold and flu season here, I will be very protective of Sarah and Catie. Thursday next week is the girls Holiday concert and we are hoping that Sarah will feel well enough to join in. She has been practicing very hard for the program.

I really think Sarah is ready to go to the hospital and get this overwith. She has a good attitude and I pray that she continues especially during transplant. I read about another little girl, same age as Sarah, going through transplant and she is doing great. I am so happy for them as this can be such a scarey time. Go Micaela!!;)

I will let you know how Wednesday goes. Please keep Sarah in your prayers. We thank you all so much!
Jackie

Wednesday, November 24, 2004 7:47 PM CST

Our meeting was today with Sarah's oncologist, Joe. It went well. He anwered our questions and explained his protocol to us. Without getting into a lot of details,as it was over an hour meeting, we feel more comfortable tonight.

The plan: Start Sarah with chemo on Wednesday the 1st of December. The 1st through the 4th, she will be able to come home after her chemo. On Sunday the 5th she will be admitted for 48 hours of chemo. Sarah should be able to come home on Tuesday. Her WBC(white blood counts) will be dropping, so each day we will watch her close for a fever. If she develops a fever, we are admitted to UW until her WBC come back to normal. Then, after she has recovered, we will collect her stem cells. Then, a couple weeks later, Sarah will have an autologus bone marrow transplant. (We are looking at January) So it seems resonable to say we will be home for Christmas, as long as she has recovered from chemo. After transplant, she will have some radiation to the main site and that's it! I know that this is hard to understand. And I made it sound simple but the reality is that bone marrow transplant is HUGE! I will get you all more information as we go. But, for now, we are enjoying being home.:) We have another week until we start chemo and Sarah is glad that she can go to school on Monday and Tuesday. We are going to enjoy Thanksgiving with family. We wish you all many blessings and thank you for your continued prayers and support. (Keep them coming:)
Jackie

Tuesday, November 23, 2004 1:07 PM CST

The Dr. called and we meet with him tomorrow at 2pm. We have a lot of questions and we pray that he can answer them. We will know more then.....
Jackie

Monday, November 22, 2004 1:30 PM CST

Sarah has had a great time being home! She has been in school, went to the movies a couple of times and spent time with friends and family. We should be hearing from her cancer Dr. today or tomorrow on when Don and I can meet with him. Last Wednesday night he called to say that he was thrilled with the news that Sarah's tests came back clear. He was going to spend Thursday and Friday consulting with Dr.'s in the Country on what protocol to use on Sarah. Although, he did mention that he is still leaning on the autologous bone marrow transplant (Sarah using her own bone marrow). So, the good news is that Sarah is considered in remission. The bummer is that she will need preventive treatment. Sarah knows that she will have to go back for treatments. We are talking about transplant with her and trying to prepare her for the long stay(4-6 Weeks). We have bought a couple of decorations for her hospital room to help cheer her up. I am going to get some aromatherapy scents to help lift our spirits when it is so gloomy outside. That is about it for now. We will wait for the call........
Jackie

Wednesday, November 17, 2004 2:24 PM CST

Sarah is in school and she is right back to her old self.:) Tonight my brother and family is coming over for pizza. Everyone is looking forward to seeing them. My nephew, Drew, can make anyone laugh.

Don and I have been thinking.....
We have a lot of questions about Sarah and her treatments. Relapse is supposed to be nasty and very aggressive. Yet again, Sarah's tumor was fully resected and no evidence of disease anywhere else. What do we do?? I know the Dr.'s are researching on a plan. But Don and I want to be part of the team. (If that makes sense) So, I called to make an appointment with the cancer Dr. with Don and I. We want it all laid out for us. I am scared of making the wrong choice for Sarah. I am praying for the answer to be very evident for us on what to do. Please help us with your prayers.

As, Don said today,"Today is a good day, she is at school, cancer free, and excited about being home. Let's enjoy today." Thank you all,
Jackie

Tuesday, November 16, 2004 10:28 AM CST

Can you say, CANCER FREE? Sarah's test ALL came back fine, no evidenence of disease. Thank you God, again:)

Sarah is at school as I type. She was so excited to go back. I never had to give her the TNA to feed her. She started eating as soon as we hit Fort Atkinson. We drove by her old school and saw the lights on, she looked up to her kindergarten classroom and said, Mrs. Vogel has the Hungry Caterpillar up. We do miss our "family". But it has been so wonderful to still hear from you all and know that Sarah and Catie are still with you all. Sarah loves the web site guest book entries from everyone. It brings a smile to her face. Don and I are hooked at reading them and checking them. It is addicting:) Sarah has touched so many lives and I am a better person because of her and Catie. Mrs. Polk, thank you for a heartwarming email. Thank you everyone for being there for us. We are so GRATEFUL!!!!
Jackie

Monday, November 15, 2004 7:50 PM CST

It feels great to be home!!!! Sarah has been in a great mood all day. She went to the hospital school all day, she ate, some, and drank. She was so excited to get home. We didn't hear anything about being nausiated or feeling bad all day. Her scan was at 2:30 and it looked fine, in my eyes. So we are waiting to hear about her bone marrow results. That should be tomorrow.

We got home at 6pm, she ate Mcdonalds and is now having a scoop of ice-cream. I have cancelled the home health nurse because she is eating and drinking and I am not going to hook her up to TNA. We haven't used any anti-nausea meds since this morning at 6am. She is bouncing back so quickly. It feels GOOD:)

Tomorrow is school! She is ready to go and see everyone. I thank God for today, it was wonderful to see her smile:)
Jackie

Monday, November 15, 2004 11:36 AM CST

Last night, after Don and Catie left, Sarah was sad. She felt so bad that she had to stay. That was when I said, we are going home tomorrow. I wrote a note to the Dr. and had it left on her chart. I said that all physical tests have come back fine and now it is psychological. We need to go home. Don and I will do everything at home that she is getting here. And, I requested if all discharge stuff could be done by the time our scan was done. Well, WE ARE GOING HOME!!!!! Sarah's spirit has improved 100% today. She will go home on anti-nausea meds and some TNA(food). But I don't expect that it will be needed.:)

See you at home:)
Jackie

Sunday, November 14, 2004 3:22 PM CST

Today Sarah felt GREAT in the morning and we thought we would get out of here. But, this afternoon Sarah felt nausiated and hasn't eaten. The Dr. wants her to stay overnight. Her soft tissue scan or MIBG is scheduled for tomorrow at 2:30. Sarah is sad, angry and frustrated. She wants to come home. Grandma is there waiting for us.

Her bone scan came back all clear! That is great, no cancer in the bones:0 We are waiting on the bone marrow biopsy and the soft tissue scan. I spoke today with a nurse practioner who works with the cancer kids. She felt that Sarah would have some time home before we start chemo. And that her chemo would only be a day and then we could go home. Then we will have to harvest or collect her stem cells. This is a process that takes about 6 hours. Then we will have time again at home before transplant because she will have to undergo some tests; EKG, hearing, another kidney test...

So, I know I am jumping ahead but it is sort of the plan. I hope she just gets past this nausea soon!!! She is ready to go home.
Thanks for your support,
Jackie

Saturday, November 13, 2004 6:51 PM CST

I jinxed myself earlier. Sarah started with the nausea and vomitting about 2pm. BUT, it isn't as bad as last time. She is perky and enjoyed the day. Grandma came down and visited. Sarah and Catie also went to visit the pet pals. And we had a surprise visit from the Relay Queen herself and her daughter, Olivia!! Thank you so much for coming and the cool gifts.:)

We are going to start the nutrition around 8pm. I hope that it will give Sarah strength and help her overcome this nausea. She is going to get unhooked from her pole for 1/2 hour so she can rome the hallways better for awhile. We are going to go on a scavenger hunt and go into secret places and spy. It is fun to do that on the weekend because nobody is here and we can explore.:)
Please keep not only Sarah in your prayers but all the great cancer kids up here going through this nightmare. Also, I would like to add a dear person, Deanna, from Relay. Deanna, if you read this, we love you!
Jackie

Saturday, November 13, 2004 12:09 AM CST

Sarah put in a great night last night. She slept through the entire night. Our favorite nurse, Megan, was on and we had our usual girl talks, it was great. Don and Catie were at the McDonald house and they both had a good night sleep. Sarah did have a CT last night at 9:00pm but it came back fine. I think we are on the right track to getting better. She has not thrown up since 10pm last night. This is the longest time since we have been here. She is even using her bowels and people are happy. The Dr.'s want to start TNA( nutrients through her central line). Sarah doesn't want to because it means having her blood sugar levels checked with a finger poke. So, Sarah has agreed to try to eat. She is waiting for Grandma to get here first.:) As we speak, she and Catie are in the art room painting. I hope everything is getting better. But it looks like we will be here tonight, at least. Hopefully tomorrow we can come home.
Jackie

Friday, November 12, 2004 7:11 PM CST

Well, here is what is happening...

Sarah had an ultrasound to see why the stomach nausea. It looked fine. We are preparing to do a stomach CT to see if it will show something. Her blood work came back fine. We are perplexed.

Sarah's GFR came back......80!!!! The Dr. is thrilled:) But this means bone marrow transplant. This is what I know so far. Sarah will have some chemo to start her bone marrow to mobilize. Then she will collect her stem cells via a femur catheter. She had this done before. We couldn't collect enough last time but we saved them, now we will just add to them. After the collection, she will be ready to do transplant. Transplant will last at least a month living at the hospital. Sarah will not go home. After the transplant, Sarah will do radiation. Then she will be done:) This is just the simple version. The Dr. will talk to us next week after all the tests come back.

Catie and I came up to the hospital to stay with Don and Sarah. I think Don and Catie are staying at the McDonald house. We are hoping Sarah will continue to get well from this nausea so we can go home. Thanks for checking in with us and for your thoughts and prayers.
Jackie

Friday, November 12, 2004 11:22 AM CST

The Clifford play was cute! Catie had to read her story in the microphone and she did a great job.:) I am glad that I was there.

Last night Sarah slept from 6:00pm to 2:00am, then she threw up. She threw up again at 6am. The Dr.'s are going to do an ultrasound to make sure things are ok. If that looks ok, she will do another tummy CT scan. We have to know what is making her throw-up. It is very frustrating. I am packed and ready to go up. Don wants me to bring up Catie and we can all be together for the weekend. I hope we all can come home sometime during the weekend!! Sarah had a couple of good hours this morning. She went for a walk and washed her hair. I just hope things will get better, SOON! We haven't even started the BIG stuff yet.

Sarah is having her bone scan today at 1pm. I am waiting to hear the GFR report. Our plan for right now is to figure out why she is having stomach nausea and leg pain. (The leg pain started after surgery) I am feeling so overwhelmed and weak right now. I am not that strong person that has been writing. I feel like He is not listening to me. I plead, beg for His help and it seems like Sarah is just not getting any better. I am starting to have panic attacks. I know I have to get some help for me. I can't go on this way because I will not be any help for Sarah and my family. I just want to wake up and this to be gone. I am scared and fearful. I am angry that it seems that the Dr.'s are not fixing her. I am starting to second guess myself if she is getting what she needs at this hospital? I want it to seem that the staff are on my side fighting for my baby. And it seems that we are just hanging in there. Please help us with your prayers.
Jackie

Thursday, November 11, 2004 7:42 PM CST

We are still at the hospital. Don spent the night last night. We thought Sarah would come home today. She is still fighting nausea and a loss of an appetite. So, Don is with her tonight too. She did have her GFR kidney test but we are waiting on the result. Her new hickman gave us trouble because it is tempermental when drawing blood out of it. Sarah has to lay on her right side in order for it to work. We are all getting frustrated with this nausea. Don has talked to the Dr. and they did another stomach x-ray and she is full of gas. Her bowels are working finally. The Dr. feels that due to the gas she is cramping and that causes the pain in her stomach. I just called up there and she is resting comfortably. She has a bone scan tomorrow and an injection of nuclear medicine for a soft tissue scan on Monday. I pray that she comes home tomorrow. She cried on the phone to me, "I want to come home." I feel so helpless. Catie is so tired from our week of being on the go. I decided to stay home tonight and get Catie on a routine. At 5:00 tonight she was falling asleep on the couch.

Today I went to school to talk to Sarah's class about what is happening. I brought last time pictures and read a book called, Kathy's Hats. She received it from her Kindergarten teacher last time. The children are all so excited to see her. I am amazed at how wonderful and supportive they all are. Sarah is lucky to have them as classmates. Sarah is also receiving great support from her friends back at her old school. It is truly heart warming to witness the care and concern.

I am having a hard time being away from the hospital and feeling like I can control the situation. I call Don and Sarah every coupld of hours. It got to the point, Sarah would answer the phone and say,"hello mama." Catie and I need to be together too. Tomorrow Catie is in a Clifford the Big Red Dog play and I am coming to video tape it for Don and Sarah. I should go and get Catie to bed. Keep praying for things to get better, please.
Jackie

Wednesday, November 10, 2004 2:39 PM CST

Nose tube is gone:) She has her double lumin hickman placed(central line). She is still in the OR having her bone marrow biopsy done as I type. Hope all is going well. Catie and Don made it here in just the nick of time to see Sarah go in to the OR.

I want to thank you all for your emails. I am not ignoring you, I just don't have the energy to type yet. But I will. It is the least I can do with having you all be so caring and concerned. We wouldn't have such a positive outlook if it were not for all your help and prayers.
Thank you,
Jackie

Wednesday, November 10, 2004 9:40 AM CST

The Dr.'s found out that she has an Ileus, her bowels are asleep from surgery. So nothing is passing through Sarah. So, at 9:00pm our famous nose tube was placed! It is hooked up to a pump to suck the stuff from her belly so she won't get sick. She did rest pretty good. She was so worn out from nausea and vomitting yesturday that it is great that she is sleeping.

Because of the tests that she needs, she will need an IV. She is the hardest kid to poke. Her veins are too small or too deep or they roll. Yesturday the Dr. came in to say she will have her central line placed today after 1:00pm. This is great in the stand point of receiving fluids, medicine and blood draws. As the stand point of an 8 year old, it stinks. She can't swim or get fully wet with a bath. It is also the symbol of, you're sick and the chemo is coming. She will also have a bone marrow biopsy done today. The results should be in on Friday. I haven't heard when the other tests are going to happen. After the procedure today, we will evaluate her to see if she feels up to going home. We can always come back for tests, they are out patient.

I feel better today than yesturday. It is funny what some sleep will do.:) I also had a visit from a mom who's daughter is a relapse. It felt good to talk to someone in a similar situation. A friend from home once said to me, " Sarah has cancer, she has hope." I must remember that and keep strong. My two other friends, whos children have relapsed also gave good advice,"Zoloft works great!" I have to find some humor:)
Jackie

Tuesday, November 9, 2004 4:15 PM CST

well, we are still here. Sarah is fighting nausea. The surgeon Dr.'s came through and are going to do an x-ray to make sure the bowels are moving properly. If they are not, she will have a nose tube to suck the gunk out. Tomorrow is the placement of the central line and the bone marrow biopsy. Sarah is very sad about this because getting fully wet, is no longer. Sarah is showing signs of depression and saddness and we are going to start her with the psychologist here. Today was a bad day. Her IV blew and nobody could start another one, so the GFR kidney test is backed up till next week. She wants to go home but she also said she is to sick to go home tonight. I feel overwhelmed because obsticles are happening already and we haven't even started the big stuff yet. The cancer Dr. came by to have me sign the consent for the bone marrow biopsy. He said that he is hoping for transplant. He said that it will be HARD, and that having her polysistic kidney disease it will be a challenge. The head surgeon came in to say that he thinks Sarah might have a UTI from her foley that she had. We are going to place a IV and give her medicine and hydration tonight. I feel frazeled and need some air. I know Sarah is feeling the same, if not more. She is sad that she is not in school, she misses her friends, she wants to be normal. That is all she has ever wanted. Why God, why??? I think I am losing my mind right now. Please continue to pray for her. It is just the beginning of this huge battle.
Jackie

Monday, November 8, 2004 11:09 PM CST

Well, now that dust has settled and we are in our save our child mode, I can write more.

Sarah is still considered in remission because the tumor was resected. The margins were clear but they were not huge. A good margin is 1 inch, Sarah's were 1/4 inch. BUT there was still a margin:) Relapse is automatically considered high risk and we are put into that category. It doesn't matter if there is cancer in the marrow or if she has the n-myc cell. We will be put into the high risk protocol.

Sarah will be going through some tests to make sure the disease has not spread. Tomorrow we start with a GFR. A kidney test to see if her kidneys are up to stem cell transplant. If she scores a 60 or more, we are going into transplant. We were unable to do transplant last time because her kidneys were working so poorly. We don't want Sarah to go into renal failure. But Sarah has had 15 months of no chemotherapy and a chance for her kidneys to regain strength. We are hopeful that her kidneys will be able to do this. But if her kidney test is below 60, she will only do chemotherapy. Both choices, chemo or transplant will end with radiation. We didn't do radiation last time because her tumor was near her kidney and we didn't want to hurt it. This tumor was not as close to the kidney and the surgeon came in to say that there are options with how we can administer the radiation. So, for now, we are praying for good results on the tests. NO Cancer any where else would be wonderful! Please pray for good results:)

How is Sarah? Catie? When I told Sarah that the cancer is back, she shrugged her shoulders. I think deep down she knew. We talked about her hair loss, time away from home and school, mouth sores and medicine. She said, I know, but I got to do what I got to do. She is amazing! She is my strength:) Catie didn't have much of a reaction. She didn't want to go home tonight. She cried and carried on. I am afraid that this is what the future will be like. So, Catie and I are having a sleepover in Sarah's room tonight. Don, didn't want to go home by himself, so he stayed at the Hampton.(the McDonald house was full, so they put him there).

The Dr. said that children do survive relapses. We talked about survival rates and he said he would say it once, 20%. He said not to dwell on the %'s. He also said that he was not ready to give up, so we can't give up. This relapse is like if we were diagnosed for the first time with stage IV, high risk. I know some kids that were diagnosed with this and they are home, well and survivors. Sarah will be there too! We just have to finish our protocol that she didn't get last time. Although I sound so calm, cool and collected; I am scared and I beg you all for your prayers. Thank you all, until tomorrow...
Jackie

Monday, November 8, 2004 3:43 PM CST

RELAPSE, it is back, Neuroblastoma.

Monday, November 8, 2004 10:32 AM CST

Hi, Last night Sarah put in a pretty good night. Don stayed with her. Catie and I went to the McDonald house. She has some pain and every once in awhile she feels nausiated. But in general we see a big improvement.

We are still waiting...........But I will let you know when we find out. I have a huge knot in my stomach and I feel very anxious. The nurse said that she would let us know when she knows. She also said that the staff is optimistic with what they do know so far. Thank you for waiting with us. Please keep the prayers coming and prayers for my mom. She is here having a consultation about an anurysim(sp?) that was found in her head. Thanks!
Jackie

Sunday, November 7, 2004 3:57 PM CST

Sarah woke up in pain with her foley catherter(sp?) We stopped her epideral at 12:30 and she agreed to drink pain medicines. Four-six hours after an epideral is stopped the foley can be pulled. At 3:15 the foley had stopped working. We could tell this because no urine was coming out and sediment was collecting in the tube. Sarah was in much pain and the nurse agreed to pull it out. Sarah was given half her dose of morphine pain medicine and she is now sleeping. She is happy the foley is out and now we are working on the epideral. But for now we will let her rest before aggitating her again.

Catie and Don are staying at the Mcdonald house tonight. We want to be together for hopefully tomorrows wonderful news:) We are starting to get a little anxious. Catie has been a big help with Sarah today. I am so proud of her. Sarah has started drinking water and had some pudding. At least we are on the right track. I think having this foley out will make a difference.

Thank you all for your calls, concerns and prayers. Sarah has been feeling so miserable that she has not wanted to talk to anybody. Please continue to pray. I pray that tomorrow we are pleasantly estatic!! I will keep you posted..

Today at !:30, the 12 year old boy next door to us, crashed. They yelled for code blue and crash cart. It was an awful scarey time but thankfully, Victor, revived. Please keep he and his family in your prayers. Thank you.
Jackie

Saturday, November 6, 2004 8:41 PM CST

This afternoon I had Sarah in the wheelchair. We took a ride through the hospital. She is tired and filling up with fluid. Don and I helped her walk a bit but she was in pain. She has been fighting nausea. She won't drink or eat her clear liquids. Don and Catie are at the McDonald house tonight. Sarah is in bed sleeping, I hope for the night. She has a good nurse that will keep up on her anti-nausea medication.

The hallway back her is full, all 10 beds. We are on the cancer floor. We still do not know anything, we still are praying and hopeful. A new 4 week old baby is just brought back here. I can see the fear in the parents. I want to help or say something but they are scared and need to be with their son. It doesn't help to see bald headed kids with poles and wearing masks because your white blood counts are low. Or to see a little girl crying her tummy hurts and she is pukey. So, I go in our "cave" and take care of my little girl and pray for us all.
Jackie

Saturday, November 6, 2004 2:12 PM CST

Today things are better. I was able to get Sarah up out of bed and wash her up and then I put her in a wheelchair to give her a walk. At 12:30 she laid back down and is tired. She is resting and Don and Catie are off at the child life Dept. with Pet Pals. It is a program where people bring up their dogs and have children pet them and love them. It is amazing how well that works.

Things are pretty quiet for now. Our plan is to get her up to walk this afternoon. She can have clear liquids now, but she dislikes all clear liquids! Even jello! I will let her sleep and then try again later. Please keep the prayers coming:) Thank you all very much!
Jackie

Friday, November 5, 2004 9:45 AM CST

The night went ok. When Sarah was waking up completely from her surgery, she felt sick to her stomach. But thank goodness she did not throw up. Every hour she was up with pain, so they gave her morphine to help with her pain meds. The morphine would allow her to sleep for a couple hours at a time.

This morning she is awake but in alot of pain. As of right now, she does not want to see anyone. She is not happy that she has a foley catheter in, two IV's and oxygen drying out her nose. But she does not have a nose tube:) She did have one in after surgery but the nurse found it coiled up in her mouth and she pulled it out. Now we pray that she doesn't need one:)

Other than this, all is going on as planned. Thank you all again. I will keep posting...
Jackie

Thursday, November 4, 2004 10:29 PM CST

Hi,
Sarah is resting comfortably in bed, asleep. Don and Catie are staying at the Ronald McDonald house. I sit here and watch over Sarah and thank God for miracles.

Surgery was late today, prep took an hour and the cut started at 4:20pm. At 6:30pm Dr. Lund came up to say that she is doing well and that he feels he got it all. It was contained and easy to pop out. It had different characteristics compared to the other tumor. It was shapped as a sausage link, about 2.5 inches long. Sarah asked for pictures of this tumor too, so we will post them when Dr. Lund gives them to us. This tumor did not have any feelers that typically neuroblastoma tumors do. There are positives and we are still hopeful. Even the surgeon says to hold on to hope. We will wait for the biopsy to come back with the results.

I can not thank you all for the guest book signings, emails, calls and PRAYERS. It really warms my heart to know that there are so many people who care. God bless you all and thank you. Please, I ask that you continue to pray for Sarah's recovery and for the biopsy report to be benign. I will keep you posted on how Sarah is doing. I am anticipating that she will be in pain tomorrow with a lot of discomfort. They cut her long way this time. Good night, Jackie

Thursday, November 4, 2004 6:35 PM CST

Surgery took two hours! They got it all!!!!!!!!!!!!!
We don't know what it is exactly until biopsy, but there is still hope. This tumor has different characteristics than the first one. It still could be benign. PLEASE KEEP YOUR PRAYERS COMING.

We are going down now to be with Sarah in recovery and then she will be back in her room tonight. THANK YOU ALL SO MUCH FOR YOUR SUPPORT. WE LOVE YOU ALL
Jackie

Thursday, November 4, 2004 1:05 PM CST

There was a delay from the first surgery this morning. Sarah just went into surgery at about 3:15pm. Surgery should last 3 hours at the most. Keep the prayers coming and bless you all for signing the guest book.

Sarah is feeling great and took a bath this morning. She is playing on a computer down the hall while waiting. Catie is here and she has been a great help with Sarah. Sarah has her sense of humor and was dancing, playing Barbies and playing tic, tac, toe. She had to have 2 enemas this morning and that went better than I thought. After she got done with the second one, she kicked up her leg and yelled,"I feel good!" (like the commercial on TV) What a hoot! She is making me feel better. What an amazing gift Sarah is.
I will keep you posted....
Love, Jackie

Wednesday, November 3, 2004 8:19 PM CST

Hi all,
We are at the hospital. Sarah had to have a nose tube placed in order to receive her bowel prep drink. She was not happy about that. The first nose tube kinked so we had to do it twice. She has been nauseated and throwing up. Her IV blew so we just decided not to do another and let the OR room place one tomorrow. Surgery is scheduled for noon tomorrow. Please pray, pray and pray.

We are in room 52 and phone number 608-267-8015

Another good note is that her Catecholamines, a test for neuroblastoma,came back negative. There were none found in her system. When she was diagnosed back in 2002, she had them. We keep trying to find the positives and keep a hopeful outlook. Sarah is so precious, just seeing her lay here tonight breaks my heart. Not having Catie here, tears me apart. Thank you Rob and Kathy for having her. Sarah's teacher, Mrs. Scheurell, stopped by with the best gift; a video with all the classmates. We watched it as soon as she and her husband left. Thank you so much for a wonderful gift and visit. Happy birthday!!!

Thank you everyone for your concern, calls, cards and prayers. We love you all and need you all so much.
Please remember Sarah tomorrow around lunch time as she enters surgery. Thank you.
Jackie

Tuesday, November 2, 2004 10:35 PM CST

I come to you all with a heavy heart. Sarah had a Ct scan last Thursday and a 6cm mass was found on her left side of her abdomen. The Dr.'s do not know what it is. Sarah looks good and feels good. Sarah is going into the hospital tomorrow for surgery prep. And Thursday Sarah is scheduled for surgery to get this thing out of her. We met with her surgeon today and he feels optimistic that he can get it all. After surgery, they will biopsy it and we will find out what it is for sure.

Sarah is not showing signs of symptoms. She is eating, playing, going to school, swimming lessons, etc. This is confusing the Dr.'s. Her bloodwork is normal. There is nothing different but this mass.

I am begging you all to PLEASE pray for Sarah. I am praying for another miracle. I feel numb and can't believe we are going in for surgery. Sarah is anxious and scared. Please, keep her and Catie in your prayers. Thank you all so much.
Jackie

Thursday, October 7, 2004 6:08 PM CDT

Hello,
Things have been a little hectic! Sarah and Catie's grandpa Hunter died October 1st. It was unexpected and a shock. Monday was the wake and Tuesday the funeral. While we were away at this, Sarah's teacher called to say that there is a chicken pox case in the classroom. Thank you Leigh Ann for calling!! I called UW to see what needs to be done and of course Sarah needed to come up for an antibody treatment. It wasn't so bad, just 3 shots! She just sat there and watched. I can't believe her. So today, we all went back to school and work.

Back in June we had a scare with cancer. This time it was with me. I went in for a routine exam and they found precancerous cervical cells. I had a biopsy and treatment. I have to have pap tests every 3 months. Last week was the first of the 3 months. I called last night for the results and it was negative! No cancer cells found. Thank you God!

Next week is Sarah's birthday. She will turn 8! I am crying just thinking about it. I am so thankful she is seeing her 8th birthday. There was a chance she would not. Friday is her birthday and Saturday is her friend party and Sunday is a get together with my side of the family. Birthdays are pretty big here. It is a true celebration of life. Thank you for your prayers and for stopping by on the site. We always appreciate your concern.
Love, Jackie

Sunday, September 26, 2004 10:06 AM CDT

Oh my,
I noticed the last time I wrote in it was July! But no news is good news!

Sarah and Catie have started school. They have started a different school this year and are both really enjoying it. The girls have grown sooo much! They are wearing the same size clothes again. Sarah is still about 2 inches taller. The girls are involved with Brownies and tomorrow is their first meeting. Wednesday evenings the girls take part in CCD, religion education. So, they are keeping busy. It is heart warming to see and hear Sarah and Catie reading, doing their homework and talking about their day at school. Neither Don nor I take it for granteed. It is a blessing that we are all home, feeling well and living a "normal" life. Sarah has gotten her first cold for the season and I can say it has been the 1st time in two years I didn't panic! I am making small steps forward:)

A good friend of mine from high school called to give me some hard news. Her little boy, Ben, has relapsed again from Wilm's cancer. The cancer is in his only kidney and he will start chemo next week. The good news is that the cancer is contained! Please keep Ben in your prayers. I have given Michelle the caringbridge address, so please stop by with words of thought. Thank you! Miracles do happen!!
Thank you all for continuing to check on Sarah. We feel blessed and we are cherishing each other everyday!
love, Jackie

www.caringbridge.org/wi/benjamin

Friday, July 30, 2004 2:30 PM CDT

Hi everyone,
Sorry that it has been awhile since I have last wrote. But as the old saying goes," no news is good news." Sarah is doing great! Since I last wrote she has learned to ride her bike without training wheels. She has a few bruises and skinned up knees.

Relay was an absolute blast! Sarah was so excited and ran around all day with friends and family. Survivor lap was wonderful. She was given a tiarra and sash to wear. We had friends and family from all over come to be with us. It was so nice. We were to give our speech at the Luminary ceremony at 10pm but Sarah went home at 8pm with a headache and pure exhaustion. Don, Catie and I did it and the speech went fine. It was a wonderful weekend to put closure to Sarah's cancer journey.

We have gone to a UW children's picnic and carnival. It was a lot of fun and very enjoyable. Sarah won a bike! We now have to get Catie hers a little earlier than we have planned.:) Sunday we are going to a Make a Wish birthday party at the Milwaukee Brewers baseball game. It will be fun I am sure.

We went out and bought the girl's school supplies. They are very excited about going to school. They start Sept.1st. I can't believe Sarah will be in 2nd grade. This November will be 2 years since diagnoses. On the 18th of August Sarah will go in to have her check-up. As of today I am not worried.:) But as it gets closer I know I will be more fearful. There is no reason for concern. I have to keep telling myself that. But the worry is always there. I am happy to say that our UW friends are doing well and having a nice summer.

Thank you for continuing to check up on Sarah. We appreciate your concern and prayers. I will post new pictures soon. I have 9 rolls of film to develope. I think maybe I should get a digital camera?:)
love, Jackie

Saturday, June 12, 2004 2:20 PM CDT

Hi all,
Sarah and Catie just finished their last day of school yesturday. They are very excited to start summer break. I have to admit that I am ready too!

Everything is going well. We are getting ready for our Relay for Life event which is July 23-24th. If you have never gone to one, I suggest that you do. It is the most touching celebration. Sarah is our Honorary chairperson this year and we all can not wait to get caught up in the emotions.

I hope everyone has a safe, healthy summer. I will write soon. I have new pictures to put on!!
Love, Jackie

Friday, May 14, 2004 10:11 PM CDT

Hello,
Happy belated Mother's Day!
Things here are going well. Sarah had her CT scan and a bone scan. I thought she was done with having bone scans but the protocol outline said she needed one more. so after some confusion she had that scan done too. We met with her oncologist on Wednesday and he said everything looks good. Thank you God! It was the best news:) Our family went to the appointment and the Dr. made a comment to Catie on how great a sister she is to Sarah for always being there with her. He commented on how he can remember the two of them riding in the wagon, staying for overnights, and playing together. That was very nice of him to say those things. Catie is very attached to Sarah and Sarah is to Catie. Sarah goes back to Madison in August for her next check up. We received the "road map" for the next 5 years. That is the magic year. He also said that every year out is just that much better. She is 14 months out! (but who is counting, hee, hee)

Thank you for checking on Sarah and my family. Thank you for your continued prayers.
Love, Jackie

Tuesday, April 27, 2004 7:57 PM CDT

Hi all,
Things are going well! We have been busy, but that is good. We are moving into our new home this weekend. We are all excited. I am anxious to get out all our stuff from storage. I can actually put new pictures on the website. Sarah's looks have changed from the pictures I placed back in October! Her scans and tests are coming up, the first week in May. I was already for the week when I received a notice in the mail saying that Sarah only needs one test, a CT scan. I could've fallen over! Usually she needs: a bone scan, soft tissue scan, Ct scan, bone marrow biopsy, bone marrow aspiration and labs. I called her Dr. to see if there was a mistake. I can't explain how I feel. I am happy that she does not have to have all the tests. I am overwhelmed with joy that the Dr.'s feel so strong in her prognoses. I continue to pray everyday and thank God for his blessings. Our life is moving on and getting comfortable again. And I am happy to say we are all together!:)

Everytime I reflect on where Sarah was and where she is now, I can't help myself from feeling like the luckiest person alive.:) As my friend always says, "Hug your children everyday." Thank you all for keeping Sarah and my family in your thoughts and prayers.
Love, Jackie

Friday, March 26, 2004 9:52 PM CST

Hi all,
Tomorrow is a very special day for us. One year ago tomorrow Sarah had her surgery to have her tumor removed. It is a day I will never forget. Don and I took Sarah to the hospital. On the way there Sarah wanted to listen to her Piglet CD. Don and I tried hard to conceal our tears. We were so anxious and afraid. Don and I walked down with Sarah to the waiting area. I walked with her to the OR. I felt so scared to leave her. I am glad she was already asleep when I left. Don and I went to her room to wait. Don tried to keep his mind off things by using the computer. I tried resting but all I did was pray. I pleaded for a miracle. Two hours later her surgeon, Dr. Lund, came in. My heart fell. I thought they opened her up and closed her. The Dr. said she is fine and did well. We could see her soon. He sat down next to me on the bed and said he was able to get the whole tumor! He checked her margins three times and they were clear! That means the cancer did not spread. The next few days we were walking on air. Doctors came into our room and congratulated us on the best news we could get with cancer. Sarah received her miracle!! Tomorrrow will be one year of NED, no evidence of disease. We heard later from one of our surgeons colleages that our surgeon said Sarah's surgery was the cleanest resection of neuroblastoma he has ever seen.

Tomorrow we are getting our families together for dinner. It is a Thanksgiving of life. I feel so blessed to have my girls with me. I know Sarah received her miracle because of all the prayers and help from her guardian angel, thank you dad:) Believe in miracles, they do happen. Please continue to pray for Sarah and her health. I am forever grateful. My little girl is still with me today, when I thought I might lose her. Thank you!

Love, Jackie

Sunday, March 7, 2004 8:37 PM CST

Hi all,
Sarah had her kidney Dr. appt. last week. Basically, we don't know awhole lot. Don and I had to give our health histories. This disease can be heriditary. Don and I both have some of the symptoms. It could be either one of us. We are waiting to hear from the Dr. She was going to read over Sarah's scans and history. The good news is that the cysts have not gone to her liver. We were given information on how to help keep her kidneys healthy. But with this disease, her kidneys will get worse, hopefully we can prolong that. We are talking adult lifetime when she could experience problems. And sometimes people can live with this disease. It is something to help treat but nothing we can worry about.

The girls are taking swim lessons. They are having such a fun time. We are getting anxious to move into our home. Hopefully we will move in April. It would be nice to spend Easter there. Really there is not a lot going on. Sarah is feeling great and we are just going on with life. I am so thankful for that. We are getting motivated for our Relay for Life this July. It will be here before we know it. Sarah is the "poster child" this year. We feel very honored.

Thank you all for keeping in touch with Sarah's progress. We are forever thankful.
love, Jackie

Monday, February 23, 2004 9:19 PM CST

Hi everyone,
I write today to ask for your help.

Sarah has a meeting in March with a pediatric kidney Dr. We know she has polycistic kidney disease (pkd). This disease does not have a cure, yet. Typically, with this disease the kidneys stop functioning. People will need dialysis and a transplant. Also, typically, the problems with the kidneys seem to appear in your 30's and older. So we have time. Sarah will be monitored and watched now for the rest of her life. This is where I come to you all again.:)

I believe in the power of prayer and miracles. Please keep Sarah in your prayers with this upcoming Dr. appointment. We really appreciate your help and concerns for our family.
Thank you, Jackie

Thursday, February 12, 2004 8:34 PM CST

HAPPY VALENTINES DAY!!!!

Sarah went to Madison to have her bone aspiration and a hearing test done. There was no change in hearing since last time so she is not going to have that test done anymore. While we were there I asked if the other tests results came back from last week. They all came back, NEGATIVE!! Sarah is free of disease. Next month will be 1 year of being in remission!! How wonderful. And we found out that she will not have to get a bone marrow aspiration done again until next year. This is because she never had disease in her marrow to begin with. So that was good news.

Tomorrow the girls have their valentine party at school. They are so excited. Last year Sarah could not attend the party. What a year it has been!

Thank you everyone for checking in on Sarah and for your prayers.
love, Jackie

Friday, February 6, 2004 1:47 PM CST

Hi everyone,
The week of tests and scans are kind have over. Sarah has a cold and we were unable to do her bone marrow aspiration because the Dr. didn't want to put her to sleep and her to have a coughing spasm. So we will go up next week Thursday to have it done. There has not been any offical report back from our Dr. It will take a couple weeks. But according to our Bone Scan Technician, he didn't see anything "light" up. And our MIBG, soft tissue scan, was shortened by a day because nothing showed up. All her lab work was in normal range. We are still waiting to her about her CT scan. And at the end of the month we are to drop off her 24 hour urine collection. That will check for VHMA levels? Something to that sort. So, I am starting to breathe again:)

As many of you know, we are involved with our Relay for Life in our hometown. This year the wonderful committee asked Sarah if she would be this years Honorary Chairperson! We feel very honored. Because Sarah is shy with crowds and public speaking, we decided that we will accept this as a family and stick together. It will also help Catie feel important and part of this great event. If will be held in July. What a wonderful celebration for all who attend. Of course it is very touching and powerful to see all the survivors. But it is also a celebration for those who have earned their wings. They will never be forgotten and we reflect on their memories. I ask that you consider going to a Relay near you and get soaked up in the atmosphere. Well, enough of my speech:)

So what is next for Sarah? Well, we go back next week for the bone marrow aspiration. Then in March we are to meet with the kidney Dr. We are now going to be watched by them. As many of you know Sarah has PKD (polysistic kidney disease) This is a disease that has no cure as of yet. She has cysts on both of her kidneys. One day, typically in her 30's, her kidneys will give out and she will need to be on dialysis and need a transplant. The rest of us are going in to get checked if we have it. It can be heriditary. So now Sarah will be followed by our new kidney Dr. As far as cancer goes, she will only need to be seen every 3 months for a year. Our next appt. is in May. Then she will have labs, scans and tests done just like this past week. That's about all. It sure is wonderful beyond words to say that I am so happy that we are all together and given a second chance. Always believe in HOPE. Without that, what do you have?

Take care, thank you for your prayers and thoughts. We appreciate all of you so very much!:)
Love, Jackie

Saturday, January 24, 2004 2:05 PM CST

Hi everyone,
Just writing to say that Sarah is done with all medications:) She is feeling great and today we went sledding! The first week of Febuary she will go back to Madison to have her scans and tests done. This is a very scarey time. I pray everyday that she is all right and that nothing shows up. Please continue to pray for her and for His healings. Also please continue to pray for our friends fighting this battle. Thank you so much.

Sarah is on another website called Quilts of Love. Please check out her quilt and the many others! Thank you Quilts of Love!!
Love, Jackie

Thursday, January 22, 2004 4:42 PM CST

It is with a heavy heart that I write tonight. As I was checking in with the other websites of our friends, I read that a young man, Ryan, has earned his wings and is now in heaven. It brings the reality of this nasty beast called, cancer. It shows how important each day is. It also scares me. I can not imagine what Ryan's family is going through right now. Please keep his family in your prayers. God bless your soul Ryan.

Sarah has ended her last of all medications. She is done! We are scheduled to go Feb.2-6th at UW for scans, tests and bone marrow aspiration. She will be scheduled to do this every 3 months for a year. These are the most frightening times. I PRAY that nothing shows up in the scans and we can sigh a relief. I just keep my faith and pray for His healings everyday. That's all I can do. I do ask for you all to please keep Sarah in your prayers. Please keep all our Cancer Friends in your prayers. Thank you!

love, Jackie

Sunday, January 11, 2004 7:20 PM CST

Hi All,
New Year's Eve was nice. We stayed home and ordered pizza. The girls stayed up to midnight and we all rang in the New Year. It was great being together, at home, and healthy.

Sarah did have to go up to Madison for labs and a clinic visit. All is well and she started her last round of medicine. So we are getting scans and tests lined up for the end of January or early Febuary. Every three months Sarah will be checked. And as the years go on, she will be seen less and less.

Really that's about all going on for now. We spent a wonderful weekend at the Wisconsin Dells, swimming and celebrating Don's birthday, my brother's birthday and my mom's birthday. We had fun swimming and hanging out together:) The weekends sure fly by too fast!

Please keep Sarah in your prayers, especially with the upcoming tests and scans. Thank you all very much!

Love, Jackie

Wednesday, December 31, 2003 8:49 AM CST

HAPPY NEW YEAR!!!!

I came out to the living room this morning and said to the girls," today is the last day of the year." When we wake up tomorrow it will be 2004, a new year. And then it hit me. What a year it has been. Last new Year's Eve was spent in the hospital. Sarah was receiving her chemo. But what I remember about that time was that she (and I) finally came to terms with this disease. We could either be depressed and defiant or go with the flow and accept what had to be done. Our attitudes changed. We were still scared, there are times I am still scared! But Sarah accepted her new change. Hospital stays were easier with a better attitude. She endured so much. We were living on edge, like walking on egg shells. She could wake up feeling fine and an hour later have a fever, and off to the hospital we would go for a stay. I am so thankful that I am a stay at home mom. I am also thankful that Don's work was so understanding. And I am thankful that my mom would drop everything and come and stay with Catie. But there were many times Catie would come with. All she really wanted was to be with Sarah and us. It really was the best medicine to have the "sisters" together.

Then came her surgery. What a day that was. To find out that her tumor was resected and it was totally incapsulated! It was a miracle! We later found out that the tumor was actually maturing on its own and becoming a ganglioneuroblastoma. I have since found out that this is typical for very young children (under the age of 1) with neuroblastoma. Due to this miracle, Sarah's protocol had changed. From long and frightening to short and easier. We started maintenance chemo. It was like a drink of water in comparrison. We were home and fevers and sickness didn't happen.

School started, we moved, she turned 7 and things are back to normal. In March she will have reached 1 year of remisson. I am finally starting to look ahead longer than one day at a time. I still do have my panic moments and I can still get myself in a worry, but it is getting easier.
There is a lot to be thankful for. I am hoping and praying that 2004 is a healthy one for us and for all of you. Thank you all for everything.

God's blessings,
Jackie

Tuesday, December 23, 2003 8:48 PM CST

Hi all,
The flu is over! (for now) The girls are going stir crazy and very anxious for Christmas. This year is diffenitely a lot different than last! Thank you God!:)
Because Sarah has had the flu, her Dr. told us to take a week off from starting her last round of accutane. He wanted her to feel good and peppy again. So we will go to Madison on the 29th for a clinic appt. and then start her last round of therapy!! At our clinic appt. we will find out what we do from there. I know we will have to do scans, x-rays, etc. every 3 or 6 months. I am not sure? But for right now, I am not going to think about it:)

Things are going well. Sarah can actually pull some hair together to make a little "sprout" on the top of her head. We had to go out and buy some clips for her hair. She was pretty tickled. I know I am bad at updating pictures, but Sarah's hair has taken off. It came back the same color and curly again. Her 1st grade picture on the home page looks so different already. I will be taking pictures over Christmas and I will have to have Don take them to work where there is a scanner. Our's is packed away until maybe March.

Our friend, Emma, received her transplant and is now waiting for her new cells to graft. Please keep Emma in your prayers. Her website is on our home page. By reading our other friend's websites, it sounds like everyone else is doing well.

I want to thank everyone for their continued support and prayers for my family. This past year has been overwhelming to say the least.:) I am asked, How did you do it? My only answer is, what other choice did we have. I know we "survived" due to all the prayers and concern. It has changed our lives. I truely mean it when I say, thank you all for everything that you have done and continue to do, to help us. God bless you all!

We wish you all a very Merry Christmas and a blessed, healthy new year!
Love, Jackie

Sunday, December 14, 2003 3:06 PM CST

Hi all,
Well, the flu has hit Fort Atkinson! Sarah came home Thursday from school with a headache. Tylenol seemed to help. That night she started with a terrible cough. When Friday came, she had a fever along with the above symptoms. I called the doctor in Madison and he said it is probably the flu. We went to our regular pediatrician and he did a nose test to determine if she has the flu. It came back positive for influenza A. So here we are staying in for the weekend. But what is great this time, is that in the past when Sarah would get a fever, we had to go to Madison and start antibiotics and draw labs. It was a guaranteed 48 hour stay. Now, we are just like the old days. She has the flu, nothing more. This is great!

We had tickets to go to Milwaukee for a holiday show featuring the Rockettes from New York. Unfortunately Sarah and I could not go. Don and Catie took Grandma and Grandpa Hunter with them and they all had a wonderful time. I am glad that they were still able to see the show. Now we are getting ready to watch the Green Bay Packers play. We could tie for 1st in our division. Yeah Packers:)

Hope the flu stays away from you. Stay healthy!!
Love, Jackie

Wednesday, December 10, 2003 1:23 PM CST

Hi all,
Sarah has just ended her 5th round of medicine. She has one more round to go. She will start that on Christmas. We go on the 23rd for clinic appointment and labs. She is feeling great and shows no signs of problems. Thank you God!!
Last night we met our friend, Dawn and her two boys for dinner at McDonalds. Her son, Justin, is the little boy who has neuroblastoma. How wonderful it was to visit and watch the kids play. We are used to visiting at the hospital and the kids laying in bed watching tv. We had a nice time and it was great to see them again, especially out of the hospital!!
Tomorrow is Catie's 6th birthday. Where does the time go? She is having a birthday party on Friday with her whole class at the bowling alley. She is very excited. This years birthday will be so much more pleasurable for all of us. The girls' Christmas program is the 18th and they are so excited. I can't hardly wait. We missed last years production.

Our friend, Emma, is at UW receiving her stem cell transplant today. She has AML leukemia and is 4 years old. She relapsed a couple months ago and transplant is part of her protocol now. One scarey side effect about Emma's transplant is that she couldn't use her own stem cells. So with a donor there is the risk of graft vs. host infection. Please keep Emma in your prayers that this does not happen. She is a beautiful, creative, lovely little girl. Also, please keep her family in your prayers. It is extremely hard, emotional on them all. Her website is on the bottom of Sarah's page incase you would like to read about her and give her words of encouragement on her journal. Thank you.

Well, I better go and get some stuff done around here. Thank you for reading and for your thoughts, concerns and prayers!!!
Love, Jackie

Saturday, November 29, 2003 6:14 PM CST

Hi all,
Hope your Thanksgiving was enjoyable. Today we were to go to a Kids with Courage reunion with other cancer survivors. We were so looking forward to it. But, Catie and I are fighting terrible colds. Sarah is now starting a dry cough. Tis the season. Our friend, Dawn, called to let us know how it was and said she picked up a video for us. That was nice. I wish I could have been there to see old friends. Well, it gives us something to look forward to in 5 years!

We did go out and cut down our christmas tree today. We have been going to the same tree farm before the girls were born. Last year I remember the girls and I walking up the hill and I was videotaping (like I always do) when all I could think was what if this is the last year for the four of us. I cried and cried. It was a depressing holiday even though I should've been thankful we were together. Needless to say, this year, going out and walking up and down the tree farm, I shed tears, but tears of thankfulness and joy! Thank you God for miracles:) This will be such a wonderful holiday. I think of our friend Justin, he was diagnosed on Christmas day. Today he is home and getting stronger everyday. What a great Christmas this year will be for them. I guess the old saying, having your health is the most important gift. So, Santa, if you are listening, all I want for Christmas is a healthy family.

Thanks all for listening and for praying. Even though things are better than last year, we always need prayers:)

Love, Jackie

Thursday, November 27, 2003 1:00 PM CST

HAPPY THANKSGIVING!!

Hi all,
Hoping this finds everyone well. Sarah had a clinic appointment yesturday. Everything came back fine. What a wonderful relief! She started her 5th round of accutane today. Her last round will be at Christmas. Then in January she will have her scans and bone marrow aspiration to really get a good look. But all is well.:) Her Dr. did say that he will refer us to a pediatric nephrologist in January. This is a kidney Dr. He will keep track of Sarah's polysistic kidney disease (PKD). So it is like jumping from one frying pan into another.

While we were at the hospital, we did get to run into a couple of friends. Rae, it was GREAT to see you. Our prayers are with you and Emma. And then at clinic we saw Carly and her mom, Karen. This was awesome. Just two weeks ago Carly was on a ventilator and in intensive care. MIRACLES DO HAPPEN!!!!! It was wonderful to see them. Saturday we will have our Kids with Courage reunion. Here we will see our other friends. I heard it is to be taped for Good Morning America. I will try to get some info on that.

Looking back to last year, Sarah was in the hospital recovering from her 1st round of chemo. She had mouth sores real bad and was in great pain. This also was the day that her hair fell out. She was so depressed when she saw herself in the mirror. She said she was never going to leave her room. She cried and cried. I remember laying next to her, holding her, crying and praying that God would give us the strength. Our world as we new it was crashing down. Wow, what a year can bring. Here it is one year later, she is feeling great, in remission and we are so THANKFUL. This Thanksgiving is very special. I hope your Thanksgiving is just as special.

Love, Jackie

Thursday, November 13, 2003 8:19 PM CST

Hi everybody,
Things are going well. It has been a couple weeks since I last wrote and I wanted to let you all know that all is still well. Sarah has finished her 4th round of accutane. While she is on it, she becomes moody and her lips dry out very badly. A couple days after she stops it, her lips and skin return to normal. I am glad that she only has a couple more rounds to go. We go back to the Dr. Nov. 25th for her check up and the start of her 5th round. Then in January she will have a ct scan, bone marrow aspiration and her urine test to really check her over. This will happen every three months for a year. Those are the days I really panic and worry. But I am starting to feel more calm and feel that all will be ok. Ask me how I feel tomorrow and it might be a different story:)

Sarah and Catie are going to be in our city's holiday parade on Saturday. Sarah will march with the Brownies and Catie will be on a float representing our school. It's small things like this that I am so thankful for. Events like this is what I longed my children to be part of. To be able to be with their friends and make memories and have fun.

November 29th we are going to a conference called, Kids with Courage. It is my understanding that it is an event that celebrates children and their families who have survived cancer. We sent in a couple of pictures of Sarah and they are making a video to show. I can only imagine how emotional that will be! One Dr. called it a bitter sweet day. It is a day to celebrate but also a day we will never forget the children who have earned their wings. Cindy Crawford plays an important role in getting this event together. She is originally from northern Illinois and her brother died of leukemia back in the early 70's at UW childrens hospital.

We have been getting things organized for Christmas already. We are all excited about this years Christmas. What a difference this year will be. We have so much to be thankful for and appreciate. Please keep our friends back at UW in your prayers. Emma and Carly in particular. Their websites are at the bottom of Sarah's page. Thank you everyone for keeping Sarah in your thoughts and prayers. We can not thank you enough. We appreciate it so much.

Have a Happy Thanksgiving,
Love,Jackie

Wednesday, November 5, 2003 12:41 AM CST

Hi everyone!
Things have been very crazy lately. But a good crazy:) After we came back from Florida, we had to pack up our house and get ready to move. We have been so busy with packing and moving and keeping certain things out that we think we need. My brother came up and helped us move out and we signed house papers on Friday the 31st. The girls were sad that the house was empty and that we were going to give the keys over to the new owners. But all is well now. That afternoon we went to the Wi Dells to a hotel for the weekend. We wanted to be away and celebrate Sarah's diagnoses anniversary. November 1st was a year. So we now have happy, fun memories to help replace the old, scarey ones. Ron H and the Madison firefighters 331, sponsored us to a trip to the Great Wolf lodge. This was a wonderful get away. Thank you so much Ron and local 331. Sarah and Catie had a great time swimming.

We came back to get lab work done and start #4 cycle of accutane. She only has two more rounds to go. She should be done by the New year. All her labs came back great. We are now down to once a month for labs instead of every two weeks. This is a huge milestone. Every change is a great step for Sarah.

The girls are doing fine and enjoying school. Don and I are trying to get used to apartment life:) It really is not so bad. We try not to "sweat the small stuff" anymore. Since having moved, I have not had access to our computer, so today I am at the girls school and using their computer lab. Hopefully soon we will have ours up and running.

Thank you very much for your continued support and prayers. Please keep our friend Carly in your prayers. She is having some difficulty and it is very scarey for her and her family. Thank you. You can check her website, it is at the bottom of Sarah's page. She is a twin, with the same type of cancer as Sarah, just different stage. Please keep Michael in your prayers. He is 16 and was sent home two weeks ago on hospice. God bless his soul and family.

Love, Jackie

Sunday, October 19, 2003 11:46 AM CDT

Hi all,
We are back from sunny Florida:( We had such a great week it was hard to come back home. The plane ride was excellent. This was the first time the girls flew and they really enjoyed it. We stayed at Give Kids the World Village. It is a village that accomodates children with life threatening diseases and their families. They have a movie theater, ice cream shop, arcade, chaple, castle and carosole. On Monday, we arrived at noon and spent the day swimming and unwinding. That night there was a pool party with shamu the whale and picnic food. On Tuesday we went to Epcot and MGM. Sarah had a pin that allowed us to go to the front of the line to both the rides and autographs with characters. That was sooo nice. On Wednesday was Sarah's birthday and we went to Magic kingdom for breakfast with Cinderella. What a beautiful day! Cinderella, Snow White, Belle, Sleeping Beauty and Mary Poppins was there to stop by and sign an autograph and take a picture. Sarah and Catie were in 7th heaven. It was a magical day. The day was great and that evening we stayed for the firework show called wishes. It was about make a wish upon a star, dreams come true... it was very appropiate:) Thursday we went to Universal studios. It was fun but the park closed early due to Halloween fest that was geared for adults only. That was ok, because we were tired and ready to come back to the village to swim and relax. I did laundry to catch up before we had to leave. Friday we went to the animal kingdom and it was awesome. The Lion King show was excellent. The weather was great, sunny and warm and about 85. Saturday we had to be out of our villa by 11, so we went to downtown Disney to buy some goodies. Then our flight was at 7pm.

There were so many families at the village from around the world. We met some great people from Ireland, New York, UK, Kentucky and Maine. On Thursday some characters came to our village for pictures. There was a little boy, down syndrome and just the most precious little guy. He came running up to Goofy and put his arms around him and was so happy. I started to cry. There were so many "sick" children there. I didn't see Sarah as being sick. One little guy had ALL leukemia and his white blood counts bottomed out so he could catch a cold or other sickness easily. I kind have forgot about how that used to be. It seems long ago. Thank god! Friday Barney and friends came to the village. Sarah and Catie grew up watching Barney and Sarah still likes him. She was so shocked to see him up close.

The trip was wonderful with memories that will last a lifetime. The make a wish foundation and give kids the world were wonderful and most gracious. I can't thank them enough.
We also received great news while we were gone, I am an aunt! My brother and his wife had a baby girl, Morgan. She was born on October 14th. I can't wait to see her.

Tomorrow Sarah has to have blood work drawn and both girls have dentist appts. We are moving to our apartment today and back to reality. This weekend Sarah is having her kid birthday party. She is very excited about that. Last time we were at the hospital our Dr. said we were half way done with her accutane. She has three more rounds to go. Sarah will be done at Christmas!

Thank you for checking in on Sarah and thank you for keeping her in your prayers. She has been in remission since April. 6 wonderful months, praise God!!!!!!!!!

Love, Jackie

Sunday, October 5, 2003 7:57 PM CDT

Oh my goodness, what a weekend! The Make a wish foundation asked us awhile ago if we would speak at their fundraiser banquet. We said, sure and looked forward to going into Milwaukee for the weekend. What a surprise we had!! Yesturday a limo came to pick us up and take us into Milwaukee to the Hilton hotel. There we were greeted by the manager and assistant with balloons for the girls and red carpet. I felt like a movie star but we looked more like rock stars, with our blue jeans on:) Anyway, we went to the 19th floor to the governors suite. There they had gifts for all of us. We enjoyed the water park and then that evening went to the banquet celebration. I have never been to such an event in my life. There was a silent auction that helped raise money for the the foundation. I was interviewed on channel 12 news. I was so nervous because all I could think of was what if I stutter or Please, god don't let him do a close up:) I asked the camera man if he put on his "skinny" lens. Anyway, I haven't seen it yet, we are going to get a copy later this week. The manager of Hilton gave the girls presents in honor of Sarah's upcoming birthday. Then Don and I gave our speeches. I went first and talked about the past year, then Don went from there and spoke of how make a wish has helped bring us (Sarah) something to look forward to. It was standing room only and I believe my guardian angle was there helping me through it. Afterward we met some very wonderful people that thanked us for sharing our story. Today a limo brought us home, just in time for the Packer game:) We are all tired and can't believe last evening. We feel very blessed to have helped make a wish raise thousands of dollars so that other children can have wishes too. Sarah didn't like all the attention on her. But when we explained that she is helping other children like herself have wishes, she felt pretty good.:)

Back to school tomorrow for a short week. I will write and update pictures after Florida. (Unless something exciting comes up):)
Take care, Jackie

Thursday, October 2, 2003 9:16 PM CDT

Hi all,
Sarah had her labs drawn last night and she is doing great! Her numbers are all normal and fall in the range of a normal, healthy child. Thank god:) We saw her Dr. and he said she looks great.

School is going good. A little frustration with math. I hope she gets that worked out. Tonight was open house at school. The girls were so excited to show us their classroom. Tomorrow is Brownies. She really likes going to that.

We rented an apartment and will start to move things over this month. We met the couple that will be buying our home tonight. They seem very nice. We have to be out by the 31st. We will stay in the apartment until the house is done, hopefully by Febuary. The girls are tickled to be living in an apartment. We live on the second floor and it reminds them of a hotel. I only wish it was a hotel:)

This Saturday we are going to Milwaukee, to speak at a make a wish banquet. We are looking forward to this event. The make a wish foundation have been very good to us. The couple that is helping us with our wish plans are coming over on Monday to give us our tickets and agenda. It is almost time to go and for one week I am really going to try to not worry.:) I want to soak up the magic of Disney.

Really that is about all the news. The girls are healthy and we are trying to enjoy our old lives back. It can always be a worry but we try to not let it be. I am really the one who is having the problem. Sarah wants to move on, get away from thinking she had cancer and put it behind her. I am proud of her.

Our friends at UW are experiencing some trying times. Emma is feeling the effects of strong chemo. Carly has just started her transplant process. Justin is home and will be starting his last phase of treatments, the same treatment as Sarah. Ashlee and Parker are doing fine and by their websites, are enjoying each day.

Thank you for your continued prayers and support. Next time I write will be about Florida:)
Love, Jackie

Sunday, September 21, 2003 4:38 PM CDT

Hi all,
Things have been going well. Sarah had her labs drawn on Thursday and the results were fine. Her blood work is stable. She is feeling good. School is going good for both girls. Sarah joined Brownies and had her first meeting on Friday. My mom came down to stay for the weekend. It was Don's class reunion and it involved the whole weekend which was fun and we had a great time. The girls had fun with grandma. They went to the apple orchord and visited my brother and his family.

While we were at the hospital Thursday to do labs, we stopped by to see Emma. She is our friend who has relapsed. They are getting ready to start a bone marrow transplant. They have found a donor that has matched and it won't be long now. Please keep her and her family in your prayers. It is a very scarey time. Thank you.

There is really nothing exciting going on here. We are very happy and feel very blessed eachday, knowing that all is well. We TRY to take each day one day at a time. It is hard sometimes but we have to think that way. November 1st will be Sarah's one year anniversary. A day I wish I could erase.

We do have exciting news, we have an accepted offer on our house! We put it up for sale on Friday and Saturday there was an offer.:) So, if all goes well with their finances we will be moving. We are looking at it as a new change, new beginings.

Thank you all for continuing to read our website. And for keeping Sarah in your thoughts and prayers.
Love, Jackie

Saturday, September 6, 2003 11:46 AM CDT

Hi all,
I got a call the other day from school that Sarah had gotten hurt and was bleeding and needed me. When I got there she was covered with blood from her mouth and very upset. I took her right away to the dentist and they sent us to a pediatric orthodontist. He wanted to make sure there was no damage to her permanent tooth root. Luckily for Sarah, it did not show any fractures but her tooth did chip and may need to be filed down in the future. No nerve endings were showing so that is another good thing. She felt better that evening and things look better. We do need to pull her loose baby tooth that is next to her front tooth. I hate calls from school!!!

Last night I was reading through web sites from our cancer families. This is something I do everynight. When I got to our friend, Emma, tears flowed non-stop. My biggest fear for Sarah had come true for Emma. She relapsed! She is 4 years old and has AML leukemia. She is the cutest most creative little girl. Why do these poor children have to go through such hell? Please keep Emma in your prayers. Her website is at the bottom of Sarah's page. Please keep all of our "kids" in your prayers. This just shows how fast and evil cancer is. It sneaks up on you and you didn't even know.
Love, Jackie

Thursday, September 4, 2003 9:23 AM CDT

Hi all,
Things are going well for Sarah. She is to start her accutane today so we need to go to the Dr. for a physical exam first. We had labs drawn on Tuesday so we don't need those again. Her counts were perfect, just like a healthy child again. It has been since November that we received normal results with blood work. This means her red blood cells are producing and she is not anemic. That is where her energy comes from. Her white blood count is normal so she can fight off colds and other bugs. Just in time for school:) Her platelets are high and clot blood now. She fell yesturday at school and showed me her skinned up knee. She said, My platelets must be good, it stopped bleeding right away. And all her chemistries are fine, these include: magnesium, calcium, phosphorus, etc. She always had a problem with magnesium, so she was on a supplement. We can now start to tapper her off that.

School is going good for both girls. They are still excited about going and get up early. I know the excitement will where off but I hope not for a while. Don is on a trip in North Carolina for a couple of days for work. So the girls and I are having a girls night out tonight in Madison after the Dr. appt. Last night we all went to bed early. I am not used to getting up early. :)

Please keep Sarah and my family in your daily prayers. Even though things are well, we will always need your help. This disease is very unpredictible and I pray we don't ever have to deal with it again. Thank you all very much.
love, Jackie

Monday, September 1, 2003 8:16 PM CDT

Happy Labor Day to everyone!
Tomorrow is the big day for us-school starts! We have had a wonderful end to the summer. Everyone feels well and is full of energy. The girls are so excited about school. They have their clothes laid out for tomorrow and their backpacks are already in the van. They didn't want to forget a thing.

The girls and I watched St. Judes commercial on TV tonight and cried. I don't know why I do that to myself. But I enjoyed listening to Sarah and Catie talk about things they remembered throughout this past year. Catie mentioned how she cried because she didn't want to leave Sarah at the hospital. Sarah remembered how her and I couldn't sleep one night and we took a midnight walk, Sarah riding her IV pole, and ate a freeze pop. A lot of memories this past year. There were some funny memories too. One day Sarah was sleeping and she awoke to a giant panda bear looking at her. It was a person dressed up as Amanda Panda. Sarah about had a heart attack. Sarah is afraid of clowns, especially Ronald McDonald. Well Ronald makes a lot of appearances at the hospital. Sarah saw him coming down the hall and she started running the other way, faster than her pole. We got back in her room to make a sign that read "Sarah's sleeping" then Ronald wouldn't bother us. Sarah loves the Disney princesses. A volunteer teacher gave her a princess trivia game. Some UW football palyers stopped by to sign posters and visit. It was funny to watch these tough football players play princess trivia. Our quarterback knew a lot of the answers,hmmm:)

As we are approaching our 1st anniversary, I am scared but I am also so thankful for how well Sarah is doing. I appreciate life more. It is too bad that tragedies have to wake people up. I continue to pray everyday that Sarah and Catie will remain healthy and that I can watch them grow old. Please help us by continuing to pray for Sarah and my family. We so very much appreciate it.
Love, Jackie

Thursday, August 21, 2003 2:53 PM CDT

Hi everybody,
Things are still going well. Sarah has just finished her 1st round of accutane. It went well, just some dry skin. Her bloodwork was done yesturday and things are fine. So we have a two week break before starting rounding 2. Tomorrow at 9:30am she will get her hickman out!! She is very excited and we went out to buy some fun bath soaps and bath paints. She is really excited about being done and feeling good. Don and I have even had a couple of "dates" these past couple of weeks.:)

What is next for Sarah? Tomorrow her hickman is removed. Then on September 10th she will go in for a clinic appointment and have labs drawn. We will do this once a month for awhile. Right around Thanksgiving time she will have a CT scan and urine test to make sure things are well. Sunday is our swimming day with Grandma:) Then next week the girls and I are going to stay with my mom and go to the WI Dells, a tourist hot spot. Then we have a county fair to go to with my brother and family. Last, will be school! Very busy, but it is nice:)

Our friends at UW are doing well. Emma is home and is done with her long stays at the hospital. Justin is home and successfully finished his stem cell transplant. And Carly had a successful surgery on her neuroblastoma and is resting at home. She had the same surgeon as Sarah. Congratulations everyone! Keep the faith and keep believing in miracles:)

Next week will be the 1 year anniversary of my father's death. This past year went by so fast. There are days I can't believe he is gone. It is a comfort to believe that my dad is watching over us, especially Sarah. My dad was the kind of man who would do anything for someone, especially someone in need. I know my dad is Sarah's guardian angel. I do miss him terribly but I do feel his presence still here. Thank you dad. Sarah could not have made it without you and God.

Thank you everyone for still keeping up with us. Please write a note in the journal, we still look everyday. Have a great rest of the summer and enjoy life!!!
Love, Jackie

Tuesday, August 12, 2003 10:34 PM CDT

Hi everyone,
All is going well. Sarah's skin is pretty dry. We are constantly adding cream to her. We got a call yesturday from the hospital to say that her hickman can be pulled out on Friday the 22nd! She is so excited. My mom is coming down that Sunday to spend the night. She is staying at a hotel so that we can all go out and celebrate by swimming:) Our next Dr. appointment is September 10th.

What's next for Sarah? Enjoying life:) School starts September 2nd. We are just trying to go on and not take each day for granteed. Sarah was accepted by the make a wish foundation to go to Disney. We leave in October. We will be there for her 7th birthday. Her wish was to have breakfast with Cinderella at the castle. She was granteed her wish and on her birthday she will be with cinderella. We are so excited and feel blessed.

Please keep Sarah is your prayers, we do appreciate it very much. Please remember our friends back at UW; Justin, Carly and Emma. Thank you all very much.
love, Jackie

Sunday, August 10, 2003 9:09 PM CDT

Hi all,
Sarah is tolerating her new medicine well. Because it is in the form of capsules, I have to cut them open and mix with peanut butter. She loves that! One side effect is happening, some dry skin. We bought some vitamin E cream and it is really helping. She is full of energy and wants some friends over for a playdate soon. Tomorrow she is going to have her eyes checked for school. I am doing this as a precaution.

I have to tell you a story. A friend of the family was taken to the hospital for pancreatitis and other problems. It was very severe and Jack slipped into a coma. It has been 9 days. His wife, marilynn, called the children to come home because the Dr.'s said Jack won't make it. Sarah and I went to church to drop off some pies for a bake sale, when I said to her, let's go in and light a candle for Jack and for poppy Rego. So off we went and said a prayer. When we came home my mom called to say that Jack has opened his eyes and is responding! When I told Sarah the news, she thought it was because of lighting the candle and saying a prayer. Power of prayer??:) I do hope Jack comes out of this well.

What is next for Sarah? This week I am going to draw her labs to make sure her blood work is fine with the medicine she is on. I am also going to call our nurse practioner to make sure Sarah is on the schedule for getting her hickman out. Other than that, that is about it. Please continue to keep Sarah in yoour prayers and all the other children from UW hospital. Thank you very much.
Love, Jackie

Wednesday, August 6, 2003 9:58 PM CDT

Hi everyone,
We had our meeting with the oncologist tonight. All tests were fine!! Thank you God. Our next phase is the accutane. Sarah will start that tomorrow. It is for 2 weeks on and then 2 weeks off for a total of 6 months. This drug does come with side effects that are not long term and will usually go away when medicine is finished. For example, she will be very sensitive to the sun, her skin and lips will be dry and flakey. She could be tired and depressed. But these two effects are not too common for her age and dose. I will just watch and make a note of any changes. The Dr. can lower the dose if need be. Her hickman will come out the 21st or 22nd of this month! She is so excitied for that so she can swim again. Things look very good.

Don and I did talk with the Dr. alone while the girls went out to play in the waiting room. We discussed Sarah's future and his thoughts and what research shows, etc. He mentioned that when a surgeon is able to get the whole tumor, like in Sarah's case, It is called a total resection, it is the best form of cure. He said that with Sarah having that and not having N-myc amplification, neuroblastoma cells that reproduce rapidly, and having clean marrow, and responding well to chemotherapy; he feels very optimistic that she will not have relapse. Her odds of relapse were in the low 20f that. When he re-told us of the positives of Sarah's outcome, I said,"it was a miracle" and he said, " yes, it difinitely was." I feel so good right now:) It is a scarey thing to go through and to wait for test results. I know that there is no guarentee in life, but I do feel better after our talk tonight.

She tells me that grandpa is her guardian angel and takes care of her. I know my dad had some input in her outcome:) Tonight she told me she wants to be either the Dr. or the nurse that helps kids with cancer because she knows what it is like and will help them feel better. I hope she does do something like that. Thank you for reading and keeping up with our news and for your prayers and support. If there is one thing that I have learned from this ordeal, that is the power of faith. Sarah did receive a miracle. The medical profession even agrees. Miracles happen:)
Love, Jackie

Friday, August 1, 2003 6:49 PM CDT

Hi all,
Things are going well here. I found out that our tests and scans have come back good. This means that Sarah is still in remission!! Although, we are waiting on her urine test but the Dr. feels very optimistic. Thank you God! And of course all of you for your prayers. Sarah and Catie are very excitied to go to school. We went out and bought the school supplies and the new shoes. The girls start school on the 2nd of September. Sarah is very excitied to go to school as she was "cheated" out last year. I am happy for both girls that they will be to school together. Even though they will be a grade apart, they can still eat together and play at recess. My heart is sadden selfishly because both my girls will be gone. I will be alone for the first time. And I don't like it! So, I agreed to be the lunch helper and will help in the classroom. So, I feel a little better:) I have to ease into this ya know.

So, what is next for Sarah? Monday I will draw her blood and find out how she is doing. Then I will get a call from her Dr. about making a clinic appt. to discuss her last phase, the accutane. I am so excitied because we are making clinic appt. and not going right into the hospital. A huge difference! Sarah has gained weight, she is just about where she was last year at this time. She has good color and spunk. And her hair is coming back the same color and is about 2 inches already! She actually gets bed head!

Thank you all for checking on us, supporting us and for your prayers. We couldn't have made it without your help.
Love, Jackie

Thursday, July 24, 2003 9:18 PM CDT

Hi all,
We have been going to the hospital everyday this week and having tests and scans done. On Monday she had her GFR test to check for kidney output. The test came back fine, for her. Then on Tuesday she had a bone scan and a bone marrow biopsy. We haven't heard about the scan, but from my eye everything looked fine. And the Dr. said the biopsy looked good, still all clear. Wednesday was a radioactive test called a, MIBG. It scans her soft tissues. By my eye nothing showed up glowing on the xray, so I feel good about that. Today was a long day. Sarah is getting tired and tired of running to Madison. She has a low grade fever, 99.0 and she is pooped out. We drew her blood today and she is fine that way. Then we did the MIGB test again. We do it for a total of 3 days. Still nothing was glowing:) Then a couple of hours later she did a CT scan. Tomorrow is the last MIBG scan and then an echo to check the heart. I want to sleep all weekend! We will definitely be taking it easy. Next week we should hear the final word from the Dr. about the tests and scans. I do have to collect a 24 hour urine and drop it off next week. But I have to get the radioactive "stuff" out of her first.

It has been a tense and stressful week. Maybe a lot of it has to do with little sleep? Maybe some has to do with the worry? Sarah's oncologist spoke to me on Tuesday after he did the biopsy. He feels very confident in Sarah's prognoses. He said she had the best outcome that could have happened in neuroblastoma, happen. I keep playing that in my mind, especially when I start to panic. There is no guarentee in life, I know that now. But I still would like some comforting, positive reasurances.

The Dr. is also thinking about putting Sarah on the LAST phase of her protocol as early as next week. It is called, cis retinic acid-13. Also known as, accuatane. Yes, the acne drug. I guess it has shown wonderful results with neuroblastoma cells in keeping them from forming. She will be on that for 6 months, but 2 weeks on, 2 weeks off. The Dr. is also checking on when we should pull her hickman and be done of that. She is excitied! It will call for occasional pokes for blood draws. Well I guess that is about it for now. Thank you for your prayers and I ask you all to please continue. Thank you all again!
love, Jackie

Sunday, July 20, 2003 9:13 AM CDT

Hi all,
We had a wonderful weekend! It was Fort Atkinson's Relay for Life. The weather was great and we had a wonderful time taking part in the event this year. Sarah was very excitied to be there and was out at the site from 10am helping to set up the camp until 11pm. She was full of energy, the most I have seen in a LONG time. But about 9pm she started to poop out but wanted to stay and watch her friends from school sing at the luminary ceremony. At 6pm was the survivor walk and that felt great! There were 123 survivors present. One was a little girl from our town that has leukemia and we met at the hospital. She walked next to us for awhile. But unfortunately left after the ceremony due to a fever and was admitted to the hospital. Because of the treatments these children endure, their immune system is out of sorts. Fevers strike up at any given time and then it is off to the hospital for precautions. Back to Relay...at 10pm was the luminary ceremony were the pink and white bags were lit for in memory or in honor of a cancer patient. It was very emotional and somber. The event was a celebration for us and for Sarah. We are anxious to do it again next year. Our team, camp sunshine, made approxiamtely $3480 and our town made approx. $280,000 for the American cancer society.

Tomorrow Sarah goes to UW for tests and scans to make sure all is well. I am glad that this is going to happen but I am also very anxious. I don't ever want to hear,"I see something." My heart is pounding very fast already as I gear up and I have stopped breathing, so to speak. My dreams at night wake me up and I just want this to be over. I keep reasuring myself that she is not symptamatic and all will be ok. I know God and her angels are there for her and that does help. I am a worrier by trade:) So I ask to please pray for Sarah that all goes well. Thank you.

I just read the web sites from our UW friends. All seems to be going well for them. Justin is sick from the chemo and is waiting up there to get his stem cells back on Tuesday. Then they wait to see if they graft. But because they are his own cells, they should. Emma has just received her last IV chemo and is doing well. Parker and Ashlee are doing well and I am still waiting to hear on Carly.

Thank you all for your continued support and prayers.
Love, Jackie

Wednesday, July 9, 2003 10:15 PM CDT

Hi all,
Things are going well. The Dr. called to line up some tests and scans that are part of the end protocol. This is where I get nervous. This will take place at the end of the month. Then in August her hickman can be removed. She is feeling good and looks good. Her appetite is improving. All good things. As our Relay for Life approaches, I can't help but get emotional. We are truly blessed. Sarah talks about the day she was first diagnosed. She asks questions and we talk about how scared we were. It brings tears to my eyes remembering how the events unfolded. I will never forget. I think the one thing that will stick in my mind forever was when I told Sarah she has cancer. She fell to her knees and cried and said, "I am going to die! Will you please die with me so I don't have to go alone." Then Catie started to cry and say"I don't want Sarah to die!" That was hell. I was so scared. I thank God that it wasn't Sarah's time. I thank all of you for praying for her and my family. I remember Don saying, "We are a family, we will stick together and do things as a family." He would say that all the time to Sarah and Catie. Another memory I will never forget is the day she lost her hair. It was Thanksgiving. I was combing out large chunks of hair and I was sobbing quietly so she couldn't hear me. I threw away the hair before she could see it. When she got up to brush her teeth, she looked in the mirror. I will never forget her lifeless expression. She didn't cry but looked so terribly sad. She then sat on her hospital bed and said that she was never going to leave the room. I got scared. I didn't know what to do or to say. All I could do was cry and hold her. As I did I prayed for help. That afternoon she stopped crying and said she was ready to go to the art room. I asked if she wanted to wear a hat or scarf and she said no, I am ok. And from that moment on she went out in public without anything on her head and it didn't bother again. I had a hard time seeing her in the beginning. She looked "sick" and people starred. That was hard. I wanted to beat everyone that looked and pointed. Sarah didn't even notice the people. I give her so much credit. Even Catie, cut her long hair so that some child could have a wig. Catie wanted to help in some way. A lot has happened. I explain to my friends that when we were diagnosed, I held my breath and now that we are done, I can breathe. And now that I am breathing, all my emotions are pouring out from the past 9 months. It was a rollercoaster ride!!

Our dear friend, Justin, is going in on Monday for his stem cell transplant. He is the cutest little boy! As I mentioned in past journals, he has neuroblastoma, like Sarah had. Please included Justin and his family in your prayers. This will be a difficult time for them all.

Thank you once again, for listening and for your prayers. We deeply appreciate them.
Love, Jackie

Saturday, July 5, 2003 8:46 PM CDT

Hi everyone!
We are done!!!!!!!! Sarah finished her last treatment today of chemo. It was a very special day. Child Life program had cake and a poster made for Sarah. We had one of our favorite nurses, Sue, today. Sarah was excited and deep down I truly feel she knows she really accomplished something big:) Our friend, Carly, was up there today and Sarah has a special place in her heart for her. She gave her a bouqet of flowers she made and wanted to give her a piece of her cake. You really make a bond with the children and their parents. I am going to miss the bonding times we shared in the halls and in our rooms. So what happens now????

Sarah's counts will drop and we have to give her medicine to raise her bone marrow. Just like in the past. We have to keep sick people away and wash hands more cautiously now, especially with her counts down. Then, when she has strong numbers (bloodwork is back to normal) she will go on a drug for the next 6 months called, accutane. It is typically used for teenagers with acne. But research has found that it also keeps neuroblastoma cells away. Thank goodness for research. Her hickman will come out before school starts. This will allow us to start the new school year on a good note. There will be tests and scans to make sure all is well. But the big stuff is over. I pray to God that it will not ever come back. I love the word, remission:) Take care and thank you all from the bottom of our hearts for your prayers and concern. Your support has been appreciated and needed. Please don't give up on Sarah and her cancer friends. They are all wonderful children. Thank you, love, Jackie

Wednesday, July 2, 2003 2:40 PM CDT

Happy 4th of July, a little early! Sarah is having her LAST round of chemo this week!!! As of Saturday, she will be done with treatments. Sarah will have to be on medications for awhile but that's not too bad. Monday night, Sarah and I went to Madison and we stayed at the Ronald McDonald House for the past couple of nights. We had early appts. at the hospital and I thought if we stayed close by it would be easier to get moving in the morning. Things are going well. She tolerates this chemo easily and she is in great spirits. Her Dr. stopped by to examine her and is thrilled by how well she looks. This Saturday is a very emotional day, when I think about it and the long road we had, it is emotional. This is the day I prayed for and it is here! I am so thankful that my little girl is doing well and is cancer free! There were so many times in the beginning that I planned for the worse because our odds were not good, only a 30% chance of SURVIVAL! These past 8-9 months have been like riding a rollercoaster. I can't really write exactly what it was like, I guess it is something you have to experience. And I pray nobody has to go through cancer. Yet,I am scared for this week to end. Her treatments also meant that the medicine is working. Now we are done and we wait....I am going to die everytime we have to go in for a check up and see if all is still well. Even though we are done, please don't stop praying for Sarah. We are entering a different stage of this process. But I also want to look at the positive. Maybe you have heard the saying, Something good has to come out of this. There are many "good" things that have come out of this. Sarah's personality has done a 180. She is not so much of an intravert. She has gained confidence and self-esteem. She has learned to trust and to be empathetic. Our family has grown closer and things that might have bothered me, just don't anymore. I don't have time to worry about what someone thinks. My kids and Don are first. There were many other positives. But the one that I am hearing most about is how Sarah's personality has changed, and thank goodness for the better and not worse! :)
Well, here I go rambling again. Have a safe, fun, 4th and I will write soon!
Love, Jackie

Friday, June 27, 2003 5:31 PM CDT

Hi everyone,
We just got back from UW tonight. Sarah had surgery to have her hickman placed. It was a long, all day event. But she is home and is just tired. I changed her dressing already because I knew from past experience that dried blood is hard to scrub off.:) Her bloodwork came back just fine, so we will go ahead next Tuesday and have her GFR test, Kidney test, and then her last round of chemo!!!! She will then be done with her protocol. There is a light at the end of the tunnel and it feels good:) I do have to admitt, there are times I get myself scared. Our hospital safety net will be gone. We are so used to going at least once a week or at least having a treatment. But I know things will be fine. I have to keep the faith.:) We enjoyed our week with swimming and being in the water. It was a nice break. This hickman should be in for about 3 months. Well, that is about all for now. Thank you for your prayers and for writing on the web. They are fun to read and very encouraging.
Love, Jackie

Sunday, June 22, 2003 8:16 PM CDT

Hi all,
We just got back from Madison, where we stayed for a hotel visit. We all had a great time swimming and relaxing. Today we went to the zoo before we came home. It was a nice day and the girls are tired. Tomorrow the Make a Wish organization is coming to our home to talk about Sarah's wish. We are excited. We are also getting very excited about our relay for life this July. Our decorations came in the mail the other day. We are decoratng in suns. And our camp is called, camp sunshine for Sarah. With the song, You are my sunshine playing. This is such a great organization because it makes money for research. Children with neuroblastoma, 15 years ago, would have died. There was no hope. But because of research, children have a chance, there is hope. Chemotherapy is easier to tolerate, pain medicine is modified, stem cell transplants are shown to help... I never really thought about it because it never touched me personally. I was ignorant.

Well, the plan now is for Sarah to go back on Friday for her new hickman. Then the week of the 30th start her last chemo!!! We will update later this week to let you know how the hickman went. Our friend, Ashlee, is at the hospital. She has AML leukemia. This Thursday is her 17th birthday. If you would like to wish her a happy birthday, her website is: www.caringbridge.org/wi/ashleemmack She would get a kick out of that:) Our other friends at UW are doing ok. Justin is getting ready to go for his stem cell transplant the end of the month. Parker is doing well and just celebrated his 4th birthday. Please continue your prayers and support, we all appreciate them. Thank you, Jackie

Friday, June 20, 2003 1:58 PM CDT

Hi all,
We just received word that Sarah will go in to the hospital next Friday, the 27th, for her new hickman. So, as Sarah puts it," one more week of water!" Then on the 30th we can start chemo. She is doing well. Yesturday we met our friend, Justin, from the hospital, at a park and vistied. It was nice to visit and not be in the hospital. They only live 15 miles away from our house. He is the little 21/2 year old that has Sarah's cancer. Then last night we went to our carnival. The girls had a great time. One ride in particular, the helicopter ride, they would not get off of. The worker was very nice and let them just stay on and ride. It was an enjoyable evening. Tonight we our off to Madison, but to go to a hotel for the weekend and enjoy a pool. We celebrate everything now:) Life is too short and instead of thinking about doing something, you should just do it!

Our cancer friends are doing well. Ashlee will be celebrating her 17th birthday next week. If you would like to sign her website, her site is at the bottom of Sarah's page. Have a good weekend. Thank you for your concern and prayers.
Love, Jackie

Monday, June 16, 2003 9:26 PM CDT

Hello,
We are at the UW hospital with another infection in her central line. Actually it was probably from her first infection a couple weeks ago. So today she had her line removed! She has already had a couple of blood pokes and wants her hickman back! Because she has another round of chemo and follow up blood tests for the next couple months, she will get another hickman placed next week. It will be just a single lumin instead of her double lumin. But she will have a week until this is placed and she will be able to bath, swim and be wet. She has not been in water for 7 months! So our plans are to get out of the hospital soon, as soon as her fevers go away, and stay wet until we have to come back next week:) She kept her hickman in a jar. I guess her class will have to wait until this fall for show-n-tell. Our Dr. told us that she should have her hickman out by the time school started. So we have about 3 more months. Her platelets are still too low for chemo so we are postponed for awhile. Maybe by next week? We found out that we are 99.9ure that we will not radiate her. The radiation will hurt her kidney pretty bad. So after her next round of maintenance she will be placed on an oral medicine for 6 months and that is it! I am excited but nervous. I have to keep reasuring myself that she is going to be fine. So that is the newest update and hopefully we will get out of the hospital soon. Please continue to keep Sarah and her cancer friends in your prayers. We all appreciate it so much.
Sincerely, Jackie

Thursday, June 12, 2003 6:33 PM CDT

Hi everyone,
Sarah is going to help me write this entry. I went to school this week. Tomorrow is my last day. We are going to the park and having church outside and Catie and my mom are coming too. We went to see the movie Finding Nemo today. There were some sad parts and my mom and I cried. I want to thank everyone for your thoughts and prayers. I hope everyone has a great summer.

She thought she would help me on this one. Her platelets are still too low for chemo, so we will check again on Monday. A couple from make a wish will come over on Monday to talk about Sarah's wish. She is getting pretty excited. Yesturday the second grade class gave Sarah all the hearts that they put on their prayer wall. We counted 1,260! Whenever someone would remember Sarah in their classroom prayer, they would put a heart on the wall. It was the most beautiful wall!!
Our friend, Justin, will be going in for stem cell transplant soon. Please keep him in your prayers. You can find his website at the end of Sarah's website. I am anxiously waiting to hear about Sarah's radiation news. We should hear soon on whether or not she will have radiation. I just don't want anything to happen. We have been blessed with little complications and sometimes I scare myself thinking about "what ifs." Sarah is excited about getting her hickman out. We are going to ask to have it done this summer so she can swim. Her hickman lately has been acting up some. When I draw her blood, there are times that it doesn't work. I have to use heprin and then wait to draw it. This has never happened until just recently. I think it is getting about time to pull it. I just hope we can finish her last chemo and wait until her counts come up so we know we don't need it anymore.
Well, I hope everyone has a great Fathers day. It is a sad day for me as this will be our first Fathers day without my dad. Please remember my dad in your prayers, thank you.
Love, Jackie
Happy Fathers Day Dad, I miss you

Sunday, June 8, 2003 3:20 PM CDT

Hi everybody,
We have had a nice week since the last time I wrote. Sarah's platelets are still too low, but not too low for a transfusion. I will draw her blood tomorrow and find out how she is doing. Last Thursday after Mass, she had her kindergarten graduation. It was wonderful. She did great and I couldn't have been more proud or happier for her. Don took the day off and was able to go to the graduation and the reception afterwards. He would not have missed this!:) We left Friday night for camping and came home today. It was our first time out camping, we went with my brother and his family. It was a very nice time, except for a little rain. Even Grandma and Aunt Sandy came out to the campground to say Hi. While we were there visiting the main office, we ran into the head of nurses up at UW, who works on our floor. It was funny to run into someone from there.

This week is Sarah's last week of school and we will also know from doing lab work if she is ready to have her last chemo. We are all guessing it won't happen this week because of her low platelets. We should also find out about radiation and if it is going to happen. Yesturday we received our notice from Make a Wish Foundation that Sarah was accepted and we will be receiving contact from someone on what Sarah's wish is. She has many, but it revolves around going to Disney and eating with the princesses, esecially Cinderella and coloring with her. So we will have to wait and see...:) Next month is our Relay for Life event and we are getting very excitied about getting ready for the event. We are setting up camp in honor of Sarah, called Camp Sunshine. It will be here soon! Well that is about all that is happening for now. I will post the graduation pictures and some new ones as soon as I get them developed. Thanks for caring and your continued prayers.
Love, Jackie

Sunday, June 1, 2003 10:10 PM CDT

Hi all,
We are home! Sarah needed a blood transfusion today and then we were able to come home. Her infection in her line seems to be gone. We were able to save her hickman central line!! She was sent home on an antibiotic to cover this infection for 7 more days. Her white blood counts are good, so we can assume that they are not fighting the infection. She is in good spirits and feels great. Her ANC(neutraphil count) part of her white blood count is a little low yet to send her to school or to an indoor place. It is 459 and needs to be above 500 at least. So tomorrow she will have to stay home from school. Being at the hospital all week does drain you and maybe the extra day or so at home won't be so bad for her. She is however very excitied and determined to go to school on Thursday. It is her kindergarten graduation!!! She made it! And she is just as proud of this accomplishment as we are. We will have to have a celebration!:) There were days I thought I would never get to experience with Sarah, like the completion of kindergarten, this is a triumph for me. It is really the end of a year that was terrifing and emotional. And now a new begining. Sarah should have everything done (treatments, etc.) by the time school starts this fall. I can't really explain my feelings as I reflect the past 7 months. There were days that felt like they would never end and then there were days that went by too fast. Days I thought I would lose my daughter and days that I wanted to just die myself. I don't want to forget those times as I think it will help me through the future. I learned a lot about Sarah,Don, Catie and myself. We had some hard times, we know what stress is:) and yet we are closer than ever before. We are all survivors and we all have a lot to be thankful for. Take care everyone and God Bless! I am thankful for all of you!
Love, Jackie

Saturday, May 31, 2003 1:58 PM CDT

HI all,
We are still at the hospital. Her counts are coming up and her cultures are negative!!! So that means we get to save her hickman.:) The infection, called balis?, is going away. Only one more chemo ( in a couple weeks) then we can pull the hickman. Sarah is so excitied so she can swim and take a bath! We have been giving her sponge baths for 6 months!!!!!!! Not fun. She is feeling great and eating and drinking, for the past few days, so the Dr. is optimistic that all is going well with this bump in the road.:) She is a trooper and seems to get through these little incidences well. Many children have to get 2 or more hickmans through treatments because they get infections or clot. Sarah is still on her first from November. If all continues to go well, we should be home on Monday.

The unit is doing construction starting tomorrow, so all the cancer kids had to get moved to the pediatric ICU today. The rooms are bigger and it is our excitment! So other than that, all is going ok. Thank you for your prayers. Again, Sarah is coming out of things that can be troublesome with all your prayers and support:) Have a great weekend!
Love, Jackie

Wednesday, May 28, 2003 12:51 AM CDT

Hi all,
What a couple of days! Yesturday afternoon, Sarah had another temp. I called the Dr. and we were on our way to Madison for blood work and cultures and a antibiotic. Don took her up since they would be coming home. They got home around 10:30 pm and then I had her medicine lined up for her to take and then plugged her in to hydration for the night. There was no fevers and she slept great. This morning she slept in, and we were getting ready to go to the store and pick up the food and cake that I had ordered for the school and staff. When the hospital called and said Sarah's cultures were positive and her numbers have fallen and we need to come to the hospital for an admitt. Sarah was sooooooo upset. She wanted to do the play today. She wanted to help pass out cake and be at school. She felt fine and didn't understand why she had to go to the hospital. Don came home and took Sarah and Catie ( Catie wanted to be at the hospital with Sarah and sleep over) and I went to get the food and do the school thing. Sarah is doing fine. She looks good, feels good, so I don't know how long they will keep her. We cancelled our camping plans. She was upset about that. Life, what can you do???? I brought the cake and handed it out to the children, then made an announcement that the cake was a thank you for all the prayers and support they gave Sarah. I started to cry, children started to cry. It was so emotional. One little kindergartner asked if I had happy tears or sad. I think I shocked everyone when I started to cry. The school has been so wonderful to Sarah and us. Our priest, Ft. Bill, is excellent. We are fully blessed to have him in our parish. We think of him as our friend.
Anyway, I again ask to please keep Sarah in your prayers. My family and I thank you all so much for your concern, support, and prayers.
love, Jackie

Tuesday, May 27, 2003 1:11 PM CDT

Hi all,
Sarah finished up with chemo on Saturday. She tolerates it well, the only side effects are being tired and loose stools. We had a nice weekend enjoying the sun. On Sunday we went to visit grandma and grandpa Hunter. All the fresh air put both girls to bed early. Today Sarah is at school. We got there late because she is feeling tired. But she really wanted to be there to see the play. Tomorrow she is in the play. Don took off a half a day tomorrow to help me at Sarah's school. We are having cake for the school in appreciation of all the prayers and support for Sarah. We also have lunch for the teachers and staff. St. Joe's is more than a school to us, it has become our second family. Then after lunch we can stay and watch her play. Today she was wearing a hat at school, which she hasn't all the other times. I took it off to show her teacher her new dark colored hair. It is really growing back fast. I got out her baby pictures last night to show her that her hair used to look like that. She is bummed a little bit because she wants red hair. I guess she will have to wait until she is older to color it!
This weekend we are going to go camping if Sarah is doing well. The girls are looking forward to it. I am nervous about our adventure. Sarah may look ok, but inside she is tired and poops out fast. Her health can turn around so quickly. Just last night she had a temp out of the blue. But we won't be too far away incase something comes up.

She is scheduled for hydration tonight and tomorrow evening. I can give that to her while she is sleeping. Hopefully the fluids will perk her up a bit. On the 12th she is schdeuled for a GFR, kidney test. I am glad that they are keeping an eye on her kidneys. So far, so good. She is schduled for her last round of chemo the week of the 12th but I know she won't be ready. It takes her body at least 2 weeks longer to recoop. But the wonderful news is that it is her LAST treatment of chemo and we are praying that it will be her last forever!! Last night I was ready another webpage of a girl with neuroblastoma. Sarah was sitting on my lap. On the webpage it spoke of three other children with this disease that have been given no more hope. One little girl was sent home with pediatric hospice waiting for her. I was reading this and tears were flowing and it brings me back to how close we were. Sarah looked at me and said, "don't cry mom, I won't die, I am still here." It humbles me. Last night, while she was having her tempurature, she crawled in bed with me. I was sitting up next to her wondering what I should do, call her Dr. or wait to see if her temp was going down on her own, when she said," Don't worry about me mom, I will be ok, just go to sleep." I said I would always worry, that's what mom's do.:) She went on to say how she just wished she never had cancer and didn't have to think about cancer. I agreed, it is a lot for a little person to think about. She knows when her platelets are low because she bruises, she knows she needs blood or fluid when she is tired, she knows to eat peanut butter when her magnesium is low..... Not too many kindergartners know this.

Well, I suppose I should go. Take care and thanks for the prayers, Jackie

Thursday, May 22, 2003 7:15 PM CDT

Hi all,
Tuesday Sarah and I went to Madison for a blood transfusion and the start of chemo. This was an all day event. Sarah brought her picture with her to have the nurses put in the glass case on our unit. She is proud of her "hairless" picture.:) She is excitied because her eyelashes and eyebrows are growing back. We took a walk in the hospital to see our friends. On our walk we ran into our surgeon, Dr. Lund. Sarah couldn't say a word, she just looked at him and smiled. After he left, she said to me, there is your hero! He is a very down to earth man and we feel blessed to have had him. Sarah is continuing to have chemo until Saturday. So tomorrow, Catie, Sarah and I are going up for chemo and then we are staying over at a motel. Don will come up after work. Things are going well. We met with her oncologist(cancer Dr.) on Tuesday and he is so happy that things are going well and that she looks good. People are saying it looks like she has even grown some.

There are some children and families at the hospital that we have become close to. I have wrote about them before. I will give you their website and you can have a chance to see them. They are all great kids and we are all praying for miracles. Thank you for your prayers.
Love, Jackie

www.caringbridge.org/wi/parkert
www.caringbridge.org/wi/ashleemmack
scroll down to the "links"

Saturday, May 17, 2003 9:51 PM CDT

Hi everyone,
Today I spoke with Sarah's Dr. about her red blood counts. They are low and she is more tired than usual. I wanted to make sure she wasn't in danger. We will check her counts again on Monday. While we were speaking I asked him about her urine test that she had early May. He said the results came in and it shows no signs of neuroblastoma!! We are still cancer free:) For the next two years Sarah will get checked every 3 months. So, one down, 7 more to go. Think positive, right??!! Please continue to keep Sarah in your prayers. We greatly appreciate it. Thank you!
Love, Jackie

Friday, May 16, 2003 9:37 PM CDT

Hi everyone,
Sarah's red blood cell count is a little low. This makes her tired. So today she slept in to 8:45 and then thought she would stay home from school and hang out with Catie and me. I took the girls to see the movie, Daddys Daycare. We were the only ones in the theater, which was great!! The movie was cute but I thought all the funny scenes were already shown on the commercials. But it had a nice message. Then tonight, the girls helped me plant flowers. It was a nice day hanging out together. Don and Catie took a bike ride around the neighborhood to look for dogs. Catie is my animal lover:) Sarah and I sat on the deck and watched the cardinals eating in our birdfeeder. It was real peaceful and it really felt good. I think I notice these quiet times more and appreciate them more.
Enjoy the weekend and enjoy all the "quiet" moments being together.:)
Love, Jackie

Wednesday, May 14, 2003 8:51 PM CDT

Hi everyone,
Just writing to say that things are going well. Sarah is still in school and it has been wonderful. I love hearing all the stories and songs when she comes home. I feel sad at times because we missed out on that stuff during the school year. But there is next year. It feels nice to think about next year and not just worrying about one day at a time. I also wanted to write and say that Sarah is on a link of another web site. If you type www.christithomas.com it will bring you to another little girl from Tiffin, Ohio who is battling neuroblastoma stage 4. She is now in New York receiving treatments because they ran out of options in Ohio. Christi's has spread. She is a beautiful little 6 year old. If you type this website and click on to the "links" then click on the "christi's clubhouse" you will find Sarah and other childrens websites. Many who have neuroblastoma. I would love to meet the family someday. They seem like wonderful people. Her journal entries are so well written and I feel her emotions. If you have time, click on.

We are looking forward to the nice weather this weekend and I think we are going to "camp" out in the backyard. The girls have been begging us to use the camper. Then Monday we will find out what next week will bring. Thank you again for your support. Please keep Christi in your prayers too. Our friends, Carly, Justin and Parker and Emma are at the hospital now for treatments. Parker is receiving his stem cell transplant. He is 3 years old and has brain cancer. Emma is 4 years old and has AML leukemia. Justin and Carly have neuroblastoma. They are beautiful children and the families are wonderful. We have been working on our Relay for Life things. Sarah is looking forward to it, as Don and I are. Catie is excitied to help and sell Lemonade. When I think about the survivor lap, I get so emotional. The past 6 months have been so overwhelming. I can't explain it very well. All I can say is that I appreciate you all and the prayers. I am thankful we have faith. Well, anyway, I tend to ramble:) Take care and have a good weekend!!
Love, Jackie

Tuesday, May 13, 2003 10:40 AM CDT

Hi all,
Sarah's counts came back last night and her platelets are moving up but still not where they need to be for chemo. So we are scheduled for next week. It is not a bad thing. The Dr. explained it to me that Sarah has had a lot of high dose chemo and for some kids it will take longer for them to bounce back in between treatments. Since the tumor is gone, it is not hurting her to wait longer. So, she is enjoying school and the nice weather we are having. Last night she gave me a scare. Out of the blue she started crying and saying her side hurt. That brought back some memories. I asked if she had to go to the bathroom, she said no. Then I got scared. I called the Dr. and he said he wasn't to worried. If it got worse or woke her up in the middle of the night, to call. Just as I hung up and started to panic as thoughts were going threw my mind, Sarah yelled, I'm okay mom, the pain is gone! I guess after all she did have to use the potty.:) I think I will always be scared when she cries of a pain. It was a terrifying thought. I hope as time goes on it is easier to fully accept that things are ok. The next two years will be nerve racking. This is the time when neuroblastoma will likely come back. Even though we have good news now, we are not of the water. Please coninue to pray that Sarah is going to be fine. She is a wonderful little girls with a lot of life to live. Thank you everyone for your support. We are so grateful to the prayers and cards and gifts.
Love, Jackie

Sunday, May 11, 2003 6:46 PM CDT

Hi everyone,
This was a nice mother's day. I am so thankful that my two girls are with me. Today at church, the priest was talking about how the mother was like a shepard, takes care of her sheep. And how a mother and father would do whatever they have to for their children. At that moment, Sarah looked up at me and said," just like you mom." "You always take care of me." Needless to say, I just received the best gift on mother's day:)

Monday, Sarah is having her blood taken to find out what the week will entail. If her blood looks good, she will do her chemo. It will be nice to do it, just to get it all over with. She had a great time at school last few weeks. It is always the best medicine for her. She even went to a birthday party and had a blast. We are looking forward to her kindergarten plays that she is in. And on June 5th, after mass, she will graduate from kindergarten. Just thinking about it makes me tear up. All her milestones will mean soooooo much more.

We added some new pictures. Hope you all had a nice mothers day. Take care and please continue to keep Sarah in your prayers that all goes well.
Thank you all again, love, Jackie

Friday, May 9, 2003 4:03 PM CDT

Hi all,
We have had a great week. Sarah has been going to school and enjoing her time. Today Catie and I went on her field trip to the zoo. We had a good time. Then when we came home we went to Sarah's school to help her class out. Busy day, but it was nice:) Tonight Sarah is going to her friends birthday party. Catie is a little upset because she thinks she should go too:) Looking forward to the weekend being together. I am not sure what is up for Sunday, the girls are keeping it quiet. I did receive my mothers day gift from Sarah that she made in school. It was a canvas bag decorated and a card and a "hug" poem. I cried because I am so happy that I have my two girls with me. I pray that all continues to go well. There has been a lot of emotions here lately. I think we are finally letting ourselves "breathe" and it is emotional thinking about what just happened to us. When we look at Sarah, she is so strong and happy. She has become my idol. It is hard to explain all the inside stuff that went on here. But what I do say is that this is the closest to hell I want to ever get again.:)

Monday Sarah will go to school. I will take her blood and find out if she is ready for chemo on Tuesday. Take care and have a blessed mothers day.
Love, Jackie

Tuesday, May 6, 2003 9:00 PM CDT

Hi all,
On Monday we went up to Madison to have her hearing tested. There was no change from the last time she had it done. So, there is some minimal loss in her high pitch sounds. Nothing to get too excitied about. We visited a couple of our friends while we were at the hospital. Then the four of us stayed at a hotel for the night. Sarah brought her swimsuit and dangled her feet in. We did this for about a half hour because I could tell she really wanted to jump in there! Today, Sarah and I took a shuttle over to the hospital for her tests. Don and Catie stayed back to swim. Her echo went ok. We have not found out the results yet. Her platelets are too low for chemo. So we were sent home and maybe we will do chemo next week. We just never know what we are doing from one day to the next.:) I am getting better about that:) She also had her GFR, kidney test. I don't know the result from that either. Sarah had a great time running around the hospital and visting. She got to see some old friends and nurses. I was even happy because I got to see my nurse friend, Megan. She works 3rd shift but we got there early during shift change. It is hard to leave the hospital now. Sarah and I have withdrawls. We have met some wonderful people up there. We do miss them. Our long stays were a huge part of our lives. There were times I cried, yelled and vented to the nurses. I like seeing them but I am also glad we are not there!
Well, things are going good. Sarah will go back to school until further notice of when chemo starts. Thank you for your continued support. There are a few friends that are up at UW having treatments, if you could please keep them in your prayers: Parker, Ashlee, Justin, Emma and Carly. They are a great group of kids. Carly is just diagnosed with the same cancer as Sarah and Justin. She is a twin and is the cutest little girl. Thank you and take care!
Love, Jackie

Saturday, May 3, 2003 10:23 PM CDT

Hi everyone,
Our weekend is going well. Don is away on a fishing trip and the girls and I are having our "girls weekend." Today we went to see the movie, Lizzie Mcquire. It was cute and we had a good time. Tomorrow at our church, the 2nd graders are having their first communion. We are excitied to go and see the children receive their first communion. We are also excitied to see Don come home as he is missed. He did sneak a call in to say Hi and see how we were.

Monday we leave for Madison for tests. We have to be back at the hospital Tuesday early, so we are staying at a motel on Monday. We will start chemo on Tuesday afternoon. We will end on Saturday. If they can't fit us in on Tuesday afternoon, we will start on Wednesday and be done on Sunday. Just in time for Mother's day. Last year at Mother's day we arrived in Florida at Disney World for 10 days. I wish I was there now.:) When Sarah was diagnosed, we told her we would go back and see the princesses again. She is a huge fan of Cinderella. I will never forget her face when we meet Cinderella. She was in shock!

Today I read a journal from a friend whose son is receiving his stem cell transplant. She wrote to say that one little girl that was on our floor had lost the battle of cancer yesturday. My heart aches. I told Sarah about little Yarion. She said, at least she doesn't have to think about cancer anymore. And she asked if Yarion has wings now? This is the first childhood death from cancer that I encountered since Sarah's diagnoses. I wish I could say it would be my last.

Well for now things are going fine and I will write to let you all know how her audio and echo tests go. I, of course, am praying for great news. Thank you all for your prayers.
Love, Jackie

Thursday, May 1, 2003 10:54 AM CDT

Happy May Day!!
I remember as a kid handing out may baskets to my friends.

Things are going pretty good. Sarah went to school for a half day yesturday. Today she is tired and wants to rest. I think a lot of it is the weather. It is rainy and dark outside. Plus her grandma left today to go back home and I think she wanted to be here for that. We got a call about her treatments. As part of the study of neuroblastoma, she should go through different tests. But we were able to get out of a few of them because she just had them not too long ago. They are the bone marrow biopsy, ct scan and bone scan. So now we go back on Monday afternoon to do an audiogram (hearing) test and drop off a 24 hour urine collection. Then we will spend the night somewhere because Tuesday she is to be back at 7:30am for an echocardiogram (heart) test and her GFR (kidney) test. She needs the GFR to determine the dose of her one chemo drug. Then that afternoon she will start chemo. It will last 5 days and she will be able to go home and come back the next day. Her last round of chemo will be in June. Then as a friend explained, It will be her last chemo for the rest of her life. You have to be optimistic:) I haven't heard anything from radiation yet. Maybe next week we will talk to the Dr. about it again. Sarah is doing well and her counts are bouncing back quickly and we sailed through this last round of chemo. She was able to go to school and be a kid. She told the Dr. she didn't have time to do these tests because she has things at home and school to do. She is doing plays at school. She is Goldilocks, of the three bears and a part of the cat and the fiddle and the king on the horse from Humpty Dumpty. These are very important things in her life. This weekend Don is going to a cabin with his friends, fishing. The girls and I are having "girls weekend." We have some shopping to conquer:) Have a good weekend and I will write next week. Thank you all for your support.
Love, Jackie

Monday, April 28, 2003 6:37 PM CDT

Hi everyone,
Sarah and I went to the hospital Sunday morning around 3am. She had a headache and the start of a fever. Of course when we got there she did not have a fever. But we took cultures just to make sure and drew labs. I guess around 4am we finally fell asleep. Sunday we slept and took it easy. It turned out to be a cold and her sinuses were acting up and causing her a headache. We came home today and she is doing well. Her platelets are starting to drop and we will have to go back for a platelet transfusion soon. I was also informed that Sarah should have some tests done for the neuroblastoma study. I don't mind the audio test, bone scan, echo test, urine test, ct scan but Don and I are not fond of the bone marrow test. Her back still has bruises where they did it two other times. Back in Feb. she had a bone marrow biopsy and it was clean. It should still be clean after all this time??!!

I am not thrilled about running around back and forth, it was just really nice being home and getting back into a routine. Sarah loves school and she is working on doing plays in her class.

I found out today that there is a group for children cancer survivors called : kids with courage. It meets every two years, in Madison and Cindy Crawford is part of it. Her brother, used to come to Madison for treatments back in the 70's. He passed away but she is very much involved with UW Madison. So this November we are invitied to par-take in the event.

Otherwise things are going well. We start with the second round of chemo May 6th. Thank you for reading our website and for your prayers.
Love, Jackie

Thursday, April 24, 2003 4:23 PM CDT

Hi everyone,
Things are going well. Sarah was at school all week. Today I did her bloodwork and she needs a transfusion. So we are scheduled for tomorrow at noon. She is excitied to go because she misses her other friends. She gets along very well with the nursing staff and other children. Her counts are going down but not as drastically as before. The Dr. thinks we will be able to stay home for the most part, just come in for transfusions. We are scheduled to go back on May 6th for a kidney test to see how to dose the chemo she is on. Then we will go the 7-11th for chemo. June will be our last chemo treatment. Sarah is looking forward to growing her hair back. Her eyebrows and eyelashes are coming in now. They grow back fast.

Other than that, things are going fine. Enjoying being home and being together. We are getting our things ready for Fort Atkinson's Relay for Life. Sarah is having her own team this year. We are excitied and looking forward to the event, which is held in July. Take care and thank you for your support. Miracles do happen!!
Love, Jackie

Monday, April 21, 2003 9:25 AM CDT

Hi everyone,
Hope you all had a great Easter! Sarah just finished up her first round of maintenance chemo yesturday. She did great! Sarah feels good and you wouldn't even know she was getting chemo, compared to the stronger chemo she was on in the begining. It was a lot of running to go to the hospital and stay for about 5 1/2 hours then come home and do it again the next day. But we were able to go stay with my mom Saturday night and then get up for the Easter bunny, run to the hospital for the day, and make it back to my mom's for dinner. It was a nice day. Now we wait for at least 21 days and do it again. Her counts will drop and she will have to watch for colds,etc. But it shouldn't be as bad as the last times.

Don did talk with the radiation onocoligist last week. He said that he would run some tests with Sarah to see if he can safely radiate the tumor bed without hurting her kidney. If he can, we would radiate for 2 weeks. He also said that he spoke with our surgeon, Dr.Lund, and he said that Sarah's surgery was the best total resection of neuroblastoma that he has done in his career. That really made our day, again!!! Things are going good. Thank you for your prayers, please continue, they are diffenitely working:)
love, Jackie

Wednesday, April 16, 2003 6:22 PM CDT

Hi everyone,
We just returned home from the hospital. Sarah started her maintenance chemo. It is an easier form. We were there for a total of 5 hours. Only one of the hours was for chemo, the other 4 was her hydration. She is handling it well and actually she and Catie are fighting over some dumb thing upstairs.:)
Our Dr. came in to meet with Don and I and go over the roadmap of Sarah's treatments. She will have maintenance for 3 rounds, 5 days long then off 21 days and 5 days, etc. Then she will do 2 weeks of spot radiation. It will be localized and they will be able to shield her kidney. This takes a total of 10 minutes for 5 days, then another 5 days for a total of 10 days. They want to do the radiation because it will kill any cells that want to find the tumor bed, as he called it. During all this time we will be going to the hospital and able to come home after treatment. Then the last treatment will be a pill form of retonic acid. A form of vitamin A. This will last for 6 months. And that is it! I asked the Dr. today what her prognoses looks like. He said," because it was incapsulated and was able to be taken out totally, we should never have to worry about neuroblastoma again!" He feels confident that Sarah will be fine. Thank you God!!!! He also said that Sarah is considered in remission because her tumor is gone. So, it looks like the worst is over and we can start to put our lives back together. Thank you everyone again, for your continued support and prayers. We wouldn't be here without you all.
Love, Jackie

Tuesday, April 15, 2003 4:07 PM CDT

Hi everyone!
The Dr. just called to say that Sarah is to start maintenance chemotherapy. We are all done with induction chemo. Maintenance is day treatment and lasts a couple of hours and is not as harsh on her. She should not get nausiated or have mouth sores like before. The chairperson agreed that she does not need induction because her tumor is gone and maintenance will kill any floating cells. I don't know a whole lot about maintenance but that it is for 5 days in a row, and for a couple of hours long and we are able to come home. Our Dr. will meet with Don and I tomorrow and talk about the future. We are so excitied but yet nervous. It seems like our safety net is starting to leave and we are set free. A friend of mine, whose son has cancer, talked about this feeling. I have to admit, it feels good to be almost done and with good standing. Take care everyone and I will write and let you all know how maintenance is going.
Love, Jackie

Monday, April 14, 2003 8:42 PM CDT

Hi all,
What a great weekend! The girls stayed with my brother and family and Don and I went to Lake Geneva, WI for the night. It was very nice and RELAXING:) The girls did well and we are ready to do this again!

Sarah went to school today and had a nice time. The Dr. called to say that we are to come in on Wednesday for her last induction chemo. But that the chairperson might change her mind and skip the last round of induction chemo, and head into the maintenance chemo. We will know more by Wednesday. Induction chemo is strong chemo that Sarah has been going through. Its job is to shrink and kill the tumor. Then after the 6 rounds of induction, there is radiation and stem cell transplant, and maintenance chemo. The Dr. also said that he is going to get ahold of the radiation cancer Dr. and see if he can safely radiate the vena cava without touching the right kidney. If he can, then we will radiate. If he can't safely radiate, we won't. Our Dr. feels confident that if we don't radiate, Sarah will still be ok because her tumor margin was dead (scar tissue). But if the radiation Dr. can do it, our Dr. feels that we should go ahead because then we are giving Sarah every possible chance that it won't come back. Maintencance chemo is 3 rounds for three weeks. I am not sure if it is a deal where Sarah goes to the hospital for the day to get treatment, then go home and in three weeks come back for the next round? It sounds that way. Our Dr. said he would talk to us this week about it more in depth. But the next news is wonderful! Sarah will not have to undergo the stem cell transplant. Her kidney function is not strong enough to tolerate the chemo and antibiotics. Our Dr. said today that he spoke to the stem cell Dr. and they agree that since Sarah's tumor was totally incapsulated and take out, she will not have to undergo this procedure. If there was still tumor in her, we would have no choice but to try to go through transplant. Thank You God! Sarah is so excitied that she will be with her friends and finish school. We are just elated to the fact that we can see the light at the end of this dark tunnel. Cancer can come back. We know we are not out of the woods because of this. Please pray that we never see this cancer again. We feel good. Not to get sappy, but spring is the time for rebirth and life and we feel that is what's happening to Sarah right now. I will let you all know this week what's happening to Sarah. Have a great Easter! And thank you all for your prayers and support.
Love, Jackie

Friday, April 11, 2003 9:23 PM CDT

Hi everyone,
Sarah had a great week at school. She went everyday and enjoyed herself immensely. Today she went on a fieldtrip and had a great time. After school we went to the local ice cream shop and had a malt with her friends. It is a great hang out. The weather was great, sunny, high of 72 and when we got home the girls went out to play and ride their bikes. It felt so good. Tomorrow the girls are going to my brother's and his family for a sleep over. Don and I are going to actually have some time together!! We are excitied. And the girls are excitied to go to Rob and Kathy's.

Sarah's bloodwork came back just fine today and her electrolytes are good. The Dr. wanted us to come back on Monday for chemo but the chairperson he needs to consult with, due to her kidney test being low and we need a different chemo, is not here. So now we are to come back on Wednesday the 16th. She is happy because she can surprise her class again.
I feel so blessed that Sarah is doing well and enjoying life. She appreciates what she has. Please keep her in your prayers, we are not out of the woods but we feel pretty good today:) Thanks again, Sincerely, Jackie

Tuesday, April 8, 2003 6:19 PM CDT

Hi everyone,
Our weekend was nice. Sarah did homework all day on Sunday to catch up to her class. She really wanted to go to school on Monday. So, on Monday she was awake at 6:30am to go to school! She had a good day and really enjoyed herself. Last night all 4 of us went to Madison and stayed at a hotel. It was a lot of fun, even though we didn't swim. Because of Sarah's hickman and incision she couldn't. Today Sarah and I went to the hospital for her tests. Don stayed back to swim with Catie and then they met us at noon.

Sarah's GFR kidney test shows a number of 52. It has to be at least 60 for her to have cisplatin chemotherapy. So, our Dr. is going to call the chairperson to find out what should be done. Her scheduled chemo is for Monday the 14th. We all met with her surgeon today and he said she was doing great. That the tumor had gone from a neuroblastoma (cancer) towards a ganglioblastoma (non-cancer) stage. That 15-30% of the tumor was cancerous. The margins of the tumor(the area around the tumor) showed no cancer. So our cancer Dr. wants to see the slides and talk to the pathologist more about what the margins looked like. Were they fiberous? This will help determine if we need to radiate. The tumor was sitting next to the vena cava and the surgeon thought we might have to radiate there, if at all. But the right kidney will be in the way and get affected by the radiation. And we don't want to hurt Sarah's kidneys anymore than we have too. Because her GFR kidney test was low, there is a good possibility that we can't do the stem cell transplant. After this last round of chemo, she will have another test to see what the number is and if it is over the 60, we can go ahead with transplant. But the last two times her numbers have been in the 50's. Our cancer Dr. said he feels good that no matter what happens with transplant, she will be ok. So now we are praying for the next round of chemo to go smoothly and that the pathology report shows that she does not need radiation. It is out of our hands. Don and I both feel that God will do what's meant to be. He has done a great job, so far!!:) We will know more on what to expect when Sarah goes back in next week for chemo. By then the cancer Dr. will have all his ducks in a row. For now, Sarah is glad to be home, and is ready to go to school tomorrow! Thank you everyone for your support!
Love, Jackie

Friday, April 4, 2003 9:17 PM CST

Hi All,
Things are going well, a little slow. I have been hooking her up to hydration at night just to make sure she is getting enough fluids. Sarah really is not eating, which as a mom is driving me nuts. She is starting to get an appetite so maybe she is coming around. We have been home and resting. Every once in awhile she will get enough energy to play with her polly pockets. Tonight we went to visit my brother and family. My nephew broke his ankle so the girls and I wanted to visit. Don had to work late tonight. We are looking forward to the weekend and all of us being together.

The nurse called yesturday with her counts and everthing looks good. We are to go to the hospital on Tuesday for her GFR test and then that afternoon we will visit the surgeon. He will then let us know when we can start chemo. The cancer Dr. is ready to start. We don't want to have any floating cancer cells attach themselves while we are waiting. I am so looking forward to when this is all over. As I sit and think about the last 6 months, I can't believe everything that has happened. The first couple of months I was in such shock, I really didn't think I could go through this. Then something clicked at the begining of the new year. Strength and fight from somewhere. Sarah's attitude changed and then mine changed. I guess that is what Dr.'s call, "acceptance." The Dr. told us in the begining that neuroblastoma is a very aggressive cancer with low survival rates. His statistic was 40% survival. He said he would not talk about statistics again. Every child is different, he said. We tried to keep this positive attitude and Sarah did too. She does not understand statistics and we of course never told her. The Dr. also said that with this cancer it spreads like wildfire and attaches itself to everything it comes in contact with. It has "feelers" and wraps itself around organs and blood vessels. And that usually with surgery, they can only get some of the cancer. This cancer likes the bones and bone marrow. If you ever read about neuroblastoma, it is very gloom and doom. I stayed away from the internet. I just couldn't let myself get more frightened. Then came our CT scan and bone scan. This was the second of each since our diagnoses. The bone scan still showed that there was no cancer in the bones and the CT scan showed shrinkage. It was wonderful news. Then last week the surgeon was able to take the whole tumor out, while it was incapsulated. It never attached itself to anything, it didn't spread anywhere, it stayed in place and behaved! Not typical neuroblastoma!! It grew from it's nervous system not the adrenal glandes. Staff from the hospital came in our room over the weekend and congratulated us, called it a miracle, one Dr. had tears of joy! What a journey these past 6 months have been. As one nurse said to me, "I can stop planning my daughters funeral." It has been an emotional time. I know we still have a fight on our hands. But there is less fear now. Sarah received a miracle, she beat odds, to this point. Miracles do happen. Having faith has been the foundation. Having all of you to be there in prayer and friendship has been so wonderful and comforting. I am sorry to go on and on, it's just one of those nights:) I am sitting here alone and reflecting. Thank you all again.

More good news came today from a friend whose son has wilms cancer, the CT scan showed no more evidence of the cancer. Best wishes dear Ben!!

Love, Jackie

Tuesday, April 1, 2003 10:12 PM CST

We are home!!! We got home about 9pm. Sarah is doing better. She came home with fluids at nighttime. And we have to work on her eating and drinking. She is in better spirits. She is excitied to go back to school. We are going to wait a couple days though.

We go back next Tuesday for a GFR, kidney test, to check her kidneys for chemo. Then in a couple weeks we are due for a check up with the surgeon to see her site. He will be the one to give the okay for when she can do the next round of chemo. So the good news is that we have a couple weeks, at least, to play and enjoy ourselves.:)

I really enjoy reading everyone's emails and guest book entries. Thank you very much for your support. Again, today, a nurse practioner came in to say that what happened to Sarah is a miracle! One nurse came in to tell Don that the tumor was incapsulated. That the Dr.'s are still talking about it in rounds. What can we say, with all the people around the country praying for Sarah, how could we go wrong??:) Again, thank you, thank you, thank you!!!
Love, Jackie

Sunday, March 30, 2003 4:29 PM CST

Hi everyone,
We are still at the hospital. Sarah is doing wonderful. Yesturday, I pulled her NG tube out and her foley. It was time to pull them and she was scared to have it done. She thought it would hurt, so I was talking to her and grabed on to the NG tube and pulled. It came out real fast and does not hurt. She was very surprised!! Then when it came time to do the foley, she wanted me to do that. What the heck, that came out fast and easy too.:) I am considering in becoming a nurse, HA! HA! We got her in a wheelchair and went to the rec. room to make tote bags.

Today she got up to take a ride in the wheelchair. The surgeon was impressed. She asked when she could go home. She has a concert Wednesday night to go to. He said if she starts to pass some gas and maybe have a bowel movement she could go home tomorrow. So, she asked him if it was ok for a McDonalds breakfast sandwich because that would do the trick!! He laughed and sent Don on his way to McDonalds! (Sarah was on a clear liquid diet, which she hates) She has a good sense of humor. Catie and I came home today and we will pick Don and Sarah up tomorrow. She needs a blood transfusion tonight. The Dr. took her off her morphine button, and she is on tylenol with codine. She is very excitied about coming home. And she is very happy about her tumor being out. She likes to look at the picture of it and show anyone who comes in our room.

I am not sure what the plan is from here. I do believe one more round of chemo just to make sure. Her primary oncologist was gone last week and will return tomorrow. I am excitied to hear what he thinks about everything. I will keep you informed. Thank you everybody for your support and prayers. Sarah would not be this far without all of your help and we truley believe that!!! God bless you all!
Love, Jackie

Friday, March 28, 2003 8:44 PM CST

Hi everyone,
We are still flying high around here!! Sarah is still at the hospital and probably won't come home until Monday. Tonight she was sitting up in her bed and wanted to color. The surgeon came in today and handed us our cd with Sarah's tumor on it. He took 6 pictures of it. Two were of the ct scan, two were of the tumor while it was inside her(that was interesting:) and the last two was the tumor sitting on a tray. He had a ruler next to it and it showed to be 6 inches long. Our surgeon was able to take the whole tumor out intact. The staff at the hospital today were very happy and overjoyed for us. Our oncologist came in to say hi and congratulations! She said that she is very confident in Sarah's prognoses and if Sarah can't do a stem cell transplant because of her kidneys, the Dr. still feels confident that Sarah will be fine. The most important thing is that her tumor is all out and there was no spreading. One nurse practioner came in to ask, What prayer chain we were on, because she wanted to be on it too." She said for a 6 year old with neuroblastoma, to have an operation where it can be totally taken out, and have it grown out of her nervous system and not her adrenal glandes is a miracle. A 6 year old is considered old to have neuroblastoma. We are so happy and grateful. There is so much to be thankful for. I know we are not out of the woods, but we are pretty close!:) Thank you for your continued prayers. Always have faith and believe in miracles:)
Love, Jackie

Thursday, March 27, 2003 6:51 PM CST

Hi everyone,
It's over!!!!!!!!!!! Sarah went in for surgery at 12:45pm and the Dr. said it would take about 4-5 hours. At 3:30 the Dr. came in and said it was over. That it went real well and he got it ALL!!!!!!!!!!!!!!!!!!!!! We are so excitied.:) She is resting. They brought her back up to her room, she didn't even have to go to the ICU. We feel so blessed. She has a nose tube to suction out her tummy. This helps with nausea. And she has a foley. This way she does not have to get up to use the bathroom. Everything looks good. They could not give her the tumor for show-n-tell but our surgeon took pictures and put them on a disk so we can put them on our web site!!!!!! Well, I will write later. I need to go back with Sarah. Don is with her now too. Anyway, thank you everybody for your continued prayers and support. Our prayers are being answered!!!!
Sincerely, Jackie

Tuesday, March 25, 2003 10:16 AM CST

Hi everyone,
We had a wonderful, busy weekend. Don and Sarah made it home on Saturday around noon. The girls were happy to be together and they just played. On Sunday, we had a warm spring day. My brother and his family came up to visit. My nephew is three and the kids enjoy playing together. We went to a couple parks that are walking distance, while the kids rode their bikes. Sarah really got a workout! After laying in the hospital for 10 days and then going full force out playing. But it did feel good. Then yesturday, Sarah's classmates got together at McDonalds to play and see Sarah. The school is on their spring break. It was a nice time. Even her teacher made a point to come visit her their. It is so comforting to know the class hasn't forgotten Sarah. It really is very wonderful. I know as she gets older and understands the magnitude of this, she will be very greatful. We did get to see the Piglet movie last night. We waited to go when Don got off work. We were the only ones in the theater, when in comes one of her classmates and his dad. We had a nice time. Today we are going to babysit a little girl, 5 months old, named, Anna. She is a very beautiful little girl. Sarah and Catie have attached themselves to her. She is the sister of one of Sarah's classmate, and a good friend of the family.

Well now for the news. We are going to UW tomorrow. But surgery has been changed to THURSDAY. Tomorrow we will find out the time and what to expect, etc. I am excitied but also very nervous all of a sudden. I am trying to act like it isn't a big deal around Sarah. I want her to be relaxed. She is doing very well. She is excitied that in just a couple days she will be "cancer free." I wish it was all over and I was typing to say how it went.:)

Please remember Sarah on Thursday, thank you. I will write thursday after surgery to let you all know what's up.
Sincerely, Jackie

Friday, March 21, 2003 4:08 PM CST

Hi all,
Don and Sarah are still at the hospital. She is to come home tomorrow, Sat. She is in good spirits and is anxious to be home and see Catie. Don called this morning to say that the Surgeon looked at the ct scan and feels that he will be able to get it all!!!!!!!!! Yeah!!! Surgery is still on for Wednesday the 26th. When Don told me the news, I could hear Sarah in the background yelling," yeah!" And hooting it up! She is excitied too. After the surgery she will go ahead with another round of chemo. Her last chemo treatment:) This is to kill any cells that are floating around. This last treatment is hard on the kidneys so we have to have another kidney test to make sure she can have the drug. Or they may lower the dose? We will get past surgery first, then figure out what is next:) We are all so happy and positive. And extrememly emotional!!! A lot has happened in the last 5 months and Sarah has come a long way. We honestly believe that Sarah is making such fine progress with the help of you all. Your support and prayers are deeply appreciated. Thank you.

We are excitied to get Don and Sarah home and spend some quality time together and see the Piglet movie in the theater. Take care and I will write next week.
Sincerely, Jackie

Thursday, March 20, 2003 7:36 PM CST

Hi everyone,
Today Sarah had her tests. Her first test was the ct scan and then the bone scan. The bone scan looked fine, still no cancer in the bones!!!!!!!!! The ct scan was the second one she had, the first one was on diagnoses. The ct scan showed that the chemo has worked. That the tumor has shrunk down to 1/5 of its original size!!!!!!!!! So now the Dr. and the surgeon are discussing if they should do one more round of chemo to shrink it somemore, since she had good response to chemo, or to take the tumor out next week Wednesday. We are all very greatful for the news. One thing that I am questioning is that the tumor was dying before we started treatment. The surgeon found that out when her went in for a biopsy. On the ct scan it can not display if the tumor is alive or dead. There might be a possibility that this 1/5 left could be the dead tissue?? We are going to ask the Dr. when we have our conference. That would be wonderful news. But even if it is alive, it is wonderful that it has shrunk down to that small. It is because you all prayed and thought of her during this time. Thank you.

Sarah is still in the hospital, but is doing well. We should be home by the weekend. She probably will need a blood transfusion tomorrow. She is excitied to come home. Catie is excitied to see her too!
Thank you all again. I will let you all know what Sarah's next step is in her treatment. Take care.
Sincerely, Jackie

Wednesday, March 19, 2003 6:49 PM CST

Hi all,
We are still at UW hospital. Sarah is feeling better today. The mouth sores have gone away!!!!:) She is starting to eat again. Her counts are still low, so she still has to wear a mask when we leave her room. But at least she is leaving her room to go to the art room or to take a walk. Tomorrow is her ct scan and bone scan. I am anxious about it , just to see the results. Having those scans are easy, just time consuming. Don is coming up tomorrow to be with us when she goes through the tests. Please help pray that the results are favorable. Thank you! Sarah should be home by the weekend. She is looking forward to taking care of her cousin, Andrew, and seeing the Piglet movie. And to see what her cousin, Kelly, bought her from her trip. I think these were the things that helped her speed up her recovery. I will let you all know what we find out tomorrow on Friday. Thank you all for your prayers tomorrow, she starts the scans at 10:30am.
Sincerely, Jackie

Sunday, March 16, 2003 11:30 AM CST

HI everyone,
We are still at the UW hospital. Sarah has mouth and throat sores from her last round of chemo. So eating and drinking is hard. She is on morphine for pain. She has had this before around Christmas time. It is hard. We are trying to keep her spirits up. Don and Catie have been here all weekend and staying at the Ronald McDonald house. Thank goodness for the RMH. Last night Catie and I stayed at the RMH. It is a nice place to go for some real rest.:)

Sarah had a reaction to her pain medication on Friday night. Too much was given and she had a hard time breating. She was put on oxygen and I stayed awake all night and watched her and read her pulse meter to make sure she was getting enough oxygen. Finally around 6am the medicine had passed through and she fell asleep. It was scarey. I am thankful that it was noticed. Don came over that morning and I went to the RMH to sleep. Things are fine, still has pain but we are very cautious on what she gets and how much. She slept through last night fine without problems. I am thankful for that. She has had a blood transfusion and platelet transfusion so far. Very typical for her. She will probably have another before we go home. She is scheduled for a bone scan and ct scan on Thursday if she feels better. This will determine her size of the tumor. The bone scan is just to make sure it still is not in the bones. And then on Wednesday the 26th, she is scheduled for surgery to try to take out the tumor. I am so nervous. I want the surgery, of course to get it out of there. But it is a big procedure. Chemotherapy we were getting used to. We knew what to expect and we knew what to look for. Now here is something new to go through. I pray for no complications!!! She has a very excellent surgeon, Dr. Lund, from Boston. He did her biopsy in November. Her scar is looking so good. Even nurses have made the comment that he did a nice job on Sarah's cut. He is highly recommended and that helps me feel better. I hate to see her go through the pain. Leaving her with the Dr.'s is so hard. They do let us stay with her until she "falls asleep" which is nice. She thinks we will be with her the whole time. We are finally at the end of procedures but they are the big ones.

My heart aches and I feel so scared. I do believe in the power of prayer and I beg you all to please pray for her so that she will come through this without any problems. Thank you so much.
Sincerely, Jackie

Thursday, March 13, 2003 7:28 PM CST

Hi everyone,
Well Don just took Sarah back to UW because she had a fever of 100.4 at home. Her blood counts came back and she has no white blood cells. So whenever her white blood cells are 0.0 and she has a temp of 100.4 she has to go in. She was terribly upset. She has 3 mouth sores. She gets those with the drugs from the last round of chemo. So this is typical. On her next round she will have a different set of drugs. Those typically don't give her the sores. I have a cold so I can't be up near her. She is very upset about that. And that makes me upset.:( She is put in "isolation" where she can't receive visitors. And she can only leave her room to go to school or in the hepa filtered hallway. When she does walk out into these areas she has to wear a mask. But the strange thing was that when she arrived at UW, her temp was 100.1 and then 99.8 and at 7pm it was 98.6! But they are keeping her to watch the blood cultures that they took and to watch her temp. I feel so bad for her. She wanted to stay home so badly. Her spirit was broken when they left tonight. Now I sit here and worry. This is one of those hard times to go through. Please pray that she heals quickly. She just wants to come home and for all of us to be together. Thank you so much for your concern.
Sincerely,
Jackie

Tuesday, March 11, 2003 9:14 PM CST

Hi everyone!
Things are still going good. Sarah had a little nausea last night. I hooked her up to some fluids overnight and she did just fine. Today she was a little tired. Her grandparents came up for dinner and a visit. We had a nice time. We grilled out her favorite, brats.:)
Tommorow she is looking forward to seeing her teacher. She is coming for a visit after school.

I forgot to mention that Sarah has had some high pitch hearing loss when she took a hearing test last week at the hospital. It is perminent. The last round of chemo (#4) had some hard drugs that can affect the hearing and kidneys. She will get these drugs again on her last round #6. She still has good spirits and feels good, overall. She asked me tonight when her tastebuds were going to come back? I hope soon. Although she is eating and even though she may not really want to eat, she is making herself eat. She knows she needs to do this. She is rally trying to do the right thing when it comes to helping herself. She amazes me that a 6 year old girl has this much strength. Well things are going good, just taking one day at a time. Hoping that as each day goes by, she is able to stay home and not get a fever or virus. Please continue your prayers. Thank you all so much. It feels great to know that you all are there for us. No matter where you live. Please pray for a miracle that all goes well. Thank you:)
Sincerely, Jackie

Hi Marilyn in Caz!!

Sunday, March 9, 2003 11:38 AM CST

Hi everyone! We are home! we arrived home at 11am. Sarah was done with chemo last night around 10pm then she had her blood transfusion. All this happened while she slept. I was awake to make sure all went well. She is feeling good and wants to go sledding with our new snow!! It is cold but we are going because her counts will be dropping and we will have to stay home. She feels great! I hope and pray that all continues to go well. Got to run, I guess we are leaving to go sledding NOW!!:) Take care everyone, thank you for your prayers. They are working!!!!!!!!!!:)
Sincerely, Jackie

Saturday, March 8, 2003 2:48 PM CST

Hi everyone,
We are still at the hospital. Things are going well. Sarah's chemo will end tonight around 10pm. Then we will have a blood transfusion. We will be able to go home tomorrow morning. The slumber parties went well. Don and Catie went home last night so they could get a good night sleep. Uncle Rob and Andrew came up last night for a pizza party. It was nice. We are now in the art room waiting for Don and Catie to come up for supper.
Sarah is scheduled for a Ct scan on the 20th. We will then know what her tumor looks like by comparing it to the first set of scans. I pray that it has shrunk down to nothing.:) The Dr. and nurses are impressed on how well she looks and feels. That makes me feel good too!!! I will let you all know how we are doing when we get home. Thanks for caring and for the support.
Sincerely, Jackie

Saturday, March 8, 2003 2:48 PM CST

Friday, March 7, 2003 10:49 PM CST

Hi everyone,
We are at the hospital. Chemo is going well. Sarah is a little tired today. She had some visitors, my brother and his son came up to surprise us. We had a pizza party:) Don and Catie went home tonight. Catie has stayed two nights here and we felt she needed to get some real rest at home. She did not want to leave her sister. They will be back tomorrow. Sarah's chemo will finish tomorrow night at 10pm then she will have a blood transfusion while she is sleeping. We can go home Sunday morning. She is doing good. What a trooper:) There are so many children up here this week. A lot of new diagnoses. It is sad and brings back a lot of memories of our first stay up here. It seems like so long ago. Four months ago today, Sarah had her hickman central line placed. The time does go by fast. Thank you for the support and prayers. Thank you for caring and thinking of Sarah. It will be faith that gets her through this.
Sincerely, Jackie

Thursday, March 6, 2003 5:08 PM CST

Hello from UW hospital,
On Wednesday, Sarah, Catie and I went to the hospital so that Sarah could start her 5th round of chemo. On the way to the hospital, we got stuck in traffic near the university. A very large group of people were walking down the street protesting war. The girls thought it was a parade and were waiting for the bands to come. Oh yeah, it was exciting!
Chemo started at 10pm!! I really don't know why it takes so long to get things going. But she is doing well. A little tired today. We had a nice time having a "slumber party". Tonight Don and the girls are having a slumber party. We should be back home on Sunday. She is scheduled for her Ct scan on the 20th. The Dr.'s and nurses are impressed on how well she looks, her positive attitude and smiley face. She really doesn't look "sick". If it wasn't for her hair, you would never know. She is very strong and we have learned a lot about her during this time. I am thankful she has a sense of humor. That helps soooo much.:) Of course we know that we could never get to where we are now,without all of the people who care and pray for us. I honestly do not know how people go through difficult times, without some sort of faith. Thank you all again for your support.
Sincerely, Jackie

Tuesday, March 4, 2003 8:27 PM CST

Hi everyone!
Today Sarah went to school and had a very nice time. I drew her blood and the counts were mixed. So after school I re-drew them to see what was happening. The resident Dr. I spoke with tonight said that everything looked good to come in tomorrow for chemo. But her red blood was a little low, maybe we will just do a transfusion. So, tomorrow morning I am going to call before I leave to ask our other Dr.'s opinion. I just want to know for sure before I pack everything.

Tonight the girls went outside to play in the snow. We must have at least 6 inches and it is still coming down. The fresh air is good for them. Especially since we might be stuck inside for a few days. Today at school she told her teacher she is bringing a chunk of her tumor in a baby food jar for show-n-tell. The class is working on the letter T this week. I hope the Dr. has a sense of humor about that. But she is serious. She is also bringing a camera that we received as a gift from our secret santa, to the hospital. She wants to take pictures of the hospital, room, friends, Dr. etc. to show the classmates back home. I am bringing the video camera to make a mini-movie of what Sarah's day consists of to show her class. She is excitied about that. I think it will be interesting and may answer some questions her classmates have. It will also be a neat keepsake for her to watch in the future. It looks like Catie is going to the hospital with us tomorrow for another sleepover. I think we started something.:) We had to go to the grocery store tonight and pick up some "goodies" to take with us.

It sounds like everything is going well and Sarah has a good attitude. I am nervous. Here we go again for another round. But after this round she has one more and she should be done with chemo. Please pray that all goes well with this round. It will be a continuous 72 hour drip of chemo. Three different chemo drugs at one time. It is scarey to watch and yet I know I have to be positive that this is what is killing the cancer. Sarah will have a hearing test to determine if any hearing loss occured while she had the last round of chemo. Please pray for good results.:) Well I will go for now. I can't ask enough to please continue to pray for Sarah. This month is going to be tough. Along with chemo and tests there will be surgery. She is scheduled for a CT scan on the 10th. This will show how the tumor looks before surgery. I pray it has shrunk down to nothing!! That it can easily be taken out. A lot to worry about and think about. Yet put on a Happy, cheerful face in front of Sarah so she doesn't worry. She feeds off of Don and my emotions. I do a lot of crying in the shower. Well take care everyone. Thank you for caring. And look at our new pictures. Sarah picked these out last night.
Sincerely, Jackie

Monday, March 3, 2003 12:59 AM CST

Hi everyone!
We had a nice weekend home. Catie felt a little tired and we thought maybe she was coming down with something but nothing yet.:) Today Sarah is in school. She was up at 7am and asked me what her kids were doing? I said her kids were still sleeping! She was so excitied to get to school and surprise her teacher. Catie and I volunteered as the lunch helpers today because the helper was out sick. It was just like old times. Tomorrow, Sarah will go to school again and if her counts are ready, we will go to UW hospital on Wednesday. I heard today that she is inviting kids to come up to see her...Wouldn't she be surprised if they came!! Maybe we can work something out?? We are having an enjoyable time. Sarah has started to pack a few things again for her stay. She will be gone for about 4 days. Maybe we will be home on Sunday. Then we start the whole process over with her counts dropping and staying inside, etc.

I will let you all know what her counts are tomorrow. It is bittersweet, I want to stay home but I also want to get things moving again with the cancer. To see her now, you would not know she is sick. Except for the hair loss. I even weighed her today and she has GAINED 3 pounds, on her own. This is very good. I do have to partially thank Burger King. She enjoys their hamburgers.:) Thanks for the emails and thoughts, prayers.
Sincerely, Jackie

Thursday, February 27, 2003 3:10 PM CST

Hi everyone,
Since the last time I wrote, Sarah has been doing great! We found out her platelets and red blood cells were low, but that the Dr. didn't want to transfuse her. He wanted to let her body do it on her own. That way it would show when Sarah is truly ready for more chemo. So Tuesday morning the girls and I went to my mom's house to visit. It was a nice time and enjoyed by all of us. We came home last night(Wed.) because I had to draw blood from Sarah today. Catie went to preschool and Sarah stayed for awhile with her. Then we dropped off her blood and ran errands. After we picked up Catie, we went to play with some friends. It was an enjoyable day. Again, we feel so blessed to have another good day. We got home to hear the phone ring with our new counts....Sarah still is not ready to have chemo. So we have the weekend to ourselves again!!! I am supposed to have her blood drawn Tuesday and if it is good then, we are scheduled for chemo on Wednesday the 5th of March. Sarah is so happy. Two more days she can go to school and see her friends. You may be wondering how this affects the tumor? It is a fine balance, the cancer could just perk up and start growing. But if her body is telling us that she can't handle the treatment, we have to be safe that way too. I am hoping that because it is after her 4th round of chemo that her tumor has been hit HARD and stays quiet. I wish it would just go away. But in neuroblastoma, it just doesn't go away.

Today Mr. Rogers died. I read it in the paper to Sarah and it stated that her died of stomach cancer. She handled it pretty well. She simply said, " it is pretty sad that he is dead, he is now an angel." And Mr. Rogers takes care of little children, he can watch over me." I have a pretty wonderful little girl.:) (Two wonderful girls)

Take care, thanks for reading and especially your prayers. We couldn't have gotten this far without you all. I really mean it.
Love, Jackie

Hi to Kate:)

Monday, February 24, 2003 11:28 PM CST

Hi there,
Today we had to do Sarah's bloodwork twice. After we received the first results, the Dr. thought that there might be a mistake. Her red blood and platelets were low. So, we drew more blood and the results were the same. The results came in tonight so the Dr. has not seen them. One thing for sure, there will be no chemo until her counts come up. We may go in for a transfusion but the nurse practioner said the Dr. will probably want Sarah to recoop and rebuild her counts on her own. This happened to her last month. We stayed home for a week last time! So, tomorrow I will wait to hear from UW.

Please pray for Sarah:)
Sincerely, Jackie

Sunday, February 23, 2003 6:02 PM CST

Hello,
Boy the weekend flew by fast. We had a nice time and enjoyed our time at home. We were visited by family all weekend. We had a great time! My brother and family came over on Friday night. The girls enjoyed playing with their cousin, Drew. On Saturday grandma and grandpa came over for dinner. Catie is grandpa's girl and enjoys snuggling by him. Today was a nice treat with Don's brother, Jim, and his daughters came up for lunch and a visit. His daughters are in their twenties but Sarah and Catie absolutely adore them. We brought out the Barbie karaoke machine and the girls(all 4) entertained us through the afternoon. Then we brought out the Barbie dance mat. Even Don got into that one! I, of course, did not have any film!!! Sarah is feeling good and being with people who love her make her feel so much better! I even got a call from our local Dr. today to see how Sarah is feeling and how we all are doing. I thought that was pretty nice. Especially since today is Sunday, and his is not working. Sarah woke up this morning and finished her homework. She is ready to go to school tomorrow. I wish I could stop time and just enjoy this for awhile longer. She has a very good attitude about going back to the hospital. She has even packed a few things already. Our Dr. said today, that children do much better going through cancer compared to adults. It is because of their attitude. Kids go with the flow easier. Sarah has given me strength. When she feels good, I feel good. Luckily, she has been feeling good a lot lately.:) I have seen a side of Sarah that I didn't know existed. She is a strong, brave, fighter, that is not afraid to say what she needs to when she gets pushed. Very good traits that will keep her going for a LONG time!!!!

I know I am rambling, but writing in this journal helps me to think about things, appreciate our day, appreciate my family. This website was meant to keep "important" updates so that everyone knew what was going on. But now it has become my journal and it has been theraputic in many ways.
Thanks for reading, thinking and praying for Sarah. We feel blessed by you all.
Sincerely, Jackie

Saturday, February 22, 2003 9:30 AM CST

Hello everyone,
Yesturday was a lot of fun. Sarah, Catie and I went to the park and enjoyed the warm weather. A whole high of 43 degrees. Then we went to school to say hi. The children were excitied to see Sarah and Sarah was very happy to see them. She really shines when she can be with her friends. When we arrived at school it was afternoon recess. As Sarah walked toward the swing, kids from all over came to greet her. All I could see was a mob of children and smiles all over. I started to cry, even the recess teacher had tears. Going to school and seeing the children and teachers, is the BEST medicine she could have. Even Catie enjoys hanging out with her friends and everyone accepts Catie too. This fall when Catie starts kindergarten, she will be an old pro. We said our good byes again to everyone as we were expecting to go back to the hospital for chemo on Monday. When we arrived home, there was a message from our DR. that we should stay home Monday and have her blood work done (which I do at home now) and we will take it from there. So, Sarah was excitied. She said I can go to school!! Her poor teacher, she never knows when we are coming or going. But she is great!:)

The tooth fairy came again last night. I think we are good for a couple months. Last night my brother, his wife and son came up to visit. My nephew makes the girls laugh and they enjoy him so much. Sarah likes to hang out with my brother. He is a kid at heart. And Aunt Kathy is fun because she likes to play games with Sarah.

Things seem to be going well today. I will type when we find out what we are doing for chemo. Take care everyone.
Sincerely, Jackie

Thursday, February 20, 2003 3:37 PM CST

Hello,
We just returned home from doing blood work and having her kidney test. The good news is that Sarah's counts are up and she is able to go to school tomorrow! We were able to stay home the entire time from the hospital to recoop from chemo. This was a first. She will go back on Monday the 24th for her next round of chemo. The test result from the GFR came back and her number was a 56. She needed to be at least a 60. So she won't have the cisplatin chemo this next time, we will go back with the other chemo she is used to and it is not harmful to the kidneys. Her Dr. feels her kidneys will heal again but it was just too soon. We are ok with that. The one thing that scares me of this chemo treatment is that Sarah has had mucisitis(mouth sores and throat sores). It is not a good time. I am praying that this time will be different.:) It is always scarey to watch the chemo go into her line. She is hooked up for 72 hours straight. I am anxious to see her next CT scan to see if there is any change. It is scheduled for the 10th.

Don is on call from work this weekend so we will be spending a nice quiet weekend home before we have to go back on Monday. Please pray that Sarah does well with this chemo and the sores stay away. They are very painful. I will type and let you all know how it is going next week. Thank you all for your continued support. We can not thank you enough.
Sincerely, Jackie

Wednesday, February 19, 2003 1:41 PM CST

Hi everyone,
Sarah is doing real well. She is going to have a test done tomorrow, called a GFR. It is the one that tests her kidney output. She looks like maybe she might need more blood. She has dark circles around her eyes. I know she is not dehydrated so we will see tomorrow. We may have to stay longer and have a transfusion. They are so common to her now. Her counts are low still. But she really wanted to get out of the house yesturday. She wanted to drop off her homework and get some new. She is concerned that she will fall behind her class. She had to wear a mask, which she didn't mind. We were only there for a few minutes. I respect her self esteem. I pobably would have stayed in the house instead of wearing a mask.:) She did fine and of course, her friends were fine with it. Yesturday the girls and I were looking in their baby books. I have been faithful keeping up with new things. I had to add Sarah's tooth falling out. Anyway, in the girls books, I wrote them each a letter at birth and sealed it and placed it in their books. I opened Sarah's and read it, of course sobbing all the way through. In the letter I wrote how I found out I was pregnant on Febuary 18th 1996. That was yesturdays date. How funny:) I remember that year like it was yesturday. On the 24th of Febuary 1996, my dad had his terrible stroke. He is very missed. Sarah talks about him all the time, which makes me feel happy. Take care everyone and I will type soon.
Sincerely, Jackie

ps If Sara R from St. Joe's sees this...what is your email address???:)

Monday, February 17, 2003 10:42 AM CST

Hi everyone,
We got home last night around 5pm. Sarah sailed through transfusions well. We are thankful. Today she is feeling good. It is funny what a little blood can do for ya. I am glad she got some platelets yesturday because she lost a tooth this morning. She "thinks" the toothfairy should bring $15! Don told her the economy is bad now so don't expect the toothfairy to bring that amount:) She has two other loose teeth. Today she wants to make chocolate chip cookies, so that sounds good. We are enjoying ourselves and even though she is neutrapenic, she feels good. Thank you to everyone for the wonderful messages in our guestbook.
Sincerely, Jackie

Please continue to pray for Sarah that all goes well.:)

Sunday, February 16, 2003 11:24 AM CST

Hello from UW hospital!!!
Sarah is only here for a blood transfusion and platelet transfusion then we get to go home. She is doing very well considering how low her counts are. We feel very blessed that all is going smoothly. (knock on wood:)
Even the Dr. and nurses are surprised. As I type, she is sitting here next to me in the art room, of course. She is making some pictures to send in to a group for cancer kids that make their artwork into calendars, cards, tee shirts, etc. A friend of mine, Michelle, sent me the information on it. Thanks Michelle:) Catie came up with us today to be with Sarah. She is very protective of Sarah. She tells the nurses what to do. For those of you that know Catie, you know what I mean. But I wouldn't trade that trait for the world. I am so glad that they are close. Don is on call this weekend with his job. Sarah's platelets have arrived so we have to go back into her room to get hooked up. Take care everyone and I will type later.
Sincerely, Jackie

Thursday, February 13, 2003 2:23 PM CST

Hi friends and family,
Sarah went for her blood work today and she is low. So now we keep her in a bubble and pray she does not catch anything.:) We take precautions by not letting people come over, clean house and WASH HANDS. She is in good spirits, just tired. After getting her labs drawn, we took a little ride around town. She likes to look at her school, downtown, etc. She asks me a few times a day,"Now what are my classmates doing?" Tomorrow is her Valentine party and she won't be able to make it. She is disappointed. But her teacher, Mrs. V said she will stop by with her goodies. She is an excellent teacher, we have been blessed to have her.
UW hospital just called to explain something to me. I will try to explain it to you all. When Sarah was first diagnosed, she was put on a study to see if she would be randomized by a computer to have her stem cells purged in California. Remember something about that? We thought that having them purged was an excellent idea because it meant that there was no cancer in the cells when it would be transplanted back in. But because Sarah did not have enough stem cells at collection we were bumped off the study. I wasn't too disappointed because Sarah's marrow came back clean. (it has been checked twice, once at diagnoses and a second time a couple weeks ago.) But there was still a hint of "what if" in the back of my mind, because I assumed that having stem cells purged was the way to go. Last Sunday when we went to UW for hydration, our DR. said that our treatment plan has been stopped. That he didn't know why but the childrens onocolgy group had stopped it. Today we get the call why. The FDA has stopped California Lab from purging stem cells because there has been contamination in the cells that would be brought back for transplant. It turns out that getting them purged might not be so good. They have to work out the "bugs." So, if Sarah would have had enough stem cells at collection, hers would've been sent to California before the FDA stopped it. Maybe hers would've been contaminated?? I really think someone is looking out for Sarah:) There have been other instances where we were supposed to do something or have something done and it didn't work out. But it has always been to our advantage. Although at the time it does not feel that way. It is times like this where my faith just gets that much stronger. Thank you to everybody who has prayed for Sarah. It is working:) I know her guardian angel, my dad, will also help keep her safe.
Bless you all,
Jackie
HAPPY VALENTINES DAY!!!

Wednesday, February 12, 2003 7:42 PM CST

HI friends and family,
We are still at home!! Sarah is doing ok, just tired. She rests a lot and we watch a lot of movies. Don was home today not feeling good. I hope it is nothing catchy. I have tried to keep the girls away from him all day. Tomorrow we go to get Sarah's blood drawn for labs. We will see if her counts are still falling. Really nothing new has happened. Just taking it day by day. We added a few pictures today to the website. I still have Christmas in our camera. I will update to more recent pictures soon. It takes me awhile.:) Have a good day!
Sincerely, Jackie

Monday, February 10, 2003 2:11 PM CST

Hello,
Yesturday Sarah felt real tired and complained of her head hurting. She wasn't drinking and at times would get sick. So off to Madison we went. Once we arrived, we met our Dr. in the hallway. They said instead of getting admitted, lets give her some tylenol for her headache and see if she will drink some water and keep it down. It seemed to work. We think the headaches are from the anti-nausea medication called, zofran. We were able to come home last night around 6pm. Then we hooked Sarah up to hydration here at our house while she slept. I think Sarah would have put up with any pains, just as long as she could come home.:) Last night around 7pm she perked up and wanted to make her valentines out for her class. She did real well overnight and slept in this morning. We had to have our blood drawn this morning and we are waiting to see the results. Because of her not feeling the greatest, we postponed the urine test and GFR kidney test. We are scheduled to go back on the 24th for chemo #5. Then surgery will follow. I went to our hometown hospital today to get another copy of Sarah's CT. It read that her tumor is 6.6cm or around 3 inches, and pushing against her right kidney. It also said that her pancrease, liver, kidney, bladder all looked fine. That was positive.:) Even though I know the tumor has not spread, I still like hearing it. I try to find one positive a day. There is a lot of negatives or worries to think about and hear, so I TRY to remember the positives of this cancer. Today Sarah feels better. She is playing and fighting with Catie.:) She wanted to go to school and see her friends and teacher. I have to wait until her blood counts are high enough to fight off infections and colds. This is a time after chemo called, nadir or neutrapenic. I think I spelled that right.
It lasts a couple of weeks for Sarah. Her blood levels are low. We usually get a blood transfusion and platelet transfusions. She has to wear a mask if we go outside. We typically don't go anywhere. I have my thermometer out ready to take a temp. Anything over 100.4, off we go to the hospital. Her bone marrow is wiped out and trying to make fresh. Some kids bounce back faster from making marrow than others. Sarah is slower. And each time she has chemo it takes that much longer to recover. Well, there you go, your chemotherapy lesson for the day!:) It is so wonderful to hear from you all. It really brightens my day:)
Thanks, Jackie

Sunday, February 9, 2003 0:13 AM CST

Tonight Sarah and I went to the Fort hospital to get some fluids in her. She was borderline dehydrated and her onocoligist wanted to have her labs drawn while we were there. Her counts are still ok. They haven't fallen yet but it has only been a day since chemo. She is experiencing dizziness and headaches. Sarah is really tired and just took it easy today watching videos. Hopefully tomorrow will be a better day for her. I hope the headaches and dizziness goes away soon!
Take care everyone!
Sincerely, Jackie

Friday, February 7, 2003 8:26 PM CST

Hi all!
We are at home again.:) Sarah had her stitches taken out today from her hickman (central line). It was placed back in November but the Dr. likes to keep them in for awhile. Then we were able to come home. Sarah is feeling a little tired, not hungry or thirsty(we have to watch that for dehydration) and she is vomitting. This is the worse part of chemo. But she did real well. Hopefully getting sick won't last too long. I have to collect a 24 hour urine on Sarah starting Sunday. It will detect her kidney function. Then Monday, Sarah and I will spend the night at the mcDonald house because we have to be at the hospital on Tuesday at 6:30am for another kidney test. We will be back home that afternoon baring any problems. Her next round of chemo is scheduled for the 24th. If her kidneys are good we will do the same chemo drugs we just finished. After round 5 Sarah will have a CT scan to see how the tumor has shrunk. She does not have it in her bones or marrow or in any organs or lymph nodes. Thank God!!! That is so promising. After the scans she will have her surgery to get what they can take out. Oh how I pray for all of it to be taken out. Then Sarah will have round 6 of chemo and then her "conditioning" which is 96 hours of very toxic chemo that will take her into her transplant. Our Dr. said last night that if her kidneys don't look good at that time we will not go through with the transplant. This is one of those times when I feel so out of control and helpless. It is in God's hands. It is getting so close now to these "scarey" procedures. I am so nervous and scared. I do thank everyone for your prayers. Thank you all for your support.
Sincerely, Jackie

Thursday, February 6, 2003 2:49 PM CST

Hello everyone,
As of last night, Sarah started to "slow" down. The nausea and diareah has set in. She is trying to fight it and this afternoon went to school. She is tired but is excitied because Catie and her dad are coming tonight for a slumber party. Yesturday when we went to the gift shop, Sarah had to buy Catie a stuff dog and bear. The girls really miss eachother. Tonight, I hope, perks up her spirits.:) We got the ok to go home tomorrow as long as she feels ok. Sarah just left to meet with our psychologist, Stephanie. She is very good with children and Sarah looks forward to seeing her. Sarah also met yesturday with "group". It is an informal meeting, playtime with the 3 psychologists and the kids to talk and get together. She seemed to enjoy herself. Tonight we meet with our primary Dr. about Sarah's treatments and the changes. There will be talk about the stem cells and the transplant. I am nervous sitting here waiting to meet with him. I don't want to hear the 'scarey " news. I will keep you all updated:)
Thank you, Jackie

Wednesday, February 5, 2003 1:37 PM CST

Hello,
Last night was a blast! Don, Catie and grandma Rego came up to have supper. Sarah and Catie went to the play room to make yarn octopuses. The UW hockey team came to help. The girls were having so much fun with the players. I could hear them laugh down the hall.:) Sarah is on a medication for nausea. It makes her a little silly and very outgoing. We ended the night watching Stewart Little 2 video.
Today we went shopping at the VA hospital which is connected to our hospital. They have a nice gift store. Some moms and their kids went down with us to take a walk and look for goodies. Now Sarah is in school. I continue to pray that all keeps going well. She doesn't have too much of an appetite today. It is fun to look at the guest book and see where everyone lives. A lot of writers from the East, Alaska, the south, it is so neat to see all these people's names from across the states. Thank you to all for writing.
Sincerely, Jackie

Tueday, February 4, 2003 2:43 PM CST

We made it one day!! Chemo was started last night, her vp-16 lasted two hours and her cisplatin lasted one hour. She did great. She never felt sick, and still kept up her appetite. :) But they had to hydrate her a lot. So once every hour she had to piddle. We didn't get too much sleep but she woke up and wanted to get dressed to go to school. It looks like we will be here until Friday. There is word that we didn't get enough stem cells collected so we may have to go to the OR to have her bone marrow collected. We will find out tomorrow for sure. I am sad that it maybe another procedure. But we have to have enough for transplant.
Don is coming tonight for a visit and supper. He is coming Thursday to spend the night with Sarah. She wants a slumber party with the whole family. We will have to see...
Thank you again for the prayers:) I hope we have smooth sailing this week.
Sincerely, Jackie

Monday, February 3, 2003 2:55 PM CST

Hi everyone, We are here!!! We arrived at UW around 1pm. The floor is crowded so we are in the suite:) It is a little bigger and pretty private. Sarah was anxious to get to school. So right after her weight, vitals, etc. she ran off to the classroom. We are right across the hall from the school. She has a very nice teacher, named Jackie, so you know with a name like that she is nice:) Don took the opportunity to take a nap in her bed while she is gone. At 2:30 the art/rec room is open. So Sarah is making mobils with the Child Life students.
She will start her treatment around 3pm. The two chemos: vp-16 and cisplatin, run about 3 hours a day for 4 days. She has to be very hydrated because cisplatin is hard on kidneys. So we will probably come home on Friday.
I am in the rec room typing and watching Sarah. It is so fun to watch her mingle with the students and smile. She has the most beautiful smile:) Yesturday I dropped off 4 canisters of film so pretty soon we will have some pictures to look at on our website.
I thank everyone for the kind words and prayers. It makes me feel at ease knowing you all are there for her, for us. I am grateful.
Sincerely, Jackie

Sunday, February 2, 2003 1:10 PM CST

Hello everyone!
Tomorrow Sarah and I are off to the hospital for round 4 of chemo. Sarah's spirits seem to be good. She knows tomorrow we go back but that after we finish round 4, she only has 2 more chemos to go! What she does not know is that there is surgery and a transplant ahead. She thinks her tumor will be gone and she won't need surgery. It is very unlikely that will happen. That would be a miracle!!
The week at home went fast, too fast. I wish the week at the hospital would go that fast:) We should be home Thursday or Friday of this week. Then we wait for her counts to fall and pray that she does not get a fever. If we get a fever we go to the hospital and stay until her counts come back to a safe number to fight infection. I never really knew what chemo can do to a body both physically and mentally. I think a person truly does not understand until they go through this. My heart does go out to all who have had family members with cancer and of course the people who have had cancer.
Please pray that Sarah has a good week with chemo. It is a new drug this time and we don't know what,if any,effects will come about. It is scarey and I am on pins and needles as she gets hooked up to the medicine.
Thank you to everyone for their support, prayers and concern. It is very much appreciated.
Love, Jackie, Don, Sarah and Catie

Friday, January 31, 2003 at 11:04 AM (CST)

What a wonderful week we had!! Sarah went to school Tuesday and Wednesday. She would come home and tell us everything that happened. Just like old times. She stayed inside during recess to do homework because she wanted to make sure she was caught up. She loves school and loves doing homework. I hope that stays with her through the years:) Thursday she took the day off to be home and play with Catie. They had a nice day together just playing and enjoying each other. It was very nice to watch. Of course there were a couple of arguements, but it was nice to hear them(this time). Thursday night Kelly and Kim (their cousins) came to visit and have supper with us. It was a nice time and the girls loved it. Today, Sarah had to get some blood work done at our local hospital. We will find out this afternoon what her numbers are and if she is ready for chemo. It is my hunch that she is ready, the Dr.s don't really want to wait much on this type of cancer. It is pretty aggressive. Sarah is at school. It is snowing today so she thought she would go outside for recess.:) She is already sad that her week is ending and that Monday is near. She had a terrific time, feeling good. She knows what happens after chemo and she feels pretty bad.
Thank you all for the prayers and guestbook entries. I am addicted to reading them. Don makes fun of me because I am constantly checking for new entries.:) They are so much appreciated and it feels so good reading them and knowing that people are thinking of Sarah, and us. Sometimes, especially at the hospital, it feels like we are in a whole different world and we are missing what is going on with our old life. I guess I am a little sad that our week is ending too. Please keep Sarah in your prayers and thoughts. She will be coming up with some big procedures in the next few months. Thank you to all! You all mean a lot to us.
Sincerely, Jackie, Don, Sarah and Catie

Tuesday, January 28, 2003 at 12:59 PM (CST)

Yesturday Sarah and I went to the hospital to have her GFR test done. It took all morning but we were able to be back home by 1pm. We got a call from the hospital last night to say she "passed" the GFR test and her kidneys are working fine. She will be able to handle the cisplatin chemo. But that her platlet count was low and she should take the rest of the week off!!! We were so excitied!! We have all week to go back to our old routine and old way of life. It is wonderful. As I type, Sarah is at school with her classmates. I did check up on her at lunch and she is smiling and happy. The ole Sarah. It melts my heart to see her smile again.:) Even Catie says to me today: mom, we are back to normal again. We are to go back on Monday the 3rd for her chemo treatment. We do not know if we have enough stem cells harvested from Friday or not. But we are going to wait until we go to the hospital to find out. We are taking this "free" week and not talking to Dr.'s. Thank you for the continued support. It is so wonderful to know Sarah is not forgotten.
Love, Jackie, Don, Sarah and Catie

Friday, January 24, 2003 at 11:39 AM (CST)

Hi everyone,
We did not collect enough stem cells yesturday. Sarah is having her stem cells collected today too. Hopefully we will have our 5 million today. We are off the California study. Her stem cells will stay in Madison.
The plan today is for her to finish the collection, have a platelet transfusion (very common) and have her femur line removed. Then she will come home for the weekend and be back on Monday for a kidney test called:GFR. Then her chemo will start on Tuesday and run through Friday or Saturday. But, we will all be together for the weekend! She is very excitied about that and anxious to get home. She had a special surprise visiter last night at the hospital, her kindergarten teacher. We are so very thankful that we have sent Sarah to St. Joseph's school. We have been truly touched and will be forever grateful to ALL the students, staff, and families. Our school is very much a family.
We have really enjoyed reading the guestbook entries. It is so wonderful to know people are still thinking of Sarah. Thank you to all! Have a nice weekend and we will let you know how Monday goes.
Love, Jackie, Don, Sarah and Catie

Thursday, January 23, 2003 at 08:20 AM (CST)

Hi everyone,
Yesturday Sarah had quite a day. We arrived at the hospital for blood work and then went up to the children's ICU. There she had a bone marrow biopsy done and a femur line placed (in her groin) for the collection of stem cells. She was rather upset that she had to have this femur line placed. The bone marrow will be sent to California to be tested. When Sarah was first diagnosed she had "clean" bone marrow, no cancer. So our doctor is confident that it will still be that way. Because she has had 3 rounds of chemo it is unlikely that it will appear. So we are not too worried about that test result. The stem cell process was interesting. A large machine was hooked up to her femur line and blood was pulled out, went through the machine and then placed back in her. A bag of yellow plasma and a bag of red stem cells were hanging. Sarah thought it looked like ketchup and mustard. The process took about 4 hours. The doctors took a sample and detemined we didn't have enough. We had about 2 million and we need at least 5 million. So today Sarah will be hooked up again and we pray that she will reach a total of 5 million. If not, we could try again on Friday. Our stem cell Dr. likes to have a minimum of 5 million for transplant, a little more would be better. When Sarah was first diagnosed, she was placed on a study. The computer picked her to have her stem cells purged in California and then sent back to us for transplant. But California wants 10 million cells. We really don't think we will get 10 million. Sarah might be taken off that study and her cells will have to stay in Madison. Again, we don't feel too upset because Sarah does not have cancer in her marrow. If she did, I would be terribly upset that her cells didn't get the "cleaning" in California. Don and I feel that God is with her and she will prevail. That no matter what road of treatment we have to take, it is meant to be. We also feel that she has a special guardian angle looking out for her-- my dad. Sarah will get through these times with the help of all our friends, family and community with prayers and concern.
Thank you to everyone for your help, calls, prayers, emails and thoughts. We appreciate you all very much.
love, Jackie, Don, Sarah and Catie

Tuesday, January 21, 2003 at 07:50 PM (CST)

TODAY WE WERE AT THE UW HOSPITAL WAITING FOR BLOOD RESULTS TO COME BACK. THE COUNTS WERE NOT HIGH ENOUGH TO START THE STEM CELL HARVEST. SO, TOMORROW WE ARE GOING BACK TO DO THE HARVEST, BONE MARROW BIOPSY AND A PLATLET TRANSFUSION. WE WILL SPEND THE NIGHT TOMORROW AND THEN ON FRIDAY SARAH WILL PROBABLY HAVE A TEST CALLED: GFR. IT IS A TEST THAT WILL DETERMINE HER KIDNEY OUTPUT. THEN WE WILL KNOW IF SHE CAN TOLERATE THE NEXT ROUND OF CHEMO. IT IS A CHEMOTHERAPY CALLED; CISPLATIN. IT IS HARSH ON KIDNEYS. THIS WILL BE SARAH'S 4th ROUND.

WE APPRECIATE ALL THE GUESTBOOK ENTRIES. THEY ARE ENCOURAGING TO READ AND MAKE US SMILE:) THANK YOU EVERYONE FOR THE PRAYERS. WE ARE SO THANKFUL FOR THE THOUGHTS AND PRAYERS. PLEASE CONTINUE! THANK YOU AGAIN FOR READING OUR JOURNAL AND AGAIN FOR YOUR CONCERNS.

SINCERELY,
JACKIE, DON, SARAH AND CATIE

Saturday, January 18, 2003 at 07:47 PM (CST)

We have certainly enjoyed reading all of the entries that people have left in Sarah's guestbook. It is very encouraging to see all of people who care so much.

Sarah was able to come home yesterday evening 1-17. Her spirts have returned. It most certainly makes a difference in her spirts to be home.

Monday, Sarah has to return to UW-Madison for some blood work. It should hopefully be a short day. The results from the blood work will tell us if her stem cell collection is on Tuesday 1-21 or if it will have to be delayed.

Keep the faith and we will be updating Sarah's web page often.

Don, Jackie, Sarah and Catie

Friday, January 17, 2003 at 11:38 AM (CST)

Hello Everybody,

We have recently been told about this web site for creating a web page for Sarah.

We felt that this would be a great way of trying to keep more up to date information about Sarah available for those who wish to monitor Sarah's progress.

Sarah came into the hospital on Wednesday January 8th. Sarah was at home and "spiked a fever". Because of her immune system being compromised from the Chemo-therapy, she has to go to the hopital when a fever spikes.

Sarah was place on an anti-biotic, as a precaution against infection. All of her blood cultures have come back negative for infection and she has not had a fever for the last 6 days.

Sarah has been waiting for her ANC (absolute neutrophyl Count) to come back so that she can come home. As of this morning her ANC IS 468.....yeah!!

We are now waiting to talk with a doctor to see if we can go home. Sarah is scheduled to come back on Monday 1-20 for a blood draw, 1-21 for her stem cell collection and 1-22 for a kidney test and the start of her 4th round of Chemo.

We will try to keep this information as updated as possible. Thank you to all of our friends, families and communities for the continued support, it is greatly appreciated.

Don, Jackie, Sarah & Catie

Wednesday, January 15, 2003 at 01:40 PM (CST)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

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