History

Monday, October 20, 2008 10:55 AM CDT

Yesterday Dance Marathon had an event an awesome day at Bloomsbury Farm. Thank you to the several dancers that made the kids day. The wind was a little chilly but did get better as the day progressed. It is always nice to see so many families and familiar faces. Each story a little different as well as the many challenges but the best part is knowing the support is there if you need it. We appreciate the many efforts put forth by this wonderful group of college students. Taking the time out of your schedule to help the kiddos forget about cancer and focus on fun. Thank you Dance Marathon, just think the big event #15 is just around the corner.
We will get ready for Halloween which is the next big day on our agenda it happens to be my birthday and during the day we will attend the "Transplant Reunion", Olivia's dad David will be speaking that day. He can shine and explain his role in Olivia's bone marrow transplant. We have a unique story when it comes to those two, father/daughter together forever. A miracle match, Livee continues to move forward without incident. Having David as a perfect match has made the road much smoother for Olivia that I am sure of.
Thanks for checking in as always we appreciate the support.

Tuesday, September 23, 2008 3:13 PM CDT

Olivia is now 9, well as of September the 12th. I am just lame and have not updated.
Livee had a trip to build-a-bear and then a sleepover party. Wow, they had alot of giggling, laughing, and gabbing going on. It was a day of celebration, every day we can be thankful for our Livee.
This past Sunday we attended the Dance Marathon picnic at Kent Park. The day was a perfect weather day, the kids had fun fun. We made tie-dye T-shirts had crafts and a magician on board. Thank you DM for another successful event. Next we go to Bloomsbury farm in October. Also there will be a DM float this Friday night in the Homecoming celebration for the Iowa Hawkeyes.
It just does not seem possible that we are now entering Fall, wow the time just gets away somehow. We received a complete print out of Olivia's hospital bill from 2/28/04 to 9/18/08 wow where we were and where we are, a miracle. Everytime I look at Livee I am so thankful for everyday.
Not to many minutes go by that I don't think of at least one of the many children that we know or because of cancer.
Cancer is unforgiving and does not care who or when it will strike again. September is coming to an end but Childhood Cancer Awareness must continue so that someday there is cure.
Thank you for checking in, I will try not to be so lame in posting and someday might even update the pictures.

Wednesday, September 3, 2008 8:24 AM CDT

Olivia has started the 4th grade and enjoying her days. We had a bit of an adjustment but are getting back into the swing of it.
We are looking forward to Saturday seeing the Hawkeyes, compliments of Make-A-Wish. A yearly event, sounds like the weather will be perfect. Hope to see some familiar faces too.
I can't believe that Olivia will be turning 9 real soon. September 12 is the big day, she shares this day with my Mom. Pretty special to have Grandma share your birthday. Livee is deciding what she wants to do, sleepover or some other activity. She wants several kids to sleepover, we will accomodate no problem. I would prefer to simplify but we will wait and see.
Today Olivia meets a new regular pediatric doc, we have not had just an everyday doc since diagnosis. Dr. Tracy Shaw will take care of Livee now. I thought before winter we would set up an appointment so Tracy can get to know Olivia a little bit. She is in tune with Olivia's history and treatment and all the rest to this point. One more step out of the cancer zone. Ya hoo!!!!
I apologize for not updating pictures and such. I don't even have an excuse but maybe will get that done sometime.
Thanks for checking in.

Monday, August 18, 2008 7:54 AM CDT

August 18, 2005 just 3 years ago today Olivia recieved a special gift from her Dad, a 2nd chance at life without cancer. How awesome for them, they will always share this rare and unique gift. A parent match is so uncommon, possibly as high as 1 in a million chance. Obviously, what Olivia's body needed to fix her. Each day I am so thankful for my little girl.

Also today Livee is officially a fourth grader. She was very excited and took more time than normal to get ready for her day. I love seeing the transformation from not caring or giving any thought to her appearance to now seeming to want to take the time. We met her teachers last week, they are all really nice and seem ready to teach.

I need to run I am at work. Tomorrow we will be speaking on KHAK 98.1 around 5 pm, they asked to help out. It's been a while since I have done an interview, it should be interesting. I will just wing it like I always do. Listen in. Thanks for checking in on Livee.

Tuesday, August 12, 2008 9:37 PM CDT

Hey, is anybody out there? Just kidding.

We are winding down the summer and Livee is getting ready for the 4th grade. She is pretty excited, she knows who her teachers will be and is ready to see some friends that she has not seen over the summer. I say teachers because she will have two that will share the duties. I think it will be great.
This Thursday is registration and then Monday will be their first day of school August 18th. That date we also celebrate because it will be 3 years since Olivia had her transplant. David and Livee always plan something just for them. They share something very special between them, a very unique bond for life. Our Miracle Match!!
Seems like every weekend in September is already busy. Olivia is also taking piano lessons on Tuesday evenings, she really enjoys it, she takes that after my Mom. Those two have always been very close and share the same birth date, September 12th.
Need to run, thanks for checking in.

Thursday, August 7, 2008 4:07 PM CDT

CELEBRATE!!!!!! CELEBRATE !!!!!!! CELEBRATE!!!!!

We have reason to celebrate this day!!!! Three years since Olivia's new marrow from Dad and today we just found out that unless there is reason to suspect something going array Livee has had her last spinal/marrow aspiration. Wow, this is the best day ever! My baby won't have to endure the pain, the fear, the lingering pain in her back after being poked. Olivia has had around 40 of these procedures since her diagnosis February 28, 2004. She is the best, we are so proud of her. Also, a huge sigh of relief today, all of her results were normal no cancer, all numbers within the normal range. Dr. Radhi said that Olivia's labs especially her marrow looked the best he has seen it look ever. He reassured me that we are ok to just have lab work every 6 months and that is it. Olivia is completely reimmunized and now ready to start the 4th grade.
Praise God and thank Him for everyday.
All of you that still support us we wish to say thank you, we know you are out there. I know you check in on Livee's page even if you don't post. I apologize too for not posting more often, but no news is good news. The motto we cancer parents live by.

Sunday, March 23, 2008 8:01 PM CDT

Our not so Spring like Spring break is coming to an end. Olivia had an eventful week spending time at the Recreation Center with swimming, roller skating, and many other activities. Grandma was here and took Livee to her dental appointment and then we all went for her lab work on Thursday at UIHC. The dental report was good although I know the chemo and radiation have done their damage. No lasting effects from her pox shot either, that is a very good sign.
Olivia has come so far on this journey, everyday something reminds me of time spent in the hospital or something is said that makes me think back. Our lives will never be the same, it may something like filling out paperwork for school or her camp registration form, the words we must write "Diagnosis date? Diagnosis? in remission how long? everything a reminder. Yes, Olivia has overcome so many obstacles and is doing so well but the fear will never subside. I will overcome the fear and not let it win just take one day at a time. Be thankful for my blessings. On that note we had a wonderful Easter Day, we spent time with Grandma and Grandpa along with my brother and his family in Fairfield. This morning we went to church services and then the kids enjoyed an Easter egg hunt, the teenagers scattered 2,500 eggs so the little ones definitely had plenty. It was nippy but the kids didn't seem to notice.

Thursday, March 20, 2008 4:14 PM CDT

Olivia's appointment today went just fine. Her lab results were all within the normal range, including her liver functions, and most importantly her immune system. So far no reaction from her chicken pox vaccine, that's a good sign. We certainly don't want any cellulitis like the last time. Steve, the PA said there is another child that has a reaction when given shots, if Olivia would continue to have reactions from a shot in her situation that could mean something else is going on with her system but I don't think that will be the case. I think the reaction she had in October was an isolated incident. Life is good, we don't go back until June for a shot and then August she will have a spinal and marrow aspirate. We can breath now for a while. Each appointment is emotionally draining it takes a moment to come back to reality. But the best news our reality is looking good with blue skies and sunshine.
Thanks again for checking in.

Wednesday, March 19, 2008 8:11 PM CDT

An update pre UIHC visit tomorrow. Olivia will have labs drawn, and an overall check by Dr. Radhi then the chicken pox vaccine her very last vaccination. This is yet another milestone in her journey. I know we are very blessed to be where we are. Olivia has done remarkably well post transplant, a few bumps here and there but no major issues. It is truly amazing to think that a child can have cancer then a bone marrow transplant and not be on any medications at all. It has been years now since Olivia has had to take anything. I was looking her over last night before her bath and the only visible signs are 3 small scars, two on her chest from the two different central line sites and then one on her leg from a skin biopsy they did to make sure she did not have leukemic lesions. Each day a miracle, each day a blessing.
Thanks for keeping Livee in your thoughts.

Monday, March 10, 2008 2:15 PM CDT

Just to pass on Olivia is doing great. We are all ready for Spring more time outside and sunshine. Next week Olivia will have her break from school. She will be attending a program throuh the Rec Department for 3 of the days and then a couple of days with Grandma. Livee will also have a dental appointment and labs at UIHC. She should be getting her chicken pox vaccine also, that will complete all of her re-immunization shots. Yipee Yahoo, let's hope she does not have any reaction to the shot. I am sure she will be fine. Sometimes the past four years don't really seem real, I know I am a different person. I don't look at anything the same as pre diagnosis.
Thanks for caring and checking on Livee.

Thursday, February 28, 2008 7:54 AM CST

~~~~~~~~~~~~~~~~~~~ Livee's Journey ~~~~~~~~~~~~~~~~~~~

On this day 4 years ago the life of a 4 1/2 year old changed forever. Olivia was diagnosed with AML Leukemia M5, this was devestating news to hear about your child. We were planning kindergarten roundup and getting ready to start school for the first time, however there was a different plan handed down to us. He had another path for us to follow, how do we do this? What do we do? There were so many unanswered questions and concerns. The complexity of cancer especially with a child, what does all of this mean? Somehow we found the strength and know how to make it through day by day hour by hour. Faith is the reason, faith was our strength and our hope. Hope survives and because of family, friends, and countless others that touched our lives Olivia has done so well. Each day a gift.
Now also marks 2 1/2 years since Livee's bone marrow transplant. God is good. He gave us a Miracle in Olivia's Dad. Where would we be without this special gift that He bestowed upon us.
Thank you for looking in on us. Bless all of you.

Thursday, February 7, 2008 12:14 AM CST

Did anyone see the Cedar Rapids Gazette yesterday? There is a picture of Olivia in the community section.
We are still talking about Dance Marathon and what wonderful people are involved with this event. The money all stays at the Childrens Hospital, for families now and for future families. Unfortunetly, the reality is everyday a new family will hear the news that their child has cancer. As they travel down this path the Dance Marathon family will help with emotional and financial support. I believe a crucial part of staying upbeat and postive. Too many children must face this beast. Please pray for these kids and their families.

Monday, February 4, 2008 10:04 AM CST

Add on note: If you want to go to www.desmoinesregister.com/video
Lindsay Arnold the exec director speaks about DM and then I am on there also.
I am still pumped up about the whole event. Again thank you dancers.

Monday, February 4, 2008 7:55 AM CST

Dance Marathon, totally rocks!!! This amazing group of college students reached there goal and even surpassed the 1 million dollar mark. That is incredible, the energy of power hour pumped up the entire dance floor the place was jammin!!! Wow, I wish you could all experience such an uplifting positive heartwarming event.
We want to thank our morale group #12, for all of their support and kindness. Erik Nylen our morale captain was awesome. Each group and individual works so hard for the kids. The on going chant FTK, FTK For The Kids was heard through out the event. The whole reason for Dance Marathon is the kids. All of the money stays right here at UIHC to support the children and families going throught cancer treatments and even after. I am proud to be a part of such a wonderful organization. U of I can be very proud of their DM students.
More later, I am working and need to run.

Thursday, January 24, 2008 7:59 AM CST

Did anyone notice? I finally had time to update pictures. Exciting right? We have been very busy with life as we know it. That is truly a wonderful thing. Trying to stay warm and comfortable through this cold cold spell.
Livee has been very healthy not any signs of anything, thank goodness. She loves to be outside of course right now just a bit nippy for that but when it warms a bit she and the neighbor boy will be out running around in the neighborhood. Just like we used to do as kids.
We are really looking forward to the Dance Marathon #14 next weekend. The dancers and morale groups work so hard to make all of this happen and it's all for the kids. We are proud to be associated with such a wonderful group of college students and all that they do. Rock on Dancers!!!!

See everyone there!!!

Friday, January 18, 2008 2:26 PM CST

I am ready for the 3 day weekend, how about you? It will be nice to spend time with Livee. Seems like we are always rushing here or there or just the usual evening routine does not leave a lot of time to just relax.
Livee started taking Tae Kwon Do just last week and seems to really enjoy it. It's neat because you work at your own pace moving toward the next level. She met a new friend that is her age and does not live far from us.
It has been so nice to not have any doctor appointments or really even think about the hospital. We don't go back until Spring break time in March. Yipee!! Yahoo!! Olivia is 2 1/2 years post transplant now. Each day a blessing and a gift.
Honestly not a minute goes by that I don't think about cancer in one way or another. Always a prayer for those in treatment or those that have lost a loved one and those that are in remission.
Thank you for checking in our boring web page. Boring is the best way to have it. Like we cancer parents say!!

Wednesday, January 9, 2008 1:17 PM CST

We are nearing Dance Marathon 2008!! The big dance is February 1st & 2nd. They do such an awesome job and provide so much for the kids. There is nothing like it, the excitement and positive energy flowing. This will be our 4th year attending. The best part is seeing all of the families. We are in a unique class a choosen club that we did not sign up for. Each family unique and special in their own way, a story to tell or just being there can tell an unspoken story. Thank you Dance Marathon!!!!

Livee is doing so well moving along swimmingly. I am always guarded and fearful of what might be but refuse to give in to those thoughts and focus on the positive. We just love our Livee, thanks for checking in.

Thursday, January 3, 2008 2:13 PM CST

Wow, Happy 2008!!!!!
Where did the time go? I just got back to work today after the long Holidays.
Livee is doing great ready to go back to school today. I know she missed her friends. We had a wonderful Chirstmas with family and friends. Every one made it home safe and sound after all of the inclement weather and such. Santa was real nice to Olivia this year.
I apologize for no update of pictures etc but I do not have a computer at home for now. Not really a priority at this point.
Thanks for checking in on Miss Livee.

Wednesday, December 19, 2007 3:36 PM CST

Confirmation, Olivia does not have chicken pox. So she did go to school today, although she would have rather stayed home. I think she will have plenty of time off, after today she won't return to school until January 3rd.

Livee is excited for Christmas and all of the fun.

Happy Holidays, and Merry Christmas to all of you!!!

Thank you for checking in on Livee, she is the reason for the page. As always, no news is good news and boring is just fine with us.

Tuesday, December 18, 2007 3:09 PM CST

Last week (Thursday) I received an email from the school that there was a case of chicken pox, a little boy in Liv's grade. I talked to Steve our PA he said just keep an eye out and watch her. So as luck would have it yesterday (Monday) I get a call from the school Livee has red spots on her face? Livee has not had the chicken pox vaccine and won't until March '08. She did not have any fever and her skin is clear on the rest of her body. Long story short, wait and see. Today she did not go to school just as precaution, Grandma and Grandpa are hanging out with her. If nothing develops she will return to school tomorrow, the last day before her Christmas break. I hope she does have them just to get them over with then she could skip the vaccination in March. Olivia is completely reimmunized with the exception of the MMR and the Pox vaccines. That is a very good thing to have behind her. Olivia is now 28 months post-transplant. We are so fotunate and blessed.

As we approach Christmas keep those in mind that are fighting right now this cancer monster. We need to pray for these families and also those that have already lost a loved one. Cancer does not care if it's a Holiday or a Birthday or anyday, it is relentless.

Thursday, December 6, 2007 1:11 PM CST

A quick note to say Hello!!
Olivia is doing great, knock on wood but no coughs, cold or anything of that nature. Thank goodness. Everyday after school she wants to run over to her friend Max's house and play outside with him. I love it, I think being outside is the best medicine for any kid. We are all healthy and ready for a little break from work and school. We don't have any set plans for over the Holidays but will be traveling some.
Hate to cut this short but I am working and must go.
I do plan to revamp Livee's page at some point.
Thanks for looking in.

Thursday, November 29, 2007 3:01 PM CST

Ready for Santa?

Now that Thanksgiving is behind us we can focus on Christmas. I am mentally not quite there yet, maybe when I see some snow it will change.
Livee has numerous items that she has mentioned for her wish list. We will be talking with Santa to see what he thinks she should have.
Last night we were looking at all of the pictures she had taken with Santa and she said, "Mom, I am getting too old for this", she might be in the know? I told her that Santa would miss her if she didn't come out to see him. I need this years picture to add to my display. You're only young once, and these pictures are priceless.

Remember the Holidays are not always joyous for everyone, it can be a difficult time. Especially one family I am thinking about the Ruley's. Their son Doug passed a year ago on December 3rd. Pray for their family for strength and courage to help get them through.

Thank you for thinking of Olivia. Please sign in and say Hello.

Monday, November 26, 2007 7:41 AM CST

Just a quick update finally. Olivia's lab work and echo were picture perfect. All of her counts are in order and her heart is strong and healthy. So much to be thankful for. I hope you all enjoyed a safe and happy weekend. It will take a little adjusting time this morning back to reality.
We had a nice uneventful Thanksgiving with family.
Thank you for looking in and your continued support.

Tuesday, November 20, 2007 4:08 PM CST

~~~~~~~~Happy Thanksgiving Everyone~~~~~~~~~

Everyday be thankful for something big or small. Hug your children tell them how special they really are. You never know when your world can change in an instant. When I reflect back on the last couple of years it's unimaginable, but yet here we are with our healthy 8 year old Olivia. We are so thankful for each day. As the Holidays approach pray for those families that are just newly diagnosed or that have a loved one that is no longer here. Cancer is ruthless, relentless, and plain just does not care.

Olivia will have labs tomorrow and an echocardiogram, if you could squeeze in a little prayer we would be grateful.
Thanks for looking in, God Bless.

Wednesday, November 14, 2007 12:25 AM CST

We successfully talked to about 90 Dance Marathon people last night. There were 3 groups a pretty full house. Hopefully we conveyed the message as to why they raise the money and how important it is to the families. Each dollar raised helps a family to get through the cancer hell. Don't ever minimize the fact that one person can make a difference in some way or another.
Thanks for looking in on us, I am working so I need to close.

Monday, November 12, 2007 7:54 AM CST

We had a fabulous weekend helping Grandpa celebrate his birthday. Livee had fun with all of her cousins and the rest of the family.
Last week a Dance Marathon rep contacted us to give a tour/talk about what Dance Marathon does for families and how they provide support etc for the families. We will be going over there on Tuesday night. Tomorrow Livee does not have school so we have errands including a couple of appoinments for me and this and that.
I need to run work is starting. Thanks for checking in.

Friday, November 9, 2007 2:24 PM CST

Olivia had nothing but a positive report from her teacher conference yesterday. We could not be more proud of her especially considering the fact she missed kindergarten and first grade. We are very fortunate that even with the intense chemo and radiation she does not seem to have any lasting effects. We have been so blessed this way, we are thankful each day.
We are on our way to celebrate Grandpa's 80th birthday surprise party tomorrow. He is so awesome a wonderful Dad and Grandpa. Happy Birthday to my Dad!!!

Thanks for checking in Livee is doing just fine.

Friday, October 26, 2007 12:17 AM CDT

Here it is Friday already, Livee has been doing just fine. A little different than a week ago when her fever spiked. Now we get ready for the weekend and then Halloween. I am looking forward to doing whatever comes along maybe go over to the Hawkeye game for a while. Livee has a play date so we will have to see what transpires.
Thanks for looking in on us and have a great weekend.

Tuesday, October 23, 2007 2:35 PM CDT

We finally made it home last evening around 6:30 pm. Livee is doing great of course now we have the adjustment of back to the real world. No more getting everything under the sun at your beck and call. She honestly did not want to leave, imagine that after being the queen and spoiled spoiled over the weekend.
Livee will be on an oral antibiotic until Sunday 2 pills 3x a day. Today she is back at school with no limitations, however I did write a note for gym because the doctors did say trauma to the area on her arm would probably not be good. I think they want us back at UIHC on Thursday for a follow up. I really don't think it is necessary unless I would see some dramatic change. Today the kids had their school pictures taken. I wanted Livee to wear a certain top but she thought otherwise, no biggie I let her wear the one she thought best. Generally 8 year olds know everything, right? Pick your battles as they say.
Thanks for looking in on Livs. I have regrouped now and come down from this scare of a lifetime. I know it will be like this forever, the fear is just part of our lives now. I just have to realize that from time to time Livee will get the usual kid things but in her circumstance we must take extra pre-cautions and it is always better to be on the safe side.

Monday, October 22, 2007 2:27 PM CDT

As of right now were are still at UIHC but we just received Livee's discharge papers. She has been fever free since Saturday morning and the area of concern on her arm looks 10x's better. We are in the toyroom playing Clue as Livee receives her last round of antibiotics at the same time. Once that is done we are free to go. Now this so ironic but yesterday our friend Cameron's Mom (Marci)called me to say they were being admitted because Cameron had a fever. Those two will do anything to be together. They are just two rooms away. I guess if you have to in here it's pretty cool to be here with friends. Cameron and Livee are so much alike this will be just one more chapter of their future book deal.
Thanks for all of the prayers for Livee. Please say some for Cameron as well. These kids are so amazing, stronger than any super hero ever. Everything in stride for them, the conversations are sad but comical as well for example "My IV was over here but that didn't work so they had to put it over here, this finger poke hurt really bad but then the next one didn't", they help each other through the bad and the good.
Tonight we have a busy night getting settled back at home with a shower and reading her school has an auction type thing but they may not happen. Tomorrow Livee has school pictures and situated back into the mode.
I will close for now and update soon. I know Livee has a follow up appoinment on Thurs.
I left this morning before 6 am so I could get out of the ramp without paying an arm and a leg. (shhhhhhh) Then I had an appointment that was not too much fun but I made it through. (Girl Stuff) Talk to you all soon.

Saturday, October 20, 2007 9:03 AM CDT

Good morning to all,
Olivia and I are in the toy room waiting for her breakfast to arrive. The synopsis is we will be here at least through tomorrow Sunday and possibly Monday. Her arm is looking better but still red and puffy due to the vaccine. Nothing back on the culture yet but her counts are within the normal range. This is not at all cancer related, that is definitely the best news we could hear. Just a reaction to the shot, Dr DiPaulo was just in and said this is nothing but since Livee is in a different catagory they of course want to take extra pre-caution.
It is so strange to be here but I know this where we should be. I need to get going for now but will update soon.
Thanks for checking in.

Friday, October 19, 2007 7:37 PM CDT

Our day changed rather quickly, on my way home to leave for the Celebration of Life I noticed a call on my cell phone. It was David telling me that he had to pick up Olivia from school. She had a fever of 104, and the sight where she had her pnumava (shot) was red and puffy. He called over to UIHC they said to bring her in. I met Livee and Dave over here, she already had tylenol in the works and they were putting in an IV to start some anitibiotics. The good news is her fever subsided right away. She had a nap and is doing so much better with the exception of her arm being rather sore. They drew labs and cultured her blood to be sure that is all that is going on. We have not heard anything back so I am assuming that is good news. I was so scared on the way over here. The memories came flooding back the countless trips we had made across town under these same circumstances, that fear will never go away. It's been 2 years since we have been in the hospital, like we say to the staff it's great to see you but not here. I can't beleive all of the familiar faces, that's good for Livee. She is so comfortable here that none of this even fazes her. She of course loves the flat screen TV and playstation in our room. We are in room #3334 on 3JCE. I don't remember our phone number. We hopefully will be getting released tomorrow probably with an oral antibiotic of some kind. So please say a little prayer for Livee in hopes that the fever is just from the shot and that we get out of here tomorrow.
Thanks for checking in, I will update soon.

Friday, October 19, 2007 11:45 AM CDT

Today we will attend the "Celebration of Life" Iowa Marrow/Donor reunion. David will be one of the speakers, I am so glad that he will get to shine and tell his story. Livee and I will of course be attending as well. It will be nice to meet other families that have experienced transplant and see hear perspective their stories. We are so fortunate to be part of this club. Miracles can happen!!

Please remember others as they still battle this monster and especially those that have lost a loved one. Hope survives and someday I believe a Cure will happen.
Thanks for checking in on Livee, she did have a slight temp from her flu shot but nothing to worry about.

Wednesday, October 17, 2007 11:36 AM CDT

I apologize for not posting earlier. Thanks for stopping by. This afternoon Livee and I are going to UIHC so she can receive a flu shot, they will also be giving her another shot. I believe she will have lab work done so they can see where her numbers are pre-shot and then compare post-shot in November.
I have to cut this short I am working and need go right now.
Livee is doing great.

Thursday, September 27, 2007 1:48 PM CDT

Nothing to report, what a great feeling. Livee is doing great just being your typical 8 year old. Last night after school she was having so much fun riding her bike with the neighbor Max and another little gal from across the street, Macy. I just enjoyed watching them laugh and play, it made my night. The simplest of things can bring such joy. I am just so thankful to see her happy and healthy. Perspective has a whole new meaning, so forgive me if I seem a little weird at times. Sometimes I feel like I should wear a button that says "I am a cancer parent that's why I act so weird". Only a parent of a child that has/had cancer can understand, the perpetual roller coaster ride. Thanks for checking in, we will see some of you in a couple of weeks at Bloomsbury Farm.

Tuesday, September 18, 2007 7:53 AM CDT

Sorry for the delay just a couple of things to mention.

Thank you to all of the Dance Marathon group for a wonderful family picnic. The day was perfect and the kids had such a good time. WAY TO GO DM !!!!!!!

Livee had a wonderful birthday last week, her grandparents came up and she of course was spoiled by both. Grandma made two pumpkin pies just for Livee!!! Grandma's aren't they the best.

Thanks for checking in on Livee!!!
See some of you at Bloomsbury Farm.

Wednesday, September 12, 2007 11:30 AM CDT

~~~~~~~~~~~~~HAPPY 8TH BIRTHDAY MISS LIVEE~~~~~~~~~~~~~~~~~

~~~~~~~HAPPY BIRTHDAY TO YOU, NOW 8 AND DOING GREAT~~~~~~~

Friday, September 7, 2007 12:22 AM CDT

A busy weekend ahead. On Saturday we will be cheering on the Hawkeyes (if they have enough players left after legal troubles) Ha!!! It should be fun they have a pre-game tailgate party for the kids and families. All compliments of Make-A-Wish their annual beginning of the season game.
On Sunday Livee is celebrating her upcoming birthday with some of her girlfriends. They will be making customized flip-flops and bracelets. I hope to have the activities outside. Wednesday will be Olivia's 8th birthday!!!! We will have our own celebration that night.
Thanks for checking in on Livee!!!!

Wednesday, September 5, 2007 11:47 AM CDT

~~~~~~~SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH~~~~~~~

This video message from youtube says it all, please visit.

www.youtube.com/watch?v=AGS4yE5v9rM

Friday, August 31, 2007 2:45 PM CDT

We are looking forward to the long weekend!! Maybe catch up on a few things. My back is doing much better although still no lifting over 20 pounds. Livee is excited because we will be visiting Grandma and Grandpa at some point.
Tuesday I attended the Livestrong Forum in Cedar Rapids with fellow cancer mom Marci!! It's interesting to hear the candidates in person. My hope is that the next President in office will make the effort to move cancer research in a forward motion and allocate funding to support it. Research means cure!!

We were honored this week by a group of local ladies. Each year they have an annual J.U.G.S. (Just Us Girls) golf tournament to support cancer awareness and reasearch. They choose us to be their special family, what that means is they come into our home and do a complete cleaning from top to bottom and then cook us a gourmet meal of our choice. They also gave a donation to Livee and our family to use however we want. Wow, what a wonderful surprise from this generous group. Thank you to everyone who spent time volunteering or helping in anyway with this event. Your generosity and kindness are unmatched.
The support we have had through this journey never ceases to amaze me. Emotionally it renews the spirit and reminds us of what is really important.

Thanks to everyone and have a safe and fun weekend.

Thursday, August 23, 2007 8:00 AM CDT

Hello- Anyone out there?

Good news, good news!!!! The results are back from Livee's last lab draw including her DNA results. It is conclusive that all shows male markers in the marrow and DNA. This is so wonderful, this is what we want. Dads marrow continues to be in charge and Livee's old marrow is gone. Bye bye you're outta here!!!!
Before transplant Dave and Livee made the analysis that his marrow and her marrow were in a boxing match and Dads would take over and beat out hers, the old stuff. I remember her asking me "Mom, after transplant will I be a boy?" when you think about that it is a perfectly logical question since her DNA is male. She would have been 5 1/2 at the time. I told her she would always be my girl.
Livee is loving 3rd grade, she has a wonderful teacher. She is enthusiastic about going in the mornings, yipee that leaves more fun time in the morning instead of me harping for her to get moving. I realize it's the first week but I am optimistic that she will not go back to her old ways. Livee is growing up, huh!
I have been nursing some pinched nerves in my back so I am restricted from lifting for a couple of weeks. That is hard to do you don't realize so many things are 20 pounds or more. I have been minding and have not broken the rules.
Thanks for checking in.

Friday, August 17, 2007 3:31 PM CDT

~~~~~~~~~~~~ LIVEE AND DAD ~~~~~~~~~~~~

Tommorow will be 2 years since Olivia received her special gift from her Dad.
Together forever, they share such a unique bond something that very few can. The chances are so rare for a parent to be a perfect match for their child and yet he was.
Wow, God is good.

Tomorrow will be a true celebration !!!!

~~~~~~~~~ Our hope, her miracle ! ~~~~~~~~~

Monday, August 13, 2007 7:57 AM CDT

Quickly because I am working. Just to let everyone know that test results were all clear. I did not hear back until Friday the final results. Also my computer at home punked out on me. So Praise God all is well!!!! More later and thanks for looking in.

Thursday, August 9, 2007 8:20 PM CDT

Livee is doing fine after her procedure. She was so brave and strong to no surprise. After so many of these she knows what she needs to do to get herself through. The results from her labs (blood work)looked good. We won't know until tomorrow the results from her spinal and marrow. I feel confident that all will be fine. The waiting is difficult but I try not to worry.
After her clinic visit today we went for lunch and then to Build-A-Bear workshop. One of the pediatric surgeons (Dr.Meehan) provides this for the kids. What a nice gesture to his patients and families. It is not every day you find a Doctor with such compassion and so in tune with the patients.
We are getting ready to call it a day. Thanks for checking in, I will post again tomorrow at some point. Tomorrow I am volunteering at an event for the American Cancer Society.

Tuesday, August 7, 2007 12:20 AM CDT

As Thursday approaches I am starting to feel the usual stress and nervousness as I do before each of Olivia's appointments. Olivia will have a spinal/marrow aspirate along with labs. They will follow up to make sure her DNA still indicates male markers. For her that is what we want to see. I am not sure if she will be getting any more immunizations or not. Minor detail I guess, of course my main focus is that she is clear and free from cancer like she has been. We are approaching the 2 year mark from her miracle transplant day August 18, 2005. We are so grateful and thankful to have come this far. Miracles happen we hope they continue to happen. Livee has so much to offer at her young age, she has taught me many lessons. We are so proud of her as she gets ready to start the 3rd grade. Please say a little extra prayer for her. Also keep our friend Cameron in mind with prayer, he is having a scan done tomorrow. The power of prayer in numbers can achieve wonders. Thanks for looking in.

Sunday, July 22, 2007 10:59 AM CDT

Here we are the middle of July already. We have been enjoying the summer mainly just hanging around home. After dealing with cancer and all of the trials and stress just doing nothing is just fine.
Livee is playing one of her PS2 games, yesterday she played in the pool with her friend Maddy. Those two are so much alike, they have their moments though. They are spoiled and have attitudes, that can pose a challenge. I do have a hard time telling Livee no, a residual from days and days in the hospital and having cancer. I am a softy but also realize she can't always have her way etc... I am getting better. As long as I don't think about everything that she has been through and visualize some of the not so fun days. It makes it easier.
We made it past July 7th, that date 2 years ago is when we found out that Livee relapsed. Certain dates will always stick in my head. I thank God each day for Livee and know we were given a miracle and Livee a chance at life.
Please continue prayers for those that have lost a child to cancer, each day can be a challenge without their loved one.

Monday, July 9, 2007 2:45 PM CDT

Hi nothing new to report. I hope everyone had a wonderful 4th of July. We enjoyed fireworks here in Iowa City and spending time in the pool. Livee is now her usual summer brown color, she is such an outdoor girl. We always use sunscreen and try to stay out of the sun during peak hours. I am thankful that she tans instead of burning. Livee is at Hoover Elementary this week enjoying their Summer program. We are planning a pool party later this month party with another family we know from UIHC. The Summer is getting away too quick.
I need to cut this off but we appreciate all of you checking in.

Monday, July 2, 2007 11:26 AM CDT

Thank you Dance Marathon for a wonderful day at Adventureland. The weather was perfect and all of help make for an even more perfect day. You deserve a pat on the back. It's all for the kids, they deserve to be treated like kings and queens and without you it would not be possible. Again thank you!!!
Thanks for checking in more later!!!

Sunday, June 24, 2007 10:52 AM CDT

Livee is doing great she seems to be fine active and full of spunk like normal. Today she is going to a birthday party of a school mate. Last week she was at Hoover for their many activities and this week she will be with her friend Maddy and her Mother. This next Saturday we go to Adventureland with the Dancer Marathon group. We are pretty excited about that.
Work has been full force ahead but is starting to slow down now until Fall. I prefer to be busy busy but the nature of our business does no provide a consistent schedule.
As always thank you for looking in on Olivia. As we say no news is good news just the way we like it.

Monday, June 18, 2007 12:23 AM CDT

Livee has returned from camp safe and sound. She chattered most of the way home until she had a little nap. Two things happened that are concerning but I will try to maintain positive thoughts. Livee had a fever on Thursday and then on the way home she had a nose bleed? She seems to be acting fine and everything checks out ok from the outside. So I am keeping a close and watchful eye on her. The worry and fears come right back, time does not take that away. I have no reason to believe things are not ok.
She started at Hoover today and was worried that she would not know anyone but she did and all is well.
I have to cut this short I am working.
Thanks for checking in and say a prayer for all of these cancer kids. They are the best.

Tuesday, June 12, 2007 7:32 AM CDT

Livee is at camp now for the week she was apprehensive but I know she will do fine. They have such a wonderful facility and so many activites planned the kids don't have time to miss us. I am sure it is much harder on the parents then on the kids. I get to email her each day too.
Thanks for checking in remember no news is good news so if I don't post for a while that is a good thing.

Friday, June 8, 2007 12:05 AM CDT

Are you ready campers? Livee goes to camp on Sunday, we take her to be there by 2pm. She is so excited to see everyone and have a week of fun.
The Summer is off to a good a start Livee has been with her friend Maddy this week and will be off and on throughout the rest of the Summer. Also she will take part in the Summer program at Hoover Elementary for another 4 weeks. Their program is filled with activities and different events for the kids to enjoy.
Hey Mariah, we will return on Saturday after camp so I am sure Livee would love to get together.
Thanks for checking in on us, we appreciate the support.

Thursday, May 24, 2007 12:40 AM CDT

Big news from Livee, she learned to ride her bike without the training wheels on Tuesday night. She was so proud of herself, she said to me later that night "no big deal Mom". She sort of missed the window of opportunity being in and out of the hospital and then she was just plain scared about it. So now we can go on bike rides together. Must go, thanks for checking in on Livee. She is doing just great.

Friday, May 18, 2007 7:48 AM CDT

Hi everyone- awesome news from yesterday. Olivia had an excellent report with all numbers being in check. Her white count is the best it has been in months at 6.8 or so, she had been a bit on the low side for quite sometime. Really as long as a person is condsidered in the normal range that's all that matters. Not to high not to low is perfect. We don't go back now until August which will be 2 years post transplant for Livee. Yipee, Yahoo!!! I still get rather nervous each appointment we have, the memories come back and flow through my head none stop. I am just so thankful to have Livee and know what a miracle she is.
Thank all of you for being there and supporting us through from beginning until now.
Each journey has a path we pray with a cure that someday the path and journey can have a happy ending for everyone. Please say a prayer of comfort for those families that have lost a loved one to cancer.

Tuesday, May 15, 2007 12:27 AM CDT

Mother's Day was nice, nothing special planned just spending time with family and especially Livee. It would have been 2 years ago that Dave planted a garden for Livee and Me on Mothers Day. This year he extended with yet another beautiful flower garden. When I look out my window I can see the new beginnings, a renewal for everyone and everything. We are blessed beyond words to have Livee with us and even though sometimes we have our moments I never forget just how lucky I am. She is one awesome girl growing and changing with time. Please say a little extra prayer for Livs on Thursday she will have labs done at UIHC. Just routine follow-up, it has been wonderful to not be at any appointments etc...
Thanks for checking in on us.

Monday, April 30, 2007 4:14 PM CDT

Livee says "Thank you Dancers"!! The event at Planet X was very enjoyable for everyone. The kids had such a good time. The best part for me was watching the kids and having a chance to catch up with the adults.
One of these days I promise to take some time with this web page and do some updates. I know the pictures are outdated and all of that. We are just glad you continue to check in on Livees page, it means so much. We are not slated to go to UIHC until May 17th, just for lab work. We are so thankful that we just get to visit there every now and then. Livee has just done so well and for that we can't be thankful enough. Thanks for looking in!

Wednesday, April 25, 2007 4:10 PM CDT

Wow, have I been out of touch here, well as far as the web page and that my friends is a very good thing. We have just been living life like we should. Yipee!! Yipee!!
I have been working as much as possible any overtime that comes my way I try to work. Too bad we need money to survive. I could think of many other activities I would rather be enjoying.
Livee has her fun night at school this Friday night and then a dance marathon event on Sunday. The kids will get to enjoy going to Plant X in Cedar Rapids. I think she will be inviting one of her school friends to go along.
We don't go back to UIHC until May sometime just for labs. I can't tell you how awesome it is to not be there or even think about it. Thanks for checking in on Livee.

Monday, April 9, 2007 12:23 AM CDT

A wonderful Easter, this weekend was busy with family. On Saturday Olivia got to see her cousins Matthew and Morgan from South Carolina. Their family made a surprise visit back here to see everyone before they move to Hawaii in early Summer. Dwight (Dave's brother) and wife Jeanne will be making another journey with Dwights army career. He is a Doctor with the Army a vascular surgeon to be more precise. We all met at Daves sisters house in Central City and had a nice day with his family.
Then on Sunday some of my family came over to our house for the day. What a difference a year makes, last year we were cautious and overly protective of Livees health as she approached her 6 month mark post transplant. And now here we are "Praise God" each and every day.
Thanks for checking in, I am working must cut short.

Sunday, April 1, 2007 7:43 AM CDT

I thought I should say Hi to everyone checking in. The good news is there is nothing to report. Livee is doing great! She and I sat in the garage yesterday afternoon and watched the storm, it was kind of neat. Olivia had spent the night at a girlfriends on Friday night. I have been working this weekend including today, a project needs to be done so here we are. Not a very fun weekend but we are looking forward to next with Easter and family. We may color eggs later today it just depends on the weather etc...
Well it is time to start my exciting day at work, just until noon so that is not so bad.
Thanks for checking in, I think the next time Livee has labs will be in May.

Monday, March 19, 2007 7:51 AM CDT

Thanks for checking in today. I just wanted to say I am so happy, reason is Livee has her hair up in a pony tail for the first time in years. I know seems trivial but for me it is pretty special. She has it pulled back and then a hair band around the front, just like the big girls. Anyway I just wanted to share my little moment of joy.
We have been visiting Livs cousin in the hospital, she is recovering from hip surgery and may be released today or tomorrow.
I must get to work now. Keep prayers for all of our cancer families. The fight never ends but hope prevails.

Wednesday, March 14, 2007 12:24 AM CDT

Just a quick note to let everyone know Livee is doing fine. She still has a cough left over from her cold but seems to fine otherwise.
We visited her cousin last night at UIHC, she had hip surgery and will be there until next week. Livee and her other cousin played pool in the teen room while we were there. Also Olivia saw her friend "Bri" a camp counselor, she thought that was pretty neat. Livs is enjoying her Spring Break.
Thanks for checking in, more later.

Wednesday, March 7, 2007 12:07 AM CST

Livee is on the mend. She missed school Monday and Tuesday. Today is Daves birthday, so Livee is helping me plan for it making a card and gift and helping me shop. She keeps saying I have three things to do today, go to school, Daddy's birthday and swim lessons.
I am so glad Livee ended up with just an everyday kid type virus, I was worried since she had the fever. I think I can relax now.
We have been thinking of Cameron and wishing him only success with his stem cell transplant tomorrow. This can be the beginning of the end, the end of cancer and the beginning of a rejuvinated immune system ready to tackle the world. We pray for him to continue to get better and feel 100% soon.
Thanks for checking in on Livee, we know you are out there.

Monday, March 5, 2007 10:34 AM CST

Livee has been sick with a fever and cold. This all started on Saturday she was coughing and then the fever started, she continued with the fever until yet this morning. Hopefully she is on the mend, from talking with other parents this sounds like what their kids have had. I am watching her closely though. Big thing is making sure she is hydrated and eating. We have skated through without illness until now. Anytime she is sick the memories come flooding back but I must keep in mind she is now 19 months post transplant and when she gets ill to not panic. Keep things in perspective. I think she will be just fine, I must close as I am leaving for work. Grandma is coming to stay with Olivia.
Thanks for checking in.

Wednesday, February 28, 2007 8:49 PM CST

"3 Years Ago"

I remember vividly a sweet little girl having her first swim lesson just around the corner at Mercer Park Pool. Here she was her long long wavy hair floating a top the water as she tryed her best to please the instructor with every move. Ironically, we just got home tonight from Mercer Park only this time the little girl has shorter curly hair floating a top that water. It was 3 years ago today that little girl was told that she had AML Leukemia. That's right it was 3 years ago today that we were given the news and thrown into the world of cancer. The journey has been tough but look at Olivia now, she is and will be a "SURVIVOR". The bravery, courage, strength, and determination of this little person is unmatched. She continues to inspire and amaze us each day. God granted us a miracle, we thank Him everyday.

Thank you for friendship, support, and continued prayers as we travel this journey. It's all for Livee, keeping her strong, healthy and cancer free.

Saturday, February 17, 2007 9:28 PM CST

Today we were invited to a sledding party in Muscatine. Olivia and I joined Cameron Christiansen and his family along with some fellow Dance Marathoners. It was fun fun, thank you everyone. The drive over and back was slow due to drifting snow on the highway. We are home safe,sound and warm. We continue to pray for Cameron as he prepares for his stem cell transplant in the near future. We pray for his family as they face yet another challenge.

Today a comment was made that Livee and Cameron will marry someday now that would be quite the story. They are like two peas in a pod, the experiences they have the stories they could tell.

Last night Livee did not get her McDonalds instead she fell asleep. I know she was worn out from yesterdays procedure. Tonight we are getting ready to turn in as well.
Thanks for checking in again.

Friday, February 16, 2007 8:43 PM CST

~~~GOOD NEWS ~~~ GOOD NEWS ~~~ RESULTS CONCLUDE ALL CLEAR!!

We are so happy, this is officially 18 months post transplant for Olivia. God has blessed us in so many ways.
Livee was so brave and strong for her procedure. She decided she wanted to have everything done in the clinic. This is new for her, usually we go up to Floor #5 and she is put out. She said, Mom this time I want to have everything in the clinic so after much deciphering if this was best and what would work for her we decided to do it. So Livee had an IV with morphine (loopy med) and versed (forgetful med) she did real well. She cryed just a little when they did the extract of spinal and marrow samples. Who wouldn't this is a very painful procedure. I was so proud of her. She did end up getting sick a few times today just from no food and the med combo. She is doing fine now and had a nice nap. So now she is hungary and wants McDonalds, so it looks like Dad might be making a trip for her. She deserves a treat even if it is late. What parents do for their kids. (especially those that have been through this) We have so much to celebrate today. We don't go back to clinic for 3 months for a lab check only.
It was nice to see Kathy Whiteside today and Sue Benton, it has been a long time. No offense but from our angle we will keep it that way.
Thanks for looking in on Livee. The many prayers and continued support keep us going.

Tuesday, February 13, 2007 8:32 PM CST

Livee and I spent today together at home. School was canceled so it was fun to hang out and play. She has her valentines ready for tomorrow to hand out to the kids. It was one year ago tomorrow that Olivia had her first official visit to her class room to join in a Valentines Party. Tomorrow night Livee will have a private swimming lesson and then for the next few weeks. She really likes to swim but her lessons were cut short 3 years ago by her diagnosis. It feels so good to be in the place we are now. But the reminders are not far, for instance this Friday Livee has a spinal/marrow procedure. She is not scheduled until 4pm which means no food most of the day and keeping her busy busy. They are also including a couple more of her immunizations, which they will give when she is out.
Please keep Livee in your prayers as we approach this day. The fear is there but my game face will be ready and we will get through. Thank you for checking in.

Wednesday, February 7, 2007 3:01 PM CST

My bad, my bad, it was pointed out to me that I made a mistake on the total for Dance Marathon. It was not million but thousands instead. Thanks for pointing that out to me.
I guess it does not pay to hurry, but again for now I have to run. Sorry for the mistake.

Sunday, February 4, 2007 12:55 AM CST

~~~~~~~~~~~~~DANCERS YOU SHOULD BE PROUD~~~~~~~~~~~~~~~~~~~~
The 2007 Dance Marathon has come to a close, but will never end. These incredible students did the unimaginable and not only surpassed their goal of $750,000 but raised an unbelievable amount of $880,903,013. We are very proud to be part of this wonderful event.
On behalf of Olivia and all of her family we want to say "Thank You Dancers". Imagine what all of the money can accomplish by helping families at UIHC. Each and every day a new family is given the devestating news that their child has cancer. Even though the news is awful the experience and journey does not have to be partly because of the efforts of Dance Marathon. The doom and gloom of hospital stays are much more bearable because of games, books, videos, massages, gas and phone cards, beds, the whole bone marrow unit and so much more all because of Dance Marathon. This event is huge, I wish all of you could experience it. So I guess if you really want a cause to donate to this would be a good choice. I have their web page listed.
I promise to update Livees page with some new pictures of DM. It has been way to long since I have updated.
The other thing I want to mention is next Sunday at the Riverside Casino and Golf Resort they are having the 1st Anuual Chili Cookoff, the event starts at 1pm - 5pm all proceeds benefit the Leukemia & Lymphoma Society. It should be a lot of fun and a good way to get warm on a chili day!!! Ha !! Hope to see you there.

Thursday, February 1, 2007 10:20 PM CST

Get ready for Dance Marathon 2007, we are so excited. Our Morale group leader Sarah brought over the T-shirts that we had designed, a spin off from Olivia's Light the Night T-shirt in 2005. We changed it up a bit and added some things too. They look awesome, thank you morale group #37 we can't wait to see all of you with your shirts on Saturday. We should be arriving at DM sometime around 5:30 Friday. Olivia wants to skip school so she can come over early. I said not going to happen little lady. She was so cute tonight, when Sarah was here Livee showed her all of her things and explained in great detail about this one stuffed lion that I had when I was a little girl. She proceeded to tell Sarah about the lions neck and tail being broken and the whole story behind the lion. Here I thought Olivia never listened to me but I guess she was. Earlier tonight Livee and I went to my hair salon so my gal Ashley could put Livee's hair back for her. She washed it then styled it with some twists pulled back away from her face. It looks real cute, I thought maybe by having her hair done I would plant a seed in her head that hey this is really cool to have my hair done and out of my face. As you probably heard on the radio interview Livee does not like to comb her hair or have anyone comb it. Reminds of the days before diagnosis when Livee's hair was down the middle of her back and we would go round and round about combing it. Right Patti?
Anyway thanks for checking in on Livee. We will see all of you dancers and families tomorrow night.

Wednesday, January 31, 2007 7:59 PM CST

We are home relaxing after going to UIHC for our radio interview for the Children's Miracle Network/Dance Marathon. It went really well I think although Livee opted not to talk on air until the interview was over then she and another little girl read off the number to call.
So look out Dance Marathon we are ready to have some fun. Morale group #37 rocks, thanks for supporting Olivia and being so wonderful. I can't believe it is here already.
Livee is sleeping right now which is good for her to finally get a long nights rest. She needs to catch up every now and then. She is like the energizer bunny and will go and go and go. So I need to run for now and get some things done. Thanks for checking in and I will update soon.

Sunday, January 28, 2007 8:43 AM CST

Ok everyone, I have been busy busy and not updated in a while. For that I apologize and will try to do better. The good thing is no news is good news which means intermittent updates are good news.
I do have some very positive news to report, we received Olivia's results from her last lab tests they indicate that she have 100 % donor marrow. This is awesome news, Dads marrow continues to do it's job and provide what it should for Olivia. On another note she has recently had a cold and seems to be rebounding like she should. It's weird but if she gets something it is best to know that yes in fact she has a cold and not just a cough for no reason. If it is associated with an actual illness (cold) that is better and less worry. Each time it takes you back to original diagnosis. The fear will always be there.
Moving on, only one week until Dance Marathon 2007. It should be fun~fun~fun. Livee's dance group #37 has made up T-shirts using the same logo that we used for Light the Night in 2005. The butterfly design but they have added more info on the back. We are looking forward to seeing all of you there and of course getting to see families that we have not seen for a while too.
Prior to the event there is a radiothon being held at UIHC, I will be speaking on 100.7 The Fox @ 5:00pm Wednesday, this is all in affliation with Dance Marathon. A great intro and pre Dance event. Last year the radiothon was very successful and helped to raise even more money for the kids. So if you are so inclined please listen in.
Another event to announce is on Sunday February 11th The Leukemia & Lymphoma Society 1st annual "Chili Cookoff" @ The Riverside Casino, the event starts at 1pm until 5pm. All proceeds go directly to the Society, so come on down and join in the fun.
Thanks for checking in on Livee!! More later.

Thursday, January 11, 2007 3:43 PM CST

Finally a chance to update for you. All is well, Olivia's lab results were fine. They did draw a couple of viles to check her DNA. I did not know they were doing that but it was no problem. She is such a trooper and just goes with the flow of all of it. These kids can teach all of us a thing or two. We did accomplish a couple of things while at UIHC. We have our pre-op visit out of the way for February's procedure and the paper work is started. That means less time off work for me later. Anyway all is well.
Thanks for checking in on Livee.

Wednesday, January 10, 2007 3:29 PM CST

Livee will have routine labs done tomorrow. Say an extra prayer that all is well. It still scares me each time, we are never out of the woods but have come so far. I thank God everyday for Olivia.
She is such a 7 year old, she knows everything and has an answer for everything too. I know I let her get away with way to much. I am trying to do better, it only benefits her in the long run. I think most cancer parents do the same thing. Give them what they want they deserve it.
I wanted to let everyone know that if you are interested I can still get you an Angels calendar from the Leukemia and Lymphoma Society. They are $12.99 each and pretty awesome. The best part all proceeds go to the Society. If interested just let me know.
We are less than one month away from Dance Marathon 2007. It should be fun, we hope to see many familiar faces in the crowd. Please forgive me if I don't remember each of you, as you know there are hunderds of you to remember.
Signing off, thanks for looking in on Livee.

Friday, January 5, 2007 9:51 AM CST

Thanks for checking in with us. Livee is doing great, we are all getting back to reality after the long Holiday break.
Livee will have labs next Thursday the 11th just regular blood count check. We are pumping up for Dance Marathon which will be held February 2nd & 3rd. Our morale group is #37 (you all rock) says Livee!! It should be an awesome time.
I gotta run, at work. Talk soon.

Wednesday, December 27, 2006 1:10 PM CST

Thanks for checking in, Olivia is doing great. She has been playing with all of her new things. Yesterday she got to hang out with the neighbor boys that was after we visited my workplace to deliver a gift. Today we are picking up her cousin Tori so she can spend the night. Tomorrow we take Livees dog "Chocolate" for a day at the spa, just kidding hair and nails trimmed then Chocolate will visit the vet for her shots. She is way overdue on those. It would be so nice to never have to work again just to get all of these things done. I have been putting a few of the decorations away while I have time. We will leave the tree up for a while along with some of my favorite things. I have framed pictures of Livee with Santa from each year, I enjoy looking at those. She has changed and come so far since last year, it is amazing. We are so blessed and our gift continues. We are looking forward to another great year in 2007!!!

Please keep Cameron in your prayers he is battling a fever and some infection. Just another bump in the road. Hope he can move soon forward and have his stem cell transplant soon. Pray for healing and better days ahead.

Saturday, December 23, 2006 5:41 PM CST

HAPPY HOLIDAYS TO ALL OF YOU !!!!!!!!!

We want to wish all of you a safe and wonderful Christmas.

Livee's appointment on Thursday went well, she ended up having 3 immunizations done. We don't return until January 11th for labs and then at some point in February for a spinal/marrow. Won't worry about that now. Livee is having fun with her cousin Tori and of course loving the attention from Grandma and Grandpa too.

A time to think of those less fortunate and pray for peace and resolution around the world. Prayers for the Ruley family as they deal with the loss of Doug, prayers for Cameron that he continues to do well and the cancer is no longer there. We pray for all of the families dealing with cancer.

A time to celebrate Life and the real meaning of Christmas!!

Wednesday, December 20, 2006 10:55 AM CST

Today Livee and I are hanging out and plan to go to a movie this afternoon. We are watching her friend Maddy also, they are classmates and pretty good pals. She will be with us today and tomorrow. They have been real good playing and having fun together. I think we are taking off for Grandmas house on Friday. Dave will join us probably on Saturday, he usually hangs around to work and take care of Chocolate (Livee's dog for those that may not know). That is one downfall of having a little fluff ball around we need to make sure someone takes care of her. We can take her with us only if we are gone for a day or two.
Tomorrow we go to the clinic for Livee to get two more of her immunizations. She is not having labs or anything else done just the shots. After that is done I will take the girls to lunch.
The girls need something so I will add more later.

Monday, December 18, 2006 2:31 PM CST

Livee is pretty excited because she only has today and tomorrow left at school. I have been trying to figure out what the deal is with her and school. She is doing well and at her teacher conference she had an excellent report. However, the problem she has is conquering the fear of not being perfect or keeping up with the rest of the kids. She likes everything to be just so and that type of thing. She has mentioned she gets frustrated because she can't keep up with the others. I have done some research and know that children can have what they call late effects from the cancer treatment. Some of the things mentioned are:

1. organization
2. reading or reading comprehension
3. processing speed (may work slower)
4. visual memory (decoding letters & numbers)
5. understanding math concepts or remembering math facts

The other factors that play a role with these late effects are:

1. cancer diagnosis at an early age
2. cancer treatment involving the central nervous system
3. radiation to the total body
4. female gender-girls may be more at risk for cognitive
late effects

Livee fits in to all of these catagories, I am trying to be pro-active instead of looking back and wishing I had done something sooner. I believe since she missed kindergarten and most of 1st grade this could play a major role in her frustration too. Don't ask me why I felt compelled to share this with everyone but I guess it is my way to communicate with you my friends via Livee's page. Olivia is actually doing quite well it's probably me being paranoid. Time will help give me some answers.

I have some time away from work now starting on Wednesday. I am looking forward to spending time with Livee and catching up. I need to run for now, thanks for checking in.

Wednesday, December 13, 2006 12:22 AM CST

Things are going fine, Livee will receive two more immunizations next Thursday. Yipee !!!!! I finally managed to get some gifts wrapped and cards sent.
I wanted to share something with all of you, last weekend when were watching The Polar Express at the IMAX, Olivia was sitting next to Cameron (which in itself is an awesome sight) anyway I looked over and both Livee and Cameron were singing their little hearts out, the part when the kids in the movie are singing. It brought tears to my eyes just knowing that they are our "Miracles" for both myself and Dave also for Richard and Marci. We have the best Christmas gift ever. I thank God each and every day if not more often than that.
Just wanted to say thanks for continuing to follow Livees journey and saying those prayers for all the children dealing with the cancer beast.
Happy Holidays to all of the Dance Marathon Group especially group #37!!! You rock!!!!

Sunday, December 10, 2006 2:27 PM CST

Sorry for the delay in updating. Let's see since the last update I am happy to say Cameron's CT scan showed yet more improvement. Yeah for him!!!
Last Wednesday night Livee and I talked in front of a huge Dance Marathon group. This year they have a record number of Dancers that says alot for this group, it shows how much they care. We want to send a sincere thank you to them for taking the time to care and be part of this wonderful orginization. The reason for our visit is to talk with them and explain the purpose of why they dance, hopefully give them even more incentive to keep up the fantastic job. By putting a face with Livee's story and having a clearer understanding of what it's like to be a family that has gone through cancer. Without the support and time these college students share with cancer families it would for sure be even more difficult during those long stays in the hospital. Every minute they give, every dollar they collect does not go unnoticed by the families. They make a HUGE difference, what they do matters to us. I enjoy meeting with them like I told them "It's about the Kids not about cancer". An example of how they help families is on Saturday they entertained the Dance Marathon families with a day at the Science station and the movie Polar Express at the IMAX in Cedar Rapids. The kids had a visit from Santa and were treated to a gift. They also provided lunch and popcorn for the movie. Now that is an awesome thing for these kids. Thanks to all of you Dancers for saying Hi or hanging out with Livee and making her day!! Our family truly appreciates what you do for us. We can't wait for "The Big Dance" in February.
Thursday was a day of emotions, David and I went to Doug Ruleys funeral service. We saw many familiar faces there. It shows how much Doug was loved and that he certainly made an impact on everyone that knew him. Ruth and Dan are incredible people and been through so much. I hope in the days, weeks, and years ahead they will find peace somehow.

I somehow do not have many of the things done like I had planned. It's sort of like when you go on vacation you don't pack until the last minute, well for me Christmas is apparently the same. I am not ready until the last minute. Maybe I will snap out of it. My priorities are so different now. As part of my Christmas decor I have these letters in red velvet that spell out BELIEVE, as only Dave would point out that if you take the letter V and switch it with the letter E it would spell BE LIVEE. How ironic that those letters spell out the reason we Believe!!! Maybe too much Polar Express viewing or we just need to get out more, huh?
Anyway thanks for checking in. No news is good news, boring is good. (Right Marci?)

Wednesday, December 6, 2006 3:06 PM CST

I have the day off today and thought I would finish up some loose ends but that has not happened. I feel like I might be fighting a cold or something, my eyes water and itch like crazy. I refuse to get sick I don't have time right? I just need rest which also does not come easy. I keep thinking about everything instead of relaxing. I am sure I will feel better tomorrow.
Tonight we are talking to a group of Dance Marathon students at the IMU, they have been a great support system for our family and many others. I will be there unless I really start feeling worse.
Livee is at school having fun I am sure. She is such a card and so much fun. One thing about it she will always give me a run for my money. You can imagine she is so mature in some ways but yet still a 7 year old. She will mention sometimes "you know Mom I am only 7 and I missed kindergarten and only had 55 days of 1st grade", she realizes that her life was a little different than the other kids. She mentioned just the other day the month and year she was diagnosed. So you know she thinks about it but fortunately does not dwell. Cancer will always be part of her life but I am not sure how much she will retain in the future. We have always been open and explained to her the best we can anything and everything to hopefully make it easier for her. We can all learn from her if we listen and learn from what she is saying. Maybe we can make it better for others that face this rotten disease.
There is a reason for everything and a purpose behind it. That is what I am working on now to find my way.
Please pray that Cameron's CT today shows more shrinkage of the tumors or that they are gone. That would be the best case. We are thinking of the Christiansen Family and the Ruley family's today.

Monday, December 4, 2006 9:43 AM CST

I need to clarify Dougs page is under carepages, then
DougRuleythirdtimearound. Thanks

Monday, December 4, 2006 9:32 AM CST

A new star shone last night, the stars name is "Doug", another Angel was called to Heaven. The Ruley family said goodbye to their precious son Sunday morning. If you wish to send condolences to them the web is under carepages.com Doug Ruley "Thirdtimearound".
Another child taken away because of cancer, how unfair? Our hearts are with the Ruley family. God bless Ruth,Dan, Rebekah, and Dawn.

Friday, December 1, 2006 7:54 AM CST

Yesterday's reports are all good, Livee's counts are all in order. Yeah!!! Yeah!!! While we were in the clinic she received 2 immunizations and then we go back in two weeks for a couple more. This is totally an awesome thing, her body is functioning just as normal as yours or mine. I think about where we were last year at this time. We had to watch every move and heed caution to anyone or anything Livee came in contact with. I am overjoyed with her progress and that she is a healthy girl. Believe in Miracles, we have one!!!
I finished my Christmas shopping yesterday, and now need to pull out the decorations. Now that should be interesting.
I will add more later I need to start work now.
Thanks for checking in.

Wednesday, November 29, 2006 3:54 PM CST

I am mentally preparing myself for tomorrow. Olivia will have labs drawn to check counts and then more than likely a couple of her immunizations. Hopefully all will be good. We do not need any unexpected surpises ever again.
She is excited because she gets to go to school later than usual. Livee likes school and is doing well but seems to like her time away too. I will probably have her back to school by mid morning. I have the rest of the day off, so I will try to get some things accomplished.
Thanks for checking in and please squeeze in a prayer for Livee.

Sunday, November 26, 2006 9:02 PM CST

See I told you I would update soon.
I forgot to mention that Saturday Olivia was part of the Jingle Cross Rock. This event is held to raise money for the Childrens Hospital. One of the head surgeons at UIHC, Dr John Meehan is the mastermind of this event. Some of the worlds best cyclist participate right here in Iowa City. Olivia started 3 races by saying "riders ready"? then she rings the official cow bell then they're off. We were interviewed by KCRG and on the news Saturday night. You can go to KCRG.com to see the story. Livee's friend Cameron also started a couple of races. It was nice to see Cameron and his family.
See you next posting.

Sunday, November 26, 2006 7:55 PM CST

A new look to Olivia's site. The picture on the main page is her 2nd grade photo. I may be changing this site over to the carepages site. I will for sure let everyone know if I choose to do that.

We had a very nice Thanksgiving with family, the whole clan was there. There is alot to be thankful for this year. Olivia is healthy and moving on, we pray this always be the case. She will go for labs on Thursday and receive a couple of immunizations. Not fun for her but a good thing overall. I pray every day for her to continue to stay cancer free. We are happy for our friend Cameron and his family. He is responding well to treatment and also moving forward. Our hearts go out to Doug Ruley and his family as they embrace their time with Doug. We send prayers of comfort to their family.

Thanks for checking in and I promise to update soon.

Thursday, November 23, 2006 12:54 AM CST

HAPPY THANKSGIVING TO ALL OF YOU !!!!!!

We are celebrating with family on Saturday as that is what works for everyones schedule. Today we are having our own family dinner here at home. Giving thanks for the many blessings we have received. Nothing less than a miracle is what we have been given. Olivia's gift from her Dad, a second chance at life. We are so thankful for His healing and our healthy girl. We can't ask why does this have to happen but learn and become stronger people from it.

The only time I question is when the cancer has to come back again and again. Why is a family given such hope and then that hope fades away? I am speaking of the Ruley family. Doug has been so courageous for so many years, his family by his side each and every day. This is a very difficult time for them. As we celebrate with our families let's think of them with thoughts and prayers of comfort and support. May Gods embrace surround them as He opens his arms to Doug. We are thinking of you.

Monday, November 20, 2006 10:43 AM CST

Livee is doing great, we went to the hospital yesterday to see Cameron. The good news is that they get to go home today. Anytime you can be home is much better than being at UIHC. No offense anyone but I know you understand. While we were at the hospital Livee pulled out her tooth. She was so proud she said "Mom I think I need a Doctor I am bleeding" I told her she was fine. Of course last night the tooth fairy did find Livee.
Just a reminder to everyone that I have the 2007 Angels Calendars for the Leukemia & Lymphoma Society. They are priced at $12.99 with all proceeds going to the society. You can let me know or go direct to their web page @ www.lls.org/ia.littleangels, I will have them for some time. I know with the Holidays we all get busy busy. We are reminded everyday that cancer is relentless and we need to find a cure.
Our prayers of comfort are with the Ruley family.

Saturday, November 18, 2006 3:32 PM CST

I worked this morning only. I thought we would be working all day but we got everything done early. Livee has been hanging out with Dad. She is a little disappointed today because she was going to spend the night with her friend Maddy but that won't work out because Maddy is sick. Our neighbor Max was outside so Livs went out to play with him. Also I did tell Livee that we will for sure tomorrow go see Cameron at UIHC. He is there to receive more treatments. The good news is he is doing well and the tumors appeared to be smaller according to the CT scan. Great news indeed.

I have been trying to get Livee to make out her Christmas wish list for Santa. She went through the ads and marked something on just about every page. It does not seem possible that Thanksgiving is upon us and Christmas is around the corner. We truly have much to be thankful for we have a healthy child. I thank God each and everyday for her.

We also continue to send prayers of comfort and peace to Doug Ruley and his family. He is home now and has a new kitty to be by his side. He had an early Christmas with Santa coming to see him. God bless the Ruley family.

Thursday, November 16, 2006 10:16 AM CST

Wanted to send a quick update. A couple of things to report one is Livee has her next appointment on November 30th, just labs and then she will get some of her immunizations that day. She has been very busy with school and keeping up with friends and activities.
We need a special prayer request for Doug Ruley and his family. They have found that the cancer is back 100% in his marrow. They have decided to go home and spend time together as a family. Doug can enjoy his favorite thing in the world which are his kitties. We send prayers of comfort and courage to their family. God bless the Ruley family.

Monday, November 13, 2006 12:17 AM CST

Not much happening, we had a busy weekend. Olivia had company at school on Friday. Cousin Tori and Grandma came up to have lunch with Livee and spend a little time with her at school. They had a great time, then after school Livee went with them to Fairfield to spend the weekend. I had thought I was working both Saturday and Sunday turns out we did not work either. So I had some time with friends and got some things done. I try to take advantage of that kind of time to accomplish a few things anyway.
I am working now so must get a move on.

Please keep our friends Cameron and Doug in your prayers. Why does cancer have to be so relentless? Why can't we find a cure? Remember-hope survives, now and forever and the fight will never end.

Thursday, November 9, 2006 12:07 AM CST

Good news to report on Livee. The results are back concerning her immune system and lymphocytes testing. All signs show her immune system to be functioning normally. Every component is responding like it should, this means she will be immunized at her next appointment at UIHC. This is a wonderful sign and another step in the right direction. Praise God and I do everyday, I thank him and thank him for allowing Livee to remain healthy and happy.

I will add more later but am at work. Also if you are interested I do have calendars available. All proceeds go to The Leukemia and Lymphoma Society in honor of Livee! Thanks for checking in everyone.

Saturday, November 4, 2006 4:55 PM CST

I am happy to announce the new Angels calendars are here and they look awesome. Each month features a child with their own cancer story. Olivia is the month of February 2007. If you are interested here is the web address:
www.lls.org/ia.littleangels

You may either order directly on the web page or I can get one for you. They are priced at $12.99 each with all proceeds going to the Leukemia & Lymphoma Society. Just let me know!!!

I already have Livees new school picture in a frame on the wall with the rest of her pictures. They turned out real nice. I will get one posted on her page when I get access to a scanner printer. Remember I have an antique for a computer at home and am not to update from on my work computer.

Livee has a friend over and they are dancing and singing in the living room. I need to go make them some dinner but will update again soon.
Thanks for checking in and please keep our friends Cameron and Doug in your prayers.

Thursday, November 2, 2006 8:54 PM CST

Livee is doing great-she just finished her evening shower and is rather silly. Today I am excited because we have Olivia's school pictures back. This is pretty special to me since it is her first official school picture.

Now as a proud parent speaking I must also tell you other news. Today the Leukemia & Lymphoma Society 2007 Angels calendars arrived. Olivia's story is featured for the month of February 2007. I have not yet seen them but will see one tomorrow. The calendars are for sale at $12.99 each with all proceeds going directly to the society. Ann Conkin the chairperson for this area said they are awesome. You can buy these directly through me or through them. I will update with more details soon. Please tell all of your friends and family about them.
Please keep them in mind for your Christmas gifts or just to have. Who doesn't need a new calendar each year? Every purchase is one step closer to them finding a cure for cancer. There is no cure, but hope.
Please let me know if you are interested and I will be more than happy to get one for you. If I run out I can always get more.
As always thank you for checking in and saying prayers for all of us affected by cancer.

Monday, October 30, 2006 10:14 AM CST

I can't believe it has taken me so long again to update. I guess time goes by quickly. Friday some of the kids in Livee's class came down with a cough and one little girl had a fever, so she was sent home. The school called me to inform me of this. Livs seems fine although she has had a little cough. I still check her forhead at least once a day to make sure she feels fine and I ask her probably 2 - 3 times everyday "how are you doing?" being paranoid goes with the territory I think.
Livee is doing fine getting excited for Halloween. She is going to be the guy from Scream, of course she likes the scary stuff no princess for her. That's ok as long as she has fun. She surprised me with cupcakes yesterday for my birthday tomorrow. I am working so I must cut this short for now. I will update soon.

Thursday, October 26, 2006 1:13 PM CDT

Sorry for the delay in updating.
We did not go to Bloomsbury Farm, which from what I hear was the right choice. Livee had a little sniffle and an occassional cough so I thought it looked like rain that direction and we decided not to go. Then on Saturday night we did go to my friends wedding, now that turned out to be a chilling experience. The reason was it was held in a barn in the Amana's. I mean a real barn so the air was moving through and it was chilly cold. Livee did go with and we made the best of it, I felt sorry for the couple because I am sure they had no idea it would be so darn cold. Anyway it was fun and we did get to see some of our friends. I need to close.

Thursday, October 19, 2006 12:44 AM CDT

Nothing much to report, that's a good thing. Livee is liking school and all of her friends. The schedule is better now she is getting to bed earlier and doing more things for herself. I must admit I am guilty of doing many things for Livee that she is more than capable of doing. You rather get used to doing everything for your child when they are in the hospital. It takes a while to undo some of those habits I guess.
Anyway we are looking forward to the weekend going to Bloomsberry Farm in Atkins. Also Saturday night we are going to a wedding, a long time friend of mine is getting married in the Amanas. Hopefully the rain will hold off until Sunday?
I need to run before I get in trouble for being on the computer to long. More later.

Monday, October 16, 2006 3:05 PM CDT

I asked Livee if she stuck her tongue out for her pictures, she just looked at me like yeah right Mom! Her hair was combed and she even had a headband in when we left home. Maybe once I get those pictures I can change the picture on her main page- about time right? Speaking of pictures etc... soon the Leukemia and Lymphoma Society will be selling these awesome calenders for next year. Each month features a child that has had one of these type of cancer. Olivia will be one of those children, however you may not even recognize her. Her picture for the calender was taken back in March I believe it was. Her hair is not even an inch long her two front teeth are sort of coming in and she has new glasses since then. I will for sure be selling the calenders when I know they are available. All of the proceeds go to support the Society. I am anxious to see them and read all of the different stories.

Livee had a friend over to play on Saturday and then a surprise visit from family on Sunday. What would we do without family? The constant support is always welcome. We still walk on that tight rope, praying we don't fall off.

Our friend Cameron is doing well, they have harvested for his future stem cell transplant. We pray that his cancer will be gone forever. Miracles happen everyday---Just look at Livee!!!!

Thursday, October 12, 2006 6:21 PM CDT

Just wanted to report that Livees appointment today went fine. All of her numbers are within the normal range. They will be checking her labs to see if her lymphocytes are doing their thing, if so she will get immunized. Because she had radiation pre-transplant anything she had previously was wiped out therefore they need to do these vaccines again. She did receive a flu shot today. Livee was ok with it no big deal. Tomorrow she has school pictures taken. I am of course excited about that since it will be her 1st official school photo and can exchange pictures with her friends. What to wear, what to wear? Just kidding, it really does not matter to me as long as she gets her hair combed.
Thanks for checking in. I will update sometime soon.

Monday, October 9, 2006 7:52 AM CDT

The weekend was great- Livee and I went to my parents to visit. We ended up going to a parade Saturday morning that thing lasted 2 hours and 15 minutes. It was awesome, of course we have lots of candy. I am thinking why buy for Halloween just use that.
Anyway Livee goes for labs this Thursday we pray all will be fine. She has done so well and skated along in the right direction. I am always optimistic but with caution or as I say guarded optimism. A person can never be too comfortable or it seems the ball drops. They will get what they need to do the testing on the lymphocytes then they can finally determine if she is ready for immunizations. Hopefully just in time for the cold and flu season.
Please keep our friends Cameron and Doug in your thoughts, these kids have endured way to much at their young age. No child should have to deal with this, so please keep the prayers coming. As always thanks for checking in on Livee.

Thursday, October 5, 2006 7:31 AM CDT

What a breath taking beautiful morning-there is nothing like a crisp sunny fall morn. Don't ask me why but today I just want to say how thankful I am for all that I have - especially Livee!
Maybe this is the turning point or something-I have been a little down lately. I think because work is slow and I have not been utilizing my potential in many ways. I think the fear bug creeps into my thoughts too. Maybe it's a pre-mid life thing Ha! Anyway I am very thankful and appreciate all of you continuing to check in on Livs.
Please say prayers for Doug and Cameron as they continue their journey forward.
Also a step in the right direction this morning too, Livee finally put on a headband to keep her hair back away from her face. She has been somewhat reluctant to do anything with her hair. So I praised the thought and said how awesome it looked, now she just needs to comb it more often. One step at a time right?

Friday, September 29, 2006 7:29 AM CDT

Last night we went to UIHC to see Cameron and Marci. They are doing well under the circumstances. Livee and I took them up a care package and of course fun things for Cameron. Olivia made Cameron an awesome poster with his name and stickers galore. Something to brighten up his room, she also made one for Conner. Marci and I talked about what's to come and shed a few tears. The road ahead will be tough but they are a strong family and Cameron has what it takes.
The kids played video games and went to the evening activity which was Bingo on the 2nd floor. It felt weird and scary to be there because of so many memories but at the same time we were there for so long it seemed ok. Believe me the only way I want to be there is as a visitor.
Livee seemed right at home, she and Cameron were sitting in the bed together playing the games. They were so darn cute together definitely two peas in a pod. Please continue praying for all of these children as they endure this rotten disease.
We are looking forward to a fun weekend, no special plans yet but am working on that. I have plenty of chores that need done but somehow those are always pushed to the back burner.
Thanks for checking in, did you check out the new pictures??
I am working on the edit part to get them down to size.

Tuesday, September 26, 2006 10:23 AM CDT

Light the Night was a success and a wonderful time. It was so nice to see so many families again. We managed to get all of the balloons filled with just a few blowing in the wind and some popping. It was fun to be part of such an awesome event. Thank you Ann Conkin for all of your work and dedication. I ended up winning the raffle for the quilt, the blocks represent families and teams from the 2005 walk. Olivia and Doug have a block since they were the honored heroes last year. I have not decided what I am going to do with the quilt but will display, donate, or pass it on to Livee. It is rather large and will need a special place.

Tomorrow will be the day Cameron returns to UIHC to start chemo treatments. Please keep their family in prayer as they begin this journey. Cameron is a very strong young man and I know he will do fine. He and Livee are good buddies, they are pretty much the same age. We will be seeing them once they return.

Thanks for checking in and don't give up on new pictures coming soon. (to a theatre near you) Ha!!

Thursday, September 21, 2006 9:48 AM CDT

Livee has been very busy with school and play. Not much to report which is always a good thing. We are looking forward to the Light the Night Walk this Saturday here in Iowa City.
Also Cameron had his surgery yesterday, it went well for him but a very long day. The next step will be intense chemotherapy to hopefully eliminate the two spots they found on his liver. Our prayers are often and loud for the long road ahead of him. He can do this. Please keep the Christiansen Family in your prayers.

I will update soon. Hopefully with some birthday pictures.

Tuesday, September 19, 2006 7:28 AM CDT

Whoops, yesterdays journal had a few errors. Must be tired from the weekend. Anyway I will slow down and pay closer attention huh?
Livee is having some trouble getting around in the mornings. Anyone that knows Livs knows she is not a morning person. We try to get to bed early but it just does not work out sometimes. So we will keep working on a better routine. Livee is so contrary and determined, it wears on me but I know God gave her that talent so she could get through all of her treatment etc... Being strong willed must have come from Dad, right? The truth is I am very much like that too. The apple never falls far from the tree as they say.
I need to make this short but please keep checking in.
Remember an extra prayer for Cameron, he will have surgery tomorrow.

Monday, September 18, 2006 3:24 PM CDT

Here we are back at work already. It seems the weekend just started. Livee had a wonderful time with her Grandparents and cousin Tori. This week at school each child has a week called "it's all about me" so this is Livee's week. They take pictures and special items they may want to share with classmates. It should be fun for them. Otherwise Livee is fine and full of spunk. I did find out they could not complete the lab work they intended to check her lymphocytes with last time. An electricity malfuntion at the VA hospital? So her next labs are scheduled for her October 12th they will use that to test from. I could take her in earlier is I felt I wanted to. Once they see what the lymphocytes are doing they can determine if she is ready to be re-immunized. We will see at that point.

Please keep Cameron and his family in your prayers, as they are going through this difficult time.

Friday, September 15, 2006 9:16 AM CDT

Livee is doing fine, she is spending this weekend with Grandma and Grandpa. They will be going to the kids day parade in Fairfield. I am fortunate enough to have a ticket to the Iowa game tomorrow. It should be fun and crowded no doubt.

Today we ask for prayers for Livee's friend Cameron. Cancer is back again, they found a couple of spots near/in his liver. He has a rough road ahead with very intense chemo, surgery and then a stem cell transplant. Our prayers are with Marci and Richard as they face this uncertain and difficult path. They have a web page set up for Cameron at www.carepages.com hope4cameron. If you want to send a message. Cameron and Livee have become pretty good buds. They had such a great time at the Iowa game September 2nd and at Livee's birthday party last Saturday. It's just so unfair to these kids to have to go through all of this. They need to just be kids and not have to deal with cancer.

Today is the last day of the Radiothon for Children's Miracle Network on KHAK 98.1 also next Saturday is the Light the Night walk here in Iowa City.

Thanks for checking in.

Tuesday, September 12, 2006 7:39 AM CDT

HAPPY BIRTHDAY LIVEE !!!!!!!!! HAPPY BIRTHDAY LIVEE !!!!!!!

Today Olivia is 7 years old. We have been celebrating since Saturday. She had her birthday party at the Circus with some of her friends. They had such a good time, I think the limo ride there and back was as big of a hit as the actual circus. I have lots of pictures to be developed sometime soon. Then on Sunday we had family over to celebrate several birthdays along with Livee's. Livee and my Mom share today as their big day and then my brother Ron and sister-in-law Kathryn celebrate theirs on September 15th. I also have another brother and sister-in-law that share July 21st as their birthdays.
Tonight we will celebrate Livee at home just the three of us. We are so thankful for what we have and the fact that we can celebrate this special occassion with her.

Remember today the radiothon starts on KHAK 98.1 FM. They help The Children's Miracle Network which in turn supports all families at UIHC. When you listen to the stories you realize how important even the smallest donation can help. Thanks for checking in, and have a great day.

Friday, September 8, 2006 3:05 PM CDT

Here we are the end of the week already. This weekend is going to be busy again. Livee and some of her friends will be enjoying the Circus tomorrow. I think I am looking forward to it as much as she is. I don't recall ever seeing a real circus. I promise to have pictures posted after her Birthday etc... I am rather slow at updating as you already know. At work I am not really allowed to update pictures and that type of thing and my computer at home is rather slow and older.
I will be running around tonight getting this and that for tomorrow hopefully my list is complete.
Please tune into KHAK on your radio starting Tuesday the 12th. They will be having their 10th annual radiothon in conjunction with the Children's Miracle Network. What an excellent way to reach so many people to help with the cause. Any donation is appreciated no matter how big or small. The children benefit so much from these events. Thanks for caring and checking in. Pray for cure!!!!

"Liveestrong"

Tuesday, September 5, 2006 2:43 PM CDT

What a great day for a football game. We had a wonderful time. The best part was seeing so many of you again. Those of us that have a child that has dealt with cancer will always have a special connection an understanding. Maybe someday we can all collaborate our knowledge and experiences and write a book to help others deal. Anyway it's just great to see the kids playing and jumping around with so much energy. Thanks to all of you Dance Marathoners your support and giving of your time mean the world.

We are getting ready for Livee's birthday party this Saturday, we are going to the Circus in Cedar Rapids. It should be lots of fun. This Sunday we will celebrate with family. Livee's birthday is Tuesday September 12, she shares that special day with my Mom. My two favorite girls in the world!!!!!

More later- Thanks for checking in.

Wednesday, August 30, 2006 10:43 AM CDT

Livee is doing great, she is so exhausted when she gets home from school. I think a whole day of thinking and activity will take a little getting used to. Last night she fell asleep on the couch at 6pm and slept until 8:30. Bad timing but she really needs to keep rested so she does not get to run down. She now likes to go to the park around the corner and ride her bike in the big parking lot. That apparently will be our new hangout for now.
We are looking forward to the game on Saturday and seeing all of you Make-A-Wish families. It appears the weather will cooperate but we do live in Iowa right?
See you there!! Go Hawks!!

Sunday, August 27, 2006 8:34 PM CDT

Livee has enjoyed her first week of 2nd grade. It was so nice for her to start at the beginning of the school year with the rest of her classmates. She seems to really like it and is learning everyday. The routine is getting better too, earlier to bed makes such a difference in the mornings. I drop her off around 7:10 so I can get to work by 7:30. I try to have her pick our her clothes the night before to save time. So far she has not had any homework but I am sure we will be seeing some this week.

We will be seeing the Hawkeyes play this Saturday compliments of Make A Wish and The Iowa Alumni Foundation. The kids get to meet the players, cheerleaders, coach, and of course Herky. It should be fun and it looks like the weather is going to be great.

Thanks for checking in and keep the kids in your prayers.

Tuesday, August 22, 2006 10:17 AM CDT

Livee enjoyed her 1st day as a 2nd grader. She was so exhausted that she went to sleep at 6:30 and slept the whole night. It will take a while to adjust to the new schedule. Not much going on, I am plugging away at work. Right now I am working in a different department, which is rather nice for a change. As long as I keep busy I am good to go.
I am trying to plan Livee's birthday party having her decide for sure what, who how many etc... I think we are going to the Circus.
Thanks for checking in, my break is over. More later.

Friday, August 18, 2006 12:32 AM CDT

TODAY WE CELEBRATE!!!!!
TODAY WE GIVE THANKS!!!!!
TODAY WE KNOW PRAYERS ARE ANSWERED!!!!!!!!!

TODAY IS ONE YEAR SINCE OLIVIA'S TRANSPLANT!!!!!!!!!!!!!!!

Just thinking about where she has been and where she is now. Last night we went to her ice cream social at school it sorta hit me, the reality of everything. Knowing a year ago where Livee was and now starting 2nd grade on Monday. How awesome to speak those words and see only a bright future ahead.

Yesterday afternoon was spent at Build-A-Bear in Coral Ridge Mall. The bicycle club sponsered this event for the kids. A special thank you to Dr. Meehan and those involved for a wonderful afternoon. Each child picked from 4 bears and then named and stuffed their bear, they also provided 1 t-shirt. If you wanted to pick out other items that was up to purchase. Of course you can't just walk away without the full ensemble and then some. It was so nice to see and hear about all of you, Cameron, Doug, Dawson, Kaitlyn, and Ambrose. We see so many familiar faces, we may not know a name or an exact story but we have seen you at clinic or in passing. Kudos goes out to each parent for having the courage to carry on and putting on your brave face. We are the choosen ones to help our children win this war.

I thought Livs and I would swim today but the weather had another plan I guess. We may go to a movie or something and then tonight have a celebration when Dave gets home. This is a very special day for Dave and Livee. They have a lifetime bond no matter what. He provided the miracle to give Livee a second chance. Praise God !!!!!!!!!

Wednesday, August 16, 2006 7:35 AM CDT

Just a quick note to everyone.
Olivia had a wonderful time at Adventureland with her friend Maddy. They rode so many rides but of course liked the arcades and games so they could win the fabulous prizes. We needed a few more stuffed animals to add to the collection. It's fun to no matter what though. I was wrong on the crowd prediction, I think the leftover State Fair crowd came to Adventureland, sometimes the wait for a ride was an hour or more. We made a whole day of it and returned home around 10:30 pm. This week Livee is at Patti's with some of her playmates from the past. She loves that because she is the oldest and a helper to Patti. Tomorrow we go to Build-A-Bear compliments of the peds oncology department, the kids can build whatever they want. Then this Saturday night Livee is invited to her first official sleepover with a friend. They have plans of swimming, pizza, movies, and maybe a little sleep. Actually if they stay up late it will work to our advantage in hopes that Sunday night she will get to bed early and be ready for school on Monday. Hard to believe the summer is coming to a close already. I am so excited for Livee starting the 2nd grade and being there from the beginning of the school year along with the rest of the kids and she will have her 1st school picture taken whenever that occurs. How awesome to be able to say that. I need to get to work but will add more later. Thanks for checking in.

Friday, August 11, 2006 5:07 PM CDT

More good news to add to yesterdays report. The final results from the spinal and marrow aspirates showed no cancer cells and that the marrow cells that they did see are in fact male donor cells, exactly what we want. God answered our prayers and for that we are so thankful. When I think back to just one year ago and where we were then, just starting the transplant process and treating Livee with more chemo then radiation, and now off all meds, her hair growing as fast as it can with beautiful curls, and mostly she is healthy.
They are doing some additional testing on the blood work to check her lymphocytes. This will determine when she will be reimmunized. Not exciting to most but very exciting for us to know she is moving in this direction and achieving normalcy in her immune system.
We are headed to Adventureland tomorrow and it sounds like the weather should be great.
Thanks for checking in on Livee!!!

Thursday, August 10, 2006 12:24 AM CDT

Almost 1 year since transplant and good news to report, Livee's spinal/marrow preliminary results are good and no cancer. Only 1 white cell in the spinal fluid, (considered normal) we are so elated with this news. We won't know until later today the complete results of the marrow aspirate. We were at UIHC early around 7am prompt which is good to be the first ones. Since Livee can't eat of course before hand and being 1st assures they won't be running behind from other surgeries. We left there at 9:15 and are home just having fun, talking on the walkie talkies and making tents inside who knows what is next on the agenda.
Also we don't have another spinal until 6 months from now, that is so awesome to be able to say that. Livee has had over 30 spinals, so this is great news for her.
I know tonight we will eat at Slugger's to celebrate the news. Livee loves that place. On Saturday we are going to Adventureland, hopefully the crowd will all be at the State Fair and not Adventureland.
We are so relieved with our news today. It never gets any easier from the mental standpoint. The mind games and millions of thoughts running through your head. Just trying to sort through all of it. Each time reminds you of past visits but also makes you realize how far Livee has come since this journey began. So many blessings to be thankful for.

Monday, August 7, 2006 3:10 PM CDT

Livee is currently at Grandma's until tomorrow or Wednesday. Her summer program ended at Hoover on Friday so this week and next I have alternative daycare plans. I did take vacation days for Wednesday, Thursday, and Friday. I am starting my pre spinal/marrow worrying which Livs will have on Thursday. It's like walking on a tight rope and wondering when your going to fall off or climbing a mountain almost to the top and falling down. I try try to keep only positive thoughts but the fear once again steps in the way. I think since she had the fever last week and has been coughing an occasional cough it reminds me of the past. I will trust God to help us through this and give us guidance like he always does.
I talked with my Mom earlier and Livee was doing fine, she finally had 9 1/2 hours of sleep last night. I know she has been so busy with her friends and so active she needed to catch up. So I guess with that being said I should quit the worrying, right? Livee has been so strong and come this far we just want to keep moving forward, Cancer Free!!
Thanks for checking in and I intend to update more pictures soon. Maybe one of Livs and Lance Armstrong.

Thursday, August 3, 2006 12:24 AM CDT

Exciting news, Olivia pulled out her tooth last night. It was basically just hanging there so I gave her a piece of floss and she put around the tooth and yanked. She was so proud of herself. The tooth fairy did make a visit too.
Tuesday I stayed home with Livs she had a fever that started on Tuesday evening and continued into Wednesday morning. I tryed not to panic but did call her Doc, he said to make sure the fever does not rise and watch for any other signs. I think she has a summer cold since the humidity has been so high and she has been swimming quite often. Anyway the good news is she seems much better and nothing else is going on with her, just a regular kid cold. I even forgot that I could give her tylenol now is she gets a temp, before we had to call first then have her be seen before we could administer any tylenol. I am learning all over again how to live, and it is the best feeling in the world.
I must run and get back to work now. I did update a picture of Livs Dance reciptal, excuse the lipstick but it was a requirement.

Sunday, July 30, 2006 4:28 PM CDT

Friday we did get to hear and see Lance Armstrong. The message was flat out we need to find a cure for cancer and The Lance Armstrong Foundation is ready to meet the challenge. Sometimes I am not sure that the political arena is the answer, they have done nothing but cut budgets for research but Senators Harkin and Kerry are trying to change that. What ever it takes to find the funds and continue the research.
Livee and a couple of other children got to go to Lance's room and get an autograph and some photos. He was real accomodating and cordial of course there was security everywhere.
Yesterday and today we have been in our pool trying to stay cool. We wait until mid to late afternoon so it's not totally unbearable. Olivia is loving it and not afraid of going underwater and swimming. This is the first opportunity she has had in over 2 summers to swim and get that beautiful tan of hers. We slather her in sunscreen 50 , since she had radiation her skin can be a concern and at greater risk for cancer possibly. But we do what we can and just like seeing her being a kid and having fun.
Please continue to pray for Doug and recovery from the fevers and pain he has experienced. Prayer and healing are what he needs now. Thanks!

Thursday, July 27, 2006 3:38 PM CDT

Livee is enjoying Adventurland today, her summer program group went up for the day. I can't wait to hear about it. In the morning we will be going to see and hear Lance Armstrong talk at the IMU. Hopefully he will oblige and have a picture or two taken with the kids and maybe and autograph. It should be a big crowd to hear what he has to say about Cancer research and all. Our congressmen and women need to listen and fund childrens research as much as adult research. The only way to cure is through research and the only way to get it is the mighty dollar. I will update after tomorrow sometime.
Thanks for checking in and please say a prayer for our friend Doug, he is in UIHC. He had a stem cell transplant the week after Livee last summer. The family needs prayers for comfort and guidance as they struggle to get Doug healthy again.

Thursday, July 20, 2006 2:20 PM CDT

Hey everyone, just a quick report on Livs. Her white count has recovered and is now 10.9. What a change from 2.6 the 10.9 is in the normal range so no concern on the Docs part. The rest of her numbers were fine too. Livee also went to the dentist appointment this am and all was well there. Life is good, now I must return to work.
Thanks for checking in on us!!

Friday, July 14, 2006 10:39 AM CDT

Life is good, Livee is enjoying her summer. Yesterday she went to Lost Island Waterpark with the kids from her day program. They all had a great time. Today she is going to a movie, doing ceramics, and then the Kernels game. I am so happy for her to finally get to enjoy a summer.
Thanks to all of you for supporting our family and praying for Olivia.

Wednesday, July 12, 2006 12:13 AM CDT

Some good news to report. Steve called from UIHC and reported that Olivia's CD4 number is over 500. Yeah, this means she can stop her dapsone and she is now med free. A milestone indeed we are moving on.
We are to report back for labs on July 20th, I hope to see improvement from the last counts. I think the cough she had was surpressing her white count number. I know she has allergies which we found out when she had her eyes tested a month or so ago. That could also be the culprit.
Anyway, I am so pleased her body seems to be accepting everything and growing like any other 6 1/2 year old.
I have to run I am working. More later.

Sunday, July 9, 2006 8:41 AM CDT

Ok, I feel a little bit better since Friday. I guess I had in my heart that Livee's white count number would be higher so I set myself up. She seems to be acting fine and her energy level is good. Her cough has been somewhat more frequent and she has a raspy voice. They think it's just a virus and I can give her over the counter meds to help. At her day program there have been a couple of the kids that have been sick with the same symptoms. I decided to stay close to home and not expose her to others and try to get her some rest in hopes it will get rid of her symptons. The constant thinking about what is right or wrong, do we do this or that, I guess the best thing to do is listen to my gut and go from there.
Livee has come so far over this last year post transplant, and really has had no lasting issues to speak of. There are so many stories out there and each traveled a different road. No two people are the same and that is definitely the case when it comes to recovery. We send prayers to all of you still climbing the mountain, keep moving on. Each day a gift to be treasured.
I intend to update again soon. Thanks for listening and your constant support.

Friday, July 7, 2006 4:44 PM CDT

It was exactly a year to the day that we were given the news that Olivia had relapsed. So today was a trying day for me, waiting to hear results from her labs. The news is lab results today were fine. However her white count is rather low at 2.6 a drop from last time (normal range is 4-13,000). I wish this number would be a bit higher, the reason could be she has a bit of a cough going on. I honestly hope that is all that's going on. The worry never ends it's always something, I admit today it got the best of me. I have a headache from the stress. They want to see her back on July 20th to follow up. We just want this to behind her and let her move on. Our lives are changed forever and we just have to learn how to live with constant worry. It can be a challenge for all of us at times. We must keep moving forward and remember how well Olivia has done since tranplant nearly a year ago. We are so proud of her, she is such a strong little girl.
We will also know more next week on her CD4 results, if her number is over 400 she will stop the dapsone. I guess it won't be until Fall sometime before they reimmunize her.
I have company waiting for me so I must cut this short. Please continue to pray for Olivia to continue her journey in a positive light and move ahead healthy and happy.

Thursday, July 6, 2006 7:37 AM CDT

Hope you all had a nice 4th of July celebration. We had a relaxing long weekend swimming and hanging around. Olivia saw the Coralville parade and came home with enough candy until Halloween. We have not seen any fireworks yet, we tryed to see the ones in Kalona but the storm came through. We will try for the ones in West Branch sometime in August.

Tomorrow Olivia will have labs at UIHC, we pray for clean results and that her CB4 number is up into the 400 range. I am not sure what it will show. The past couple of days she has had symptons of a cold, let's pray that's all it is. Every little thing can bring the fear right back, I have been praying and praying. Her white count probably will be on the low end since she is fighting this cold thing. Who knows everytime I think I have a handle on this the numbers surprise me. Livee is getting so close to her year out post transplant. Let's just get through the summer as uneventful as possible, boring is good. I want to see her hair grow long and beautiful as before. Of course she will have to do the combing and brushing this time.

I will update as soon as I can tomorrow. Prays for Livee!!!

Friday, June 30, 2006 7:46 AM CDT

Livee enjoyed her last T-ball game last night. It was a beautiful evening for a game. One of our friends (Melissa) from Dance Marathon came to watch Olivia play. Now we are gearing up for a fun long weekend. A little rest and lots of fun are in order. We just need sunshine to go along with. We want to enjoy our pool and be outside as much as possible. I am getting ready for work, lets hope the day goes quick. I must run, have a great weekend everyone!!!
More later and hope to update pictures, that seems to be a chore with my old computer.

Thursday, June 29, 2006 7:59 AM CDT

Quickly, Livee had a great time at the Zoo despite the rain. We pretty much had seen everything before the big storm. We are looking forward to a relaxing weekend. I will add more later.

Friday, June 23, 2006 12:07 AM CDT

Olivia has been having a great time at her summer program. They have a variety of things planned each day. She is taking swim lessons also as part of the program for the next 2 weeks.
We are looking forward to more time in our pool now that the rain is over for. I am sure she will be showing me her new swimming skills.
Tomorrow we go to Blank Zoo in Des Moines, with the Dance Marathon group. Olivia invited a few classmates along. It should be fun for them.
We don't go to UIHC until July 6th, we are happy about that. The more time away from there the better. No offense to anyone.
I am working away so I need to cut this short. Prayers for Cure!!!!

Sunday, June 18, 2006 11:22 AM CDT

Another awesome week at The Heart Connection Camp. Olivia had such a wonderful time. We picked her up on Saturday around 10:30 am, all the campers and staff looked exhausted. We want to send a special thank you to all of you that helped make camp such a success. There are so many people that make this happen. We appreciate each of you for taking the time and effort to help our children fighting cancer. It takes a special person to get involved and take the time to care. I have added a link address for anyone that is interested in making a contribution to The Heart Connection Camp, the funds come from many different wonderful organizations without them it would not happen for these kids.
This week will be back to the daily schedule. Livee is starting at Hoover Elementary for their summer program. She is a little apprehensive but it will be fine once she's there. They have a summer of activities planned.
Thank you all for keeping up with Livees journey, we are moving in the right direction. Olivia is almost 300 days post transplant and seems to be doing great. Our next clinic visit is July 6th, just for lab work. They will be checking her CD4 level to see if we can stop her Dapsone and start her immunizations. It would be nice to eliminate the med. We continue to pray for all of you that must deal with cancer daily. Keep up the fight and never give up hope.

Tuesday, June 13, 2006 7:27 AM CDT

Livee is off to camp, she did great when we had to leave. On the way into Boone we stopped for a bite and happened to see Shelby another little girl dealing with cancer. Livee and Shelby are about the same age, so that really helped with the departure too. Their cabins are right next to each other. I think I packed enough for at least a month, since the weather could not make up its mind. The carnival when we arrived was so nice, the kids were all having fun. We saw so many familiar faces and are happy for that.

The Relay for Life Saturday night was fun, a little chilly but fun none the less. Olivia was mentioned in the Press Citizen article featuring the Relay story. Anytime we can get the word out to help this cause the better. They just have to find a cure too many are stricken with this relentless beast. We need more Survivors in fact everyone should be able to walk the Survivors lap.

I will update as the week progresses, I don't think we will get a phone call to come pick her up. She is having way to much fun and will probably not want to leave when the time comes.

Saturday, June 10, 2006 10:31 AM CDT

Good Saturday morning to everyone-
Livee and I went to UIHC yesterday, all went well. Her appointment was changed to 9:30 instead of 12:45 which was great that way she could eat sooner than later. The anethestiology team came down to the clinic and the spinal was done there instead of up on 5th floor. I have never seen Livee do so well, she was up and ready to walk around in less than 30 minutes. Steve the PA wanted to see her rest a bit longer thinking she would get a headache if she walked around to soon. But Livee was determined to walk around the clinic, she did not want to miss anything I guess. The most important thing is all of her numbers were within normal range. Her white count tends to lay on the low side, I think that must be the normal for her at approx 3.5. Usually 4 - 12,000 is considered normal. They did not check her CD4 count this means she will be on dapsone at least another month until our next clinic visit. They will check that number at that point and hopefully she will be able to stop that and get some immunizations started. So far so good, no infections or anything else (thank you, Lord) we want boring same ole same ole from here on out.

After clinic Livee and I went to pick up her new glasses at the mall and then to Buffalo Wild Wings for lunch. We had a good time. I will miss her while she is having fun at camp this coming week. We take her tomorrow and need to be there by 2pm, the camp if over by Boone. Let's hope the rain subsides a bit so they can enjoy the many activities they have planned. Today we are packing and then going to Relay for Life her in Johnson County. Right now Olivia and Dave are out doing errands and picking up breakfast. The usual for them each weekend.

I will be busy busy this week, going through toys, clothes, and whatever to clear the clutter it takes over in such a short amount of time. Where does it all come from?? I plan to get some much needed excercise too. I think Livs will be ok the whole week, last year she did fine but this year I think she realizes just how far away she will be. I am sure once we get there it will be fine. The first thing is sign in and then the kids go to a carnival, so I would bet it will be see you later Mom and Dad. We are just happy for her to be able to go and enjoy with other kids.

I promise to get new pictures on this page, I have been extremely busy at work and everything else. So that's my excuse. Don't be afraid to send an email to Livee she likes hearing from all of you. As always praying for cure and all of you dealing with cancer.

Tuesday, June 6, 2006 12:06 AM CDT

The speech was successful, I think. Livee stayed here in Iowa City however. That afternoon she had a birthday party and some of the kids played in the neighbors yard afterwards. So I let her stay and be a kid!! All the way to Fairfield I was thinking that was not right for her to not be there with me, but more importantly I think her having fun and doing the things kids should be doing is more important. So I incorperated that into my speed by saying, Olivia is a very independent girl as you can see she is not here with me etc...
This weekend is Relay here in Johnson County and then Sunday Livee is off to camp. Fun, fun, fun.....
Today is her last day of school, she is pretty excited about that. Friday we go to clinic for labs and a spinal. We pray all is well, if her CD4 count is up over 400 she will be done with her med and they will schedule immunizations. A huge step in the right direction, she is almost 10 post transplant. We are so happy for her to be healthy and happy. God willing we continue in this direction for years to come.
I must run at work as usual. Thanks to everyone for your support. It was great seeing some of you at Relay in Fairfield. A special thank also to Teresa Baker she did an awesome job coordinating the event.

Friday, June 2, 2006 7:52 AM CDT

Another busy weekend ahead. I am preparing my talk for Saturday night at the Relay for Life in Fairfield. I am looking forward to seeing some of you there. Before we head that direction Livee has another birthday party that ends at 3pm. Dave is going to be setting up the pool for the summer and also working. I was going to have today off from work but we are just to busy, so maybe will leave at noon. I have so many things to get done and just not enough time in the day.
Today at school Livee has a picnic at Mercer Park, fun fun for all of them. I am sure she will point out our house and talk talk as they walk to the park. She seems to be adapting fine at school and will move on to the 2nd grade.
Hope you all have a great day, I must run for now.
As always remember those fighting the beast, pray for cure!

Tuesday, May 30, 2006 7:50 AM CDT

Back to reality, right?
We had a wonderful weekend. My niece graduated from high school so we had her party to attend. It was great seeing everyone, my three brothers and their families we all there. We also visited my Aunt Edythe, she is getting along fine after the recent loss of her husband Jack. They would have been married 50 years on June 3rd.
Olivia is doing fine, she is pretty tired after the weekends activities. She went to a birthday party Saturday and then hung out with her cousin Tori. We head back down to Fairfield this weekend for the Relay for Life, I will be speaking before the Survivor lap around 8pm Saturday. If anyone would like to stop out that would be great.
I am starting work now so I must cut short. Keep praying for "Cure" and maybe someday cancer will be a thing of the past. How awesome it would be.

Thursday, May 25, 2006 7:53 AM CDT

Thanks to all of you that continue to follow Olivia's journey. We are so thankful that all is going real well for Olivia. Our next appointment will be June 9th. At that time she will have a spinal and labs of course. They will check again to see if her CD4 level is in the 400 range, if so then she will be off the only med she takes and she will start to receive her immunizations. Right now her level is approx 321 so we are getting there, the rest of her numbers are in the normal range.
A funny little story, yesterday Livee's bedroom door locked when we closed it. I could not get the darn thing open and could not find the only key for it. So Livs slept on the couch last night and then this morning Dave pryed the door open. Good thing clean laundry was done and we could pick her outfit for today. Ok it's not that funny!!!
I am extremley busy with work training employees and working on projects. Must go.

Wednesday, May 24, 2006 7:48 AM CDT

Livee had her 3rd ball game last night. She has a lot of fun with the other girls. They either use the T to bat off of or a pitcher. I love watching all of them some of course know what they are doing and the rest just do the best they can. Fun, Fun, Fun for them.
We are looking forward to the 3 day weekend, no real plans but hopefully a little R & R for everyone.
I am extremely busy at work so I need to close for now but of course will add more later.

Tuesday, May 23, 2006 7:54 AM CDT

Livee is counting the days until the end of school. We are looking forward to enjoying a summer of freedom and fun. An uneventful lazy summer is what we are hoping for.

As the Relay for Life approaches I have been thinking about what I will say for the survivor speech. My Aunt Edith is also a cancer survivor and will be there with us. Right now I am thinking about her and saying a prayer to help her through this time. Her husband Jack passed away yesterday after battling diabetes. We send love and prayers to Edith as she starts her new journey and moves forward.

I also send thoughts and prayers to families fighting this ugly beast we know as cancer.

Monday, May 22, 2006 7:39 AM CDT

Livee had her first dance program yesterday. It was awesome to see her up on stage with all of the kids. The show was really nice, it was held in Mt Vernon at Kimmel Theatre. My parents were able to attend so it was a pretty special day.
Also we saw Kathy Whiteside from Child Life at UIHC, so that was another nice surprise.
Now we can focus on Liv's last days of school for this year, a short but productive 1st grade career. She will go on to 2nd grade for sure. After some thought and consideration I think that would be the best option for her to move on to 2nd grade. Socially she is catching up and all the rest is falling into place, she will just be one of the younger ones for her class. Her reading level is beyond 1st grade and writing is coming along too.
I am preparing a speech for the Relay for Life in Fairfield to be held June 2 & 3. I will be talking before the survivor lap. Any of you in the area please stop by it would be great to see everyone and to support the cause.
I need to run for now but will for sure update soon. Also I promise updated pictures.

Monday, May 15, 2006 2:17 PM CDT

This week we are the Star Family for Livee's class. She had to write a story and make a picture board to show her classmates. We will call her story a short story. She lost interest and made it short.
Livee is doing great, the results from her labs like I mentioned were fine the report on her immune system still shows she is a bit low numbers are approx 320 should be around 400. So for now she will stay on her med and then when she has her spinal on June 9th they will check it again.
Hope Mother's Day was good for all of you.
Need to run I am working..More later....

Sunday, May 14, 2006 12:52 AM CDT

HAPPY MOTHERS DAY!!!
Especially those that have a child dealing with cancer....
A special heartfelt hug to you. You know very well the true meaning of being a Mom.
Each day a blessing, a gift to treasure, our children so special. Pray for those dealing with a loss and for those that continue their fight. Cancer does not care what day it is and there are always reminders of how evil it can be.
Pray for Cure!!!!!!!

Thursday, May 11, 2006 12:13 AM CDT

Livee had labs this morning and I am happy to announce all is well. The numbers are all within the normal ranges. We will know probably tomorrow approximately where her immune system is in terms of normal range. There was only one component the last time that the range was somewhat low. Don't recall something with the lymphocytes I believe, anyway if the results this time show that number up and normal Livee will not have to take the Dapsone each night. Also she will start to get immunized again. Not fun for her but necessary.
Last night she had dance with full costume, make-up, and hair. They all looked so cute, the big event is May 21st. She could not wear her glasses last night or won't during the big event. She seemed fine without them.
Chocolate Livee's dog looks like a new puppy, she had her nails and hair cut this morning. She needed it, she was a mess. I am working and need to close for now. More when I know more.

Tuesday, May 9, 2006 12:16 AM CDT

We had a wonderful weekend having fun and enjoying the weather. Livee attended a birthday party Saturday night, a pizza party with the neighbor and some school friends. She continues to do well and stay healthy. Praise God !!!!!
We are gearing up for her Dance performance May 21st. Her summer will start with one week at The Heart Connection Camp by Boone then she starts at Hoover school summer program. I think it will be great for her. They swim, partake in field trips here and there and have activities all day. I think I should go sounds much better than working.
This Friday night her school (Lucas) is having their Fun Night. As usual thank you for checking in and supporting Livee.
Keep those in mind that continue to fight cancer and all of its evil ways. Prayer and research to find a Cure!!!

The Relay for Life is just around the corner here in Johnson County and several other communities, I am speaking at the Jefferson County Relay on June 3rd during the survivor ceremony.

I will update after Livee's labs Thursday.

Friday, May 5, 2006 7:50 AM CDT

Just a quick Hello!!!
Livee is doing fine, so far so good!!!! Yee Haw!!! Her school has had some illness here and there but she has been fine. They are really good about informing us of any children being sick or that type of thing.
Livs seems to be adjusting to school and the routine, although homework is not her favorite thing. I have entertained the idea of keeping her in the 1st grade for next year too just to help her confidence level and maturity. I will be discussing it with her teacher to see what she thinks. It could work either way either build her confidence or deter it since she would not move on with the rest of her class?? She reads and writes fine but it is more of the social skills and adjusting, we will see.
She loves t-ball much better than dance, we are getting ready for the big event May 21st. It should be fun for her to dress up and be a girly girl.
I have to run, I must start work now.
Thanks for checking in, I will update for sure after Livs appointment May 11th (just labs).

Monday, May 1, 2006 7:40 AM CDT

I can't believe it has been one week since an update. We have been rather busy I guess.
Olivia started t-ball last week practices are Tuesdays and Thursdays then on Wednesdays she has dance. That will be over soon, the reciptal is going to be May 21st. I can't believe what a production they make of this. These girls are only 5 & 6 you would think they were trying out for Joffrey Ballet, kind of silly. They expect hair, make-up, no glasses during the performance. A bit overboard for this age. Anyway Livs will partake in this performance and then we will see.
Yesterday Livee and a few of her friends were at Planet-X in Cedar Rapids compliments of Dance Marathon. They had a great time, and the best part is we now have a purple alien at our house. Who could ask for anything more?? Thanks to all of the wonderful group of Dancers, they all joined in with the kids and played with them along with handing out some extra tokens etc... They are the best.
So this week is busy again, this work stuff just gets in the way.
Please keep Doug and his family in your prayers, they are home where they belong. We are all thankful for that. All of the many prayers mean so much.
I will update soon.

Monday, April 24, 2006 7:32 AM CDT

Happy Monday, is that an oximoran? Anyway Livee is doing fine. We have been so busy that sometimes I just don't have time to update.
School seems to be going well for Livs, although sometimes she says it is boring. She is still figuring out everything and where she fits into the mix. She said she wants to play T-ball but when she found out it would be all girls she was not so sure anymore? It starts Tuesday evening so we are going and then she can decide, she was on a team last year with mostly boys. I am trying to get her involved with some girl interaction, she tends to gravitate towards the boys. Livee has mostly been around boys either at Patti's or at the neighbors and at the hospital. This upcoming weekend she will be going to Planet X in Cedar Rapids compliments of Dance Marathon, I told her to invite some school friends. Livee is still taking dance lessons on Wednesday nights, her reciptal is late May then I am not sure if she will continue. I think it moves to slow for her, she likes more of the Hip Hop style dancing.
We visited my parents over the weekend so Livs played with her cousing Tori. It had been a while since they had seen one another. I am at work, trying to get ready for the day. I think I have Spring fever, I have so much to do at home but find myself hanging out doing things with Livee instead. My priorities have changed a good thing but also an excuse to blow off the chores.
Please continue to say a prayer for Doug as they struggle through dealing with his cancer. They are looking at clinical trials at Mayo or St Judes, we wish them the best and hope they find some answers.

Wednesday, April 19, 2006 7:56 AM CDT

Hi everyone!!
We are hanging in there, Olivia is doing great. She is quite the little lady and then sometimes not. Just about every morning she chooses her outfit based on different criteria. You would think she was going to prom or something. I have tryed to have her pick out her clothes the night before but she always changes her mind. Typical woman huh?
Please continue praying for Doug and his family. They need support and comfort. Let's cure this beast somehow.

Monday, April 17, 2006 9:46 PM CDT

Olivia picked out the background for her friend Doug Ruley!

Please pray for Doug, they just found out today that his cancer has come back again. He is such a strong, brave, little boy that will have yet another fight on his hands. We are sending prayers of comfort for them.

Monday, April 17, 2006 2:11 PM CDT

Hoping you all had a nice Easter!!
We had a wonderful time at Grand Harbor in Dubuque. Olivia just loved it. She was so excited to jump in, and it was great to see her have a good time, carefree. We saw some of Olivia's buddies from Patti's, her friend Jace was there with his parents. That was nice to them and Livee had a playmate. They had an easter egg hunt and other activities for the kids. I decided it's time to get serious here and lose some pounds. Wow, that swimsuit sure looks different then it used to. Maybe now that we are on the right track I can focus on some excercising. It would feel so good to get back into it.
I have to run I am working now. I am still overjoyed with out positive news on Friday. Livee deserves to be a kid and enjoy.

Friday, April 14, 2006 8:06 PM CDT

A moment to say all test results were good. Livee had a spinal/marrow along with labs and all checked out to be fine. Thank you God!!!!!!!!
We could not believe the destruction and devestation on our way to UIHC after the storm last night. Wow, one of Livee's favorite spots is completely gone (Dairy Queen) on Riverside Dr was wiped out. I told her next time we go to that DQ it will be brand new. We are so thankful that with all of the damage just a few injuries, it could have been much worse. We brought in some hail the size of golf balls and put them in the freezer.
Tomorrow we will be headed to Dubuque for the Grand Harbor Resort, Livee will have so much fun. We can all relax and enjoy our time. The Easter Bunny will probably find us, I think.
We wish a happy and safe Holiday weekend for everyone. We appreciate you keeping up with Livees page and your loyality. So many prayers have been answered. Happy Easter!!

Wednesday, April 12, 2006 7:57 AM CDT

Livee changed the web page on her own, so for now it's back to the ole standby. A 6 year old knows more then I do about computers. Anyway, one of these days I will take time to sit down and revamp the page again. I am working so I need to run for now. Thanks for checking in and praying for only good this Friday. More later.

Tuesday, April 11, 2006 2:19 PM CDT

Hey everyone, I am trying to gear up for Livee's appointment on Friday. We have to be there around 9:30 or so. Last night she slept from 7:30 until this am. She was so tired from the busy weekend. I will have to add more later. I am at work and running late.

Monday, April 10, 2006 12:27 AM CDT

Real quick, Livee is doing great. We really enjoyed our weekend with Dave's brother and family. Check out the pictures, and there will be more to come. Livs was very tired this morning and a little cranky. So early to bed tonight right? She does have a cough that lingers, we have been outside a lot so I am sure that could be part of the cause. ( I hope ) We will be going in this Friday for a spinal/marrow. I am worried as usual until I know for sure all is well.
I will add more later, I am working and must go. Thanks for the support.

Tuesday, April 4, 2006 8:37 PM CDT

Just a quick message, good news today from Peds Cardiology. Everything looks great from the surgery 1 year ago, the device they implanted to fill the hole in Livee's heart is fine with no leaks. This is what you want to hear, so we are done with at least one chapter. They won't need to see her again, Yipee!!!! Now we just need only good news with Livee's upcoming spinal/marrow on April 14th. We have a weekend with company and will not even think about it. Last night Olivia fell asleep on the couch around 8pm and she actually slept until this morning. She needed to catch up I think, she plays so hard at school and after. Anyway that is all the info for now. More to follow.
As always, thanks for checking in on Livee.

Sunday, April 2, 2006 8:06 PM CDT

Friday night Olivia had her first school program. It was short and sweet. I could hardly hold back the tears, just to see her up there with all of the other children. She has progressed so much since all of this began. I pray for many more moments and memories like Friday night. Sometimes I have to stop and take a look around to make sure I am really there. All of this is so new to us and we are trying to adjust to just being a regular ole normal family.
School is going fine overall I think however,
Livee has commented a couple of times that some of the kids at school think she is a boy. I know it bothers her, so we talked it over and the conclusion is most people just don't pay attention like they should. It has happened several times in the last few months someone will say him instead of her.

This coming week we are getting ready for Dave's brother and family to arrive from South Carolina. We will be seeing them next weekend, it has been 1 1/2 since we have seen them. It should be fun, and hopefully the weather will cooperate.

Tuesday Livee has a follow up from her heart surgery a year ago. We go to peds cardiology they will do an echocardiogram and that might be all. I will update then. April 14th will be Olivia's spinal/marrow procedure, I am trying not to think about it.

Wednesday, March 29, 2006 12:23 AM CST

Olivia is doing fine. She is having a little trouble adjusting to a schedule. I know she likes school but says in the mornings that she does not want to go. I am not sure what the underlying reason is? She is so used to being around adults and mature conversations. Who knows she is probably still testing me. She will go to dance tonight, we have missed 3 weeks now due to Spring Break and her not feeling well 2 times. They have their performance sometime in May.
I am working so I must cut this short. I will add more later.

Sunday, March 26, 2006 7:19 PM CST

Livee has recovered nicely from her day last Wednesday. She occasionally coughs and blows her nose but otherwise is good to go. How nice to have an ordinary kid type bug that is here and gone and that was that. Wow, we have come a long way. The scare and fear still remain and always will. We hope to make this a full week at school for Livs. She seems to be getting along fine and liking her school days, however she has said she does not like it and so forth. I think she is just testing the waters with me. Of course having a day with Grandma is much more fun then school, right? anytime you can be spoiled all day with 100% attention why not. Anyway we look forward to a great week.
Thanks for the many prayers and thoughts.

Wednesday, March 22, 2006 6:34 PM CST

Ok after a more than worrisome morning I can breath again. Olivia woke up with a fever of just over 101 then it jumped to 102 then 103. I was completely freaked out and of course naturally thinking the worst but trying not to. They worked us in at UIHC clinic around 8:30 pryor to that they allowed me to give her some Tylenol. They found her nose, ears, & throat to be fine, however she had a nasal wash (yuk) and blood drawn, the conclusion thus far is she has a virus of some sort. Who hasn't heard that before, anyway her numbers were fine. The white count jumped now to 9.3 and her neutrophils (the good fighter guys) are 7487. That's good this means her body is doing what it should in fighting whatever this bug is. So after losing it momentarily there was a silver lining. Her immune system is getting better according to lab results from last week. Just a couple of the results showed below normal ( don't ask which ones I can't remember) but T-cells and B-cells were normal range. Livee of course stayed home from school and will tomorrow also. So we did manage 2 full days and hopefully Friday. My Mother saved the day for me, so I could go to work this afternoon. What would I do without her?
Livee seems to be doing much better and shows no real signs except for an occassional cough. That is how it started last night, during the night she coughed some and it sounded like it hurt her throat. Then you know the rest. This time of year we can expect colds etc... I just thought maybe we would skate by without. I need to close for now but I wanted to update. Thanks for listening.

Monday, March 20, 2006 7:47 AM CST

Today is Olivia's first official day of school. She was rather excited and ready to go. She had a bit of a sniffle this morning but hopefully that will subside. I requested that she stay in for recess since it is windy.
We had a great weekend, Grandma spent the day with us on Saturday. We ventured to Urbandale for a photo shoot. Olivia will be one of the featured children for the Leukemia & Lymphoma Society calendar 2007. I will be selling those later this year. They are rather nice calendars.
Not much going on, I am still adjusting to working and being away from Olivia. I miss her when we are not together. I must admit fear has been getting the best of me lately, I don't really know why. Reality sinks in pretty hard sometimes and it can be difficult to stay focused on the positive. I realize Olivia has come a long way and is a very courageous young lady. We are so proud of her and praise God each day.

I will update when I hear more about her lab results. RE: Immune System Functions.

Thursday, March 16, 2006 4:48 PM CST

Today has been a busy day for Olivia. We went over to clinic around 8:00. They did a complete blood draw so they can check the lymphocytes and get an idea of where her immune system is in terms of fighting any infections etc... We won't know the results for a few days, otherwise her numbers were pretty good. A little concerning to me though is her white count is back to 3.3 (3300)a bit lower than the normal range of 4 (4000). I guess it is better to be low then high on her white count. The thing is this could be for any number of reasons, on any given day any persons count could be high or low. Of course I am trying to stay positive, but it is somewhat of a concern. Each time lab work is done there is a certain fear that just never goes away. No matter how hard you try, reality is there. As one Doctor said we are not out of the woods yet, (like I needed to be reminded) anyway they have to keep things in perspective I guess.
After being at UIHC Livee had a dental appointment. The last of three and hopefully for a while. She was pretty tuckered out and did not feel the best so we ended up staying home for the day. I don't want her to be run down and get sick. She did have a 2 hour nap, so it was probably best for her. I just don't like missing work so soon after just returning. I keep Livee my priority but do need my job.
Livee will be back at Patti's tomorrow and then in school on Monday. She can't wait, I just hope not to many kids are sick and stay home if they are. I may have her wear a mask, it is just scary knowing all of the germs that are out there. I can't keep her in a bubble though. Once the test results come back I will have a clearer picture of what's really going on with her immune system.
I need to scoot for now but will update soon.

Sunday, March 12, 2006 8:49 AM CST

Not much happening here. That of course can be a good thing.
Olivia is sleeping right now, I need to wake her soon. I am sure her body needs the rest.
She seems to be doing fine at school. She talks about her new friends and all that they do in a day. It seems so weird to have her going to school. A very good thing indeed! Friday they called me to say she had a bit of nose bleed. I think she just bumped her nose and it was dry so it bled just a little. I was glad they called me to inform me. The people at Lucas school have done a wonderful job of watching out for Livee. It is such a relief to know that she is ok. Not a moment goes by that I don't think about her and what she has gone through. The fear never goes away but does subside at times.
We go back to UIHC this Thursday for labs. I believe they will do a full CBC, they will check out her immune system and see how it has progressed. The last time they checked it out she was approx. 50% normal range. So since time has passed we hope her immune system is closer to 100%. She is 7 months post transplant now. I thank God every day for Olivia and that she continues to progress.
I have no idea where Olivia's counts are right now. It has been a while. She has not been on any meds and we really never knew if she had any GVHD (graft versus host disease). I think she did have some earlier with her foot rash, but we really don't know. Anyway she seems fine and for that we are very thankful.
Thanks for listening and I will add more later.

Friday, March 10, 2006 7:53 AM CST

Olivia is loving school and all of her new friends. Today she is going the whole day. Patti's daughter is ill so Livee will be at school instead of Patti's. Other good news for me anyway, I found my cell phone. It has been missing for 2 weeks, this morning Livs was putting on this favorite pair of shoes and there it was. Yeah!!!!!

Please keep the Reed family in your prayers during this time of Kyles passing. We pray for comfort and peace for their family.

As always thank you everyone for following Olivia's journey and the support. It means the world to us.

Wednesday, March 8, 2006 6:41 PM CST

We celebrated Dave's birthday yesterday. Livee and I gave him pictures of her and some PS2 games. He is pretty special to us. Livee and Dave share such a special gift with each other and something so totally unique, the gift of life. How awesome for them to have that bond forever.

Olivia is exhausted from her 1st half day at school. She is already sleeping on the couch. I knew she was tired when we got home she was somewhat cranky and did not want to go to dance. I let her skip this time, I don't want her to get to run down. I did meet her at Lucas this morning before she started her day. The first thing on the agenda was lunch. She fit right in, you would never know it was her first day. I know she was anxious and excited about the whole thing. She did fine and is looking forward to tomorrow. Finally a chance for her to be one of the group and just be Livee. A truely wonderful experience for us, considering what she has been through in the last 2 years.

A special thank you to Patti, Michelle, and Dory. Without these three exceptional people this road would have been much more difficult and we would not have come this far.
As the song says there are Angels among us.

Monday, March 6, 2006 6:28 PM CST

We are hanging in there. Olivia is somewhat anxious about starting school on Wednesday. The unknown can be scary but she will be just fine. She will only be going in the afternoons this week and will start full time on March 20th. Spring break is the 13th through the 17th so she will be at Patti's that week. I can't believe we have finally reached this milestone, seems silly to be so excited about this but for us it means much more then most. I pray constantly for Livee to keep moving forward and get to reach even more milestones.

So many families are touched by cancer, it does not care who it hurts or how often it shows its ugly self. The cancer is difficult enough to deal with but some of the lasting effects are just as painful. A reminder of this rotten disease. We pray for each and everyone of you that have been through this and are still dealing with it. Special prayers need to be sent to Kyle Reed and his family they need support and comfort during this difficult time.

Thank you all for sticking with us and supporting Olivia and our family.

Saturday, March 4, 2006 6:18 PM CST

Hello to everyone, sorry for the delay in updating.
We have been very busy getting back into the swing of things. I worked at our Cedar Rapids location most of Tuesday, Wednesday, and then Thursday. An unexpected work situation but it worked out ok. Livee has been enjoying her days at Patti's although some of the kids are new since she had been there and she is the oldest. She will go this coming week all day Monday & Tuesday and then mornings the rest of the week, the afternoons she will be at school. As long as everyone stays healthy with no bugs we should be ok to proceed forward. It sure has been nice to be away from UIHC. We don't go back until the 16th, just for labs. Yahoo!!! I constantly worry about her and pray we continue to recover and move forward in good health. The fear can totally consume you if you let it. We are so proud of Livee and treasure every waking moment with her.

Today we watched some soccer at the U of I practice dome. A cousin of mine from Milwaukee played. We did get to visit with family from here and there. The days just are not long enough to fit everything in sometimes.

I intend to update pictures at some point, I know I know I said that before. Somehow my cell phone has come up missing, we think it is somewhere in the house but have looked everywhere. Livee was playing secretary with it last Sunday so we are fairly certain it is here somewhere. Very frustating though, I have called it but I am not available. So I don't know yet what I will do. I would know if anyone uses it because I don't very often and I also know the last person I called. Anyway what did we ever do without the silly things before?? I need to run and will add more later. Livee is Liveestrong!!!!!

Monday, February 27, 2006 6:47 PM CST

Livee and I survived the 1st day back into the real world. She enjoyed hanging out with Patti and the kids. She also had school this morning and said she liked having Dory there. It seemed so weird to not be with Livs all day. Work is not near as much fun. I got along fine but it will take an adjustment period to really get back into things. With the exception of approx 2 1/2 weeks I had not been to work since July 7th, 2005. On one hand it seems so long ago and then again just like yesterday when we given the devestating news of the Cancer returning.

In fact tomorrow will be 2 years to the day that we started the roller coaster ride from Hell. A day we will never forget but try not to remember. Our precious baby having an evil monster attack her from nowhere. Just think how far Olivia has come since then, one step at a time and still forging a head with determination, courage, and spirit. We just love her, love her, love her. From day one she has inspired me and continues everyday. How dare any of us complain about how bad this was or how unfair that was etc... etc...these kids that deal with cancer are so brave and deserve to be treated like royality. I am so proud of all of them for being such true heroes.

Sunday, February 26, 2006 4:21 PM CST

Olivia is looking forward to going to Patti's tomorrow. Patti said she has a couple of chores for her, so I told Livs looks we both have to go to work. She will have a great time being Patti's helper. She knows some of the kids there now and over Spring break will see some of her ole pals. Today we have been hanging out enjoying the day. Livees bath is already done and I hope to get her to bed at a decent time. Yeah right, anyone that knows Livs knows she is a night owl. I think it will all change though she will hopefully be worn out from her daily activities.

In April Dave's brother Dwight and family will be visiting from South Carolina. We have not seen them since October 2004. We are excited for Olivia to see her cousins Matthew and Morgan. Matthew just turned 6 so we better look out when those two get together. It should be a great time for everyone.
We are all looking forward to getting back to routine business. Mostly for Olivia to be the sweet, funny, spirited little 6 year old girl that she deserves to be.
Thanks as always for the many prayers and continued support from each of you.

Saturday, February 25, 2006 12:02 AM CST

Livee and are just hanging out today. Yesterday we went to Patti's with Dory (Livs teacher) so they could meet. Dory will be teaching Livee at Patti's for the next 3 weeks. Olivia is pretty excited about going back to Patti's and being the big kid. It will be great for her to be in her comfort zone before starting school.
Also yesterday Livee and I went to Coral Ridge Mall for errands and to have her picture taken. She rode the Carousel, ate ice cream, and played in the play area. I of course had my eagle eyes open for coughing kids etc... and Purell in hand. She is getting along just fine and full of life.
I need to cut this short for now, my last weekend of freedom and then back to work Monday. Yuke, just a bit of an adjustment for me. We will see how it goes. For now I just want to treasure the time with my favorite girl.

Monday, February 20, 2006 5:22 PM CST

Olivia and I ventured to my parents on Friday and just returned this afternoon. Just a bit on the cold side. We watched Olivia's cousin Tori play basketball on Saturday. Those two played games, the piano, and watched movies all weekend. Livee loves the piano, she knows a couple of songs and plays them frequently when at Grandmas. She does have a keyboard here at home but really enjoys the real thing. Someday we will have that piano here. My Mom has played for many years and still enjoys it.
This is my last week of freedom and then back to work next week. Yikes, I guess winning that lottery wasn't meant to be right now. It will take some adjusting I know. It is time to move forward and start our lives again. It has been much to long being out of the loop and some sort of regular schedule. We aren't due back to UIHC until March 16th, hallelujah. Livee is doing great, and for that we count our blessings everyday.

Thursday, February 16, 2006 12:39 AM CST

We made it to clinic and back just fine. The best news is Olivia's white count is back up to 4 (4000). So her immune system must be working right since she had her cold and has now bounced back. Let's pray that this all continues moving in the right direction. We are so fortunate that Livee has avoided any complications since transplant. She deserves to just be a kid and forget that Cancer stuff.

It was nice seeing some of our hospital families today. As always our prayers continue for all of these kids and their families. We will update sometime soon.

Wednesday, February 15, 2006 3:55 PM CST

Olivia had a wonderful time at her school Valentine Party. She just fit right in, chattering with the kids and having a great time. She had a tour to see where everything is located. Now we just have to wait to officially start. For now I will enjoy each day with her and have fun. I really do need to get back to work even though I would rather not.
Maybe I could win the lottery, I have to play first.

Like I had mentioned we go to clinic tomorrow early am. Then we are free to do whatever, we may visit my parents depending on the weather. It would be a good time to go see them since Olivia won't have school Friday or Monday. We will see what transpires. Her cold seems to have subsided with just an occasional cough now. She has dance lessons tonight, she had to miss last week. She seems to like it so far. They will have recital in May sometime. More later.

Tuesday, February 14, 2006 11:32 AM CST

Let's see where did I leave off. Livee's cold is so much better, just an occasional cough. This is a great sign, it means her body can fight off a minor infection on its own. Yippee!!! Also Steve called from UIHC to confirm final results showed everything to be fine from Livs spinal. Another Yippee!!!
The biggest news of all, Livee lost her other top front tooth last night. She looks so cute being toothless. We are going to her school today for a Valentine party. This will be an opportunity for her to meet some of her classmates and have some fun. I plan to take pictures for the big event. This is probably more exciting for me then her. I am just so thankful to be where we are.
We go this Thursday just for labs which we hope to see an improvement on that white count. I will update then.

Sunday, February 12, 2006 2:42 PM CST

Olivia has a full blown cold, lots of coughing, watery eyes with a runny nose. She is doing ok we are keeping her hydrated and laying low. Good thing for Playstation 2, in this circumstance. We will go in on Thursday for them to check her numbers unless her cold gets worse then we will go sooner of course. This is the first real cold she has ever had. I guess her body must experience this cold to help rebuild her immune system, it has to happen some time. Who would think that a common cold could cause so much worry. Probably only a Cancer parent I'm sure. Damn Cancer, always getting in the way.
We refuse to give in or give up, each day is one day further out from tranplant. Olivia is now 6 months post transplant, and we are overjoyed. We are so ready for Spring and her to start school. Mostly in preperation for a fun Summer.
Thanks for sending prayers and support for Livee. Any family dealing with this can tell you it means the world to hear from each and every one of you.

Saturday, February 11, 2006 12:36 AM CST

Sorry about being slow to update from yesterdays report on Olivia. Please check out the new photos.
The spinal preliminary results were fine, just a few white cells there which is considered normal. The results from her lab work was somewhat concerning, her white count has dropped to 2 from 4.2 this happens as her new immune system is still figure everything out. She has been coughing and starting to get a cold this can also bring the white count down. Right now they want us back for labs next week. We hope to see improvement then. I try so hard to think positive and keep moving ahead. The fear of the unthinkable just never goes away. On the other hand getting this cold can be a test for her system to see that it is functioning normally and fight this off with a little time.
Otherwise Livee is doing fine and having fun. We might be going to Olivia's school on Tuesday for a Valentine Party. We will have to see how she is doing then and I hope to feel better too. I have a touch of something, but not the coughing like Livs. I guess it is inevitable to get sick at some point. I have not been sick for a long time, it is so important for me to stay healthy for Livee. I think Dance Marathon probably was to much exposure and lack of sleep. The most important thing was having fun, right?

Wednesday, February 8, 2006 2:06 PM CST

Livee has aquired a cough, I am sure she is just run down a bit from her busy weekend. Livee has been busy with the Playstation 2 her Dad bought for Christmas. It turns out to be one of Livs favorite things to do. She really gets into it. I try to limit the amount of time she plays, although Dr. Radhi did say playing those types of games can be therapy for her brain since she had radiation. Also on that note, Olivia had an evaluation on Monday to see where she is as far as reading and other aspects of school. The results are pretty much indicating that 1st grade is the right place for her. Her school start date is March 20th, we are so excited about this. Also Livee will start going back to Patti's the end of this month until she starts school. Thank you Patti for always being there for us. It will be great, Livs can get back into a routine and into her comfort zone. A good transition I think for her. I start back to work on February 27th. I think it might be a while before I get back into my comfort zone. I have really enjoyed hanging out with Olivia. But the bills don't stop and I have not played the lottery.

We go in Friday around 10:30 am to the clinic and then she will go up to the OR for her spinal. Hopefully this will be the last one for approx. 3 months or so. She will have treatment on Friday too. We pray for only good normal results. I dread each time she has a procedure, the anticipation is too much. I just keep the Faith and move forward.

I have a meeting now at Lucas School with Olivia's teacher, the principal, and the school nurse. We are going over some information about Olivia that they need to know. Communication is the best tool and to educate as much as possible. I better get a move on. Thanks to everyone for hanging in there with us and following Livee's web page. It really helps us to know we have such a great support system.

Sunday, February 5, 2006 1:07 PM CST

WOW!!!!! WHAT AN AWESOME EVENT DANCE MARATHON 2006 !!!!!!

A HUGE THANK YOU TO ALL OF THE DANCERS AND ORGANIZERS, OVER
$687,000 RAISED A NEW DANCE MARATHON RECORD. THAT IS UNBELIEVABLE, YOU CAN ALL BE VERY PROUD OF WHAT YOU ACCOMPLISHED.

LIVEE WOULD LIKE TO SEND A SPECIAL HUG TO MORALE GROUP #29.
YOU ARE THE BEST, AND THANKS FOR HELPING MAKE LIVEE'S 2nd MARATHON SO FUN. THE T-SHIRTS WERE AWESOME WE HAD MANY COMPLIMENTS ON THEM. (GREAT JOB!!) I CAN'T WAIT TO SEE ALL OF THE PICTURES. DID ANY OF YOU HAPPEN TO GET A SHOT OF WHEN OUR FAMILY WAS ON STAGE FRIDAY NIGHT? IF SO PLEASE CONTACT ME, WE DID NOT GET ONE AND WOULD REALLY LIKE ONE.

Livee had such a great time, getting to hang out with all of her hospital friends. Sleep was not in the plan, she stayed up until 2am Friday night and then kept going until 11pm Saturday night. Needless to say she slept in this morning.

We will continue to pray for all families that continue to battle this demon we know as cancer. Never give up and treasure each moment make the most of every day.

Friday, February 3, 2006 1:46 PM CST

GET READY TO SHAKE YOUR TAILFEATHERS!!!!!!

SEE YOU ALL AT THE BIG DANCE TONIGHT.

DANCE STRONG
BE STRONG
LIVEE STRONG

Thursday, February 2, 2006 6:46 PM CST

Livee and I were on Mix 96.5 around 12:20 today. It went pretty well I think. You have no idea what they are going to ask you. There is so much to say but so little time you try to condense everything. I was glad Olivia could be there with me to help me along. She did say Hi to all of the listeners. This is their last push to bring up fund raising numbers for Dance Marathon. The radiothon will be held tomorrow too.
The Dance Marathon events start at 7pm tomorrow night. First all of the families are introduced individually and then all go up on stage. Then the big dance begins. It should be fun fun!!!! I plan on taking pictures so maybe like I promised I will update with new photos.
At 11pm our family will be on stage. Dave is going to talk this time. He will have a chance to tell his story and how proud he is of his daughter. Livee said she would talk hopefully she will. Usually once you get her going she is quite the story teller. I wish everyone could get to know her better.
At some point Dave and I plan a huge celebration for Livee!! So when that happens it will be a chance for more of you to get to know her. Get ready Dancers and we will see you tomorrow night.

Wednesday, February 1, 2006 9:36 PM CST

We are approaching the 12th annual Dance Marathon and looking forward to having fun. We want to thank all of you from Group #29 for your support of Olivia and our family. We appreciate all of your efforts and persistent hard work toward this wonderful cause. So many families are touched by Cancer every day. The smallest of gestures can mean so much for a family going through this. You may not even have realized that you helped out, but because of you that child, that parent's life was a little easier if just for a moment.
I am trying to warm Livee up to the idea of being on the radio. We will see how it goes. I think our time is 12:15 or so tomorrow on Mix 96.5 FM. I usually just wing it because you really don't know what they are going to ask you. If our story can help in anyway we have prevailed. Awareness and raising money for cure that's what the radiothon is all about.
Please include in your prayers all of the many families dealing with Cancer. Take care and God Bless!!!

Sunday, January 29, 2006 1:53 PM CST

Big News Flash!!!
Livee's now has one less tooth. Thursday night her top left tooth was on it's way to see the tooth fairy. However Olivia wrote a note to ask the tooth fairy if she could please keep her tooth to show her friends and family.

This next weekend is the 12th annual Dance Marathon!!!! The kids love it along with all involved. This Thursday and Friday in conjuction with the DM a radiothon is being held to support the cause. We will be talking on MIX 96.5 @ 12:15 approx. I hope Olivia talks for them. The other stations involved are KKRQ 100.7 & WMT (AM) 600. This is a great opportunity for families to share their stories and support each other while raising money and awareness about childhood cancer. Please take a listen when you can.

One of these days I plan to update the photos. I can't do it using my computer right now, so that's my excuse. More real soon.

Thursday, January 26, 2006 4:14 PM CST

Livee and are having a great day. We spent the entire morning at UIHC,yes that is right. Olivia's lab results were great the best numbers we have seen since transplant. That is why we are having a great day. Her white count was 4.2 a increase and within the normal range, all of her other numbers were great too. The reason so long at UIHC because Olivia wanted to go visit the Bone Marrow Unit and see some of her friends. She played and played with another little guy w know Chance. They had a great time the interaction is great for both of them. He is doing much better and will possibly be going home by weeks end. It is so nice to hear about good news for a change.

I am preparing information for Livee to go to school. Sort of getting my ducks in a row. We are pretty excited as each day is one step closer for her to finally be in grade school.
She needs something so I will cut short and add more later.

Tuesday, January 24, 2006 5:34 PM CST

THANK YOU BRENDA FOR A WONDERFUL NEW UPDATE ON LIVEE'S PAGE.
IN CONJUNCTION WITH THE 2006 DANCE MARATHON WE INTRODUCE CHICKEN LITTLE. HE WILL BE ON LIVEE'S T-SHIRTS COMPLIMENTS OF OUR MORAL GROUP #29, THEY ARE THE BEST. THANK YOU NIKKI FOR PUMPING UP THE GROUP AND MAKING IT FUN!!

We are going to blow over to the Hawkeye Basketball game real soon. Anyone going to the game will notice Dance Marathon students out raising some funds. Please show your support when you see them. All the monies collected stays right here to help families and kids facing illness with the emphasis on hemotology/oncology. Cancer kids deserve the best. Thanks to all of their hard work.

Monday, January 23, 2006 8:39 PM CST

Hello World!!!
Livee and I have been hanging out. She did have a dental appointment for them to check her teeth. She has not been to the Dentist since right before her diagnosis 2 years ago. Unfortunetly she does not have the best enamel which has caused some issues. One of her molars has a hole in it and she will need for it to be capped they will do that on Wednesday morning. Her top teeth are for sure going to be coming out real soon. They are moving everyday, the good news is she seems to have plenty of room.

We are going to the Hawkeye Basketball game Tuesday night. The Dance Marathoners are doing some canning at the game to raise money. I believe they are introducing some families at halftime, I am not for sure.

Livee will have dance class on Wednesday, she seems to really enjoy it. Then off to clinic on Thursday morning. I am going to confirm with Steve a few things. I need to get back to work but do not have fulltime people yet. It is really difficult to find appropriate people. I am more than picky and rightfully so. Livee has come way to far to be complacent now. It will all work out in due time.

Thanks for sticking with us, and all of the support. It means alot to our family for Livee.

Sunday, January 15, 2006 6:16 PM CST

Here we are the middle of January already. Wasn't it just New Years Day? We hope to continue moving forward in 2006!!
Olivia is changing everyday it seems, I have noticed her teeth really changing. It won't be long for her two top teeth to fall out. Last Wednesday she had a tooth that chipped. Not a good thing, right before her cancer diagnosis we had been to the dentist and at that time they told us she has a defciency in her enamel. Darn the luck. I am sure with all of the chemo,meds, and radiation along with not being able to go to the dentist for two years has taken its toll. The doctor said we can now take her to the dentist but she will need an antibiotic first. We hound her all the time about brushing, but it usually goes in one ear and out of the other.
I did forget to mention that Livee is now only on one medication just 1.5 pills per day. I am so happy, probably by next month they will eliminate that one too. This is starting to sound familiar, it was the beginning of February 2005 that she was able to stop all meds only this time it will be forever we pray.

The doctors for sure gave us to go ahead for Olivia to start school after Spring break. Wow, my baby gets to start school finally. We are looking at having a health associate with her to be the watch dog. That definitely gives me a sense of relief. It is pretty scary but yet exciting for Olivia to reach this milestone. Livee will start in the 1st grade so I guess she won't have a kindergarten picture taken or those memories, but I think we have enough pictures and other memories to replace that.

I have kept Livee pretty close to home except she started her dance class last week, with the Docs permission. I freaked out a bit because all of these little people were in a small area, so of course I was checking for coughing, sneezing, etc...I always take a mask with just in case Livee needs to put it on. The actual class is small but we had to walk through these kids to get to the dance floor. Parents probably think I am weird but have no idea what Olivia has gone through.

As always thanks for listening. Our friend Chance is improving also the power of prayer does work.

Thursday, January 12, 2006 3:10 PM CST

Hey everyone, a quick update.
Today's report from clinic is good. Olivia's spinal results are fine, no A-typical cells just normal. Her other lab numbers were ok, her white count took a bit of a dip but they are not to concerned. We will go for labs in 2 weeks then her next spinal is slated for February 10th. We pray that will be it for intrathical treatment. They will continue with periodic spinals for a while after that. Probably every 3-6 months to moniter her CNS (central nervous system). Also at some point they will do another bone marrow aspirate to follow up and make sure all is clear.
We are moving in the right direction for sure, and we hope it stays that way. Our prayers are always with those still conquering the beast, cancer has no enemies and does not have a schedule either. Cure is the answer.

Tuesday, January 10, 2006 5:26 PM CST

Not much to report, which is a good thing. Olivia will be going on Thursday for a spinal tap with treatment. We need to be there @7:45 the earlier the better since Livs can't eat before hand. We usually get out of there by noon. I dread each procedure she must have, the worry can totally consume you. I pray for only a positive outcome. Her poor little back has some scars under the skin, a bump or two. Hopefully in time these will dissipate and not be noticeable. As any parent would agree, a scar is minor and pales in comparison to all the rest. These kids have other minor scars from their central line or port entries. Time heals all and those scars will fade.

I will update with info on Thursday, I don't when labs are done if they are looking for any new additional information.

Friday, January 6, 2006 9:16 AM CST

Just a quick update. Livee is getting ready for school this morning. She has been doing fine considering she is homebound for the most part. Again I feel you just can't be to careful. I did talk with Steve from UIHC yesterday about the results of the lymphocyte testing. Without going into a lot of jargon he said her T-cells were normal and the rest on a scale of 1-10 puts her immune system somewhere in the 5 range. The percentages on the different components were close to the normal range but not quite. So she is moving forward and doing well. She will be 6 months post transplant next month. I have so many mixed feelings about what I should allow her to do and then erroring on the side of caution. It's scary to think just one rotten bug could really set her back or even worse. But then on the other hand I want her to live and be a kid too. We just need to be patient and do what we feel is best at that moment.
I think my paranoia is pretty evident.
I need to scoot for now. Thank you for the support and prayers.

Wednesday, January 4, 2006 10:51 AM CST

I hope everyone rang in the New Year safely.
Happy Birthday to cousin Tanner, today she is sweet "16".

Olivia has been doing fine, alot of energy and still a night owl. She plays so hard and then sometimes takes a nap late in the afternoon. Then of course she is wound up the rest of the night. One of these days it will all straighten around. Last evening she and Dave made cupcakes. That is their thing, cooking together and also grocery shopping.

We don't go back to UIHC until January 12th. She will have a spinal with treatment, but not a marrow. Right now we are still awaiting the results of the lymphocytes test. They are checking to see how her lymphocytes perform, if they work corretly to fight an infection. I don't know when we will know. Another step in the right direction post transplant. There are so many factors involved, it's amazing any of our bodies function like they do.

We are praying for all of the families currently at UIHC fighting this demon. A special prayer to Chance, he is fighting an infection post transplant. We pray for this to subside so his body can be on the mend. These little people go through so much and need our prayers.

Around a month from now the University will hold the 12th annual Dance Marathon. Hundreds of college students and families take part in the two day event. The students raise millions of dollars to support cancer research and support the families in several different ways. Sometimes it's a gas card, or phone card, or prizes from the prize chest for the kids. All of the little but important things that help to get through the day while at UIHC. The Bone Marrow Unit on 3JCE was completely paid for with monies they raised. That is pretty incredible, so if you need a cause to support this is a great one or of course the Leukemia & Lymphoma Society. Both support families and the funds stay local.

I need to get a move on. I forget to mention that last Thursday when we had the very eventful day that one more incident occured. Olivia was playing basketball (inside)with her pal Max and dove for the ball right into the window sill. She cracked her head open and was bleeding, the good news was it stopped bleeding without having stitches. We made her sit with a cold pak on her head to make sure she was ok. I told you nothing could have ruined our day. Take care and we will update soon.

Saturday, December 31, 2005 9:03 PM CST

From our Family to all of you, we wish only the best for 2006!! We pray for health, happiness, and even greater strides for a cure!! Cure for cancer, what an awesome idea. You have all been such a wonderful support system. So many of our prayers have been answered. The power of prayer, the power of prayer. Let's all continue to support each other and the many families dealing with cancer. Thank you and God Bless all.

Thursday, December 29, 2005 7:22 PM CST

I am pretty pumped after today's appointment. I have nothing but optimism right now. Olivia is doing great, all of her numbers are improving. White Count is around 3.6, platelets, and all other numbers were great. They also ran the lab work to see how her immune system is functioning. It has to do with the lymphocytes and how they react. I don't know when we will have those results. They said that she will possibly be off her meds real soon. They generally wait until 6 months post transplant to ween off which would be February, but we may get to sooner. Yeah!!!They also indicated that she might be able to start school following Spring Break or somewhere close to that time. I am trying to contain my excitement about all of this but I can't help myself. Of course I am guarded and probably always will be. I will see when the time arrives how I feel about all of it. I don't want to jump the gun and move backward anyway shape or form.
Livee is having a friend for a sleepover tonight. She has not been able to do this before. She also is going to see a movie tomorrow, I don't know which one. Today after clinic she had a little mishap. She wanted to ride her bike and ended up crashing, the savior was she had her helmet, and pads on. She was riding her new scooter right before the bike incident. I had to have her glasses adjusted, they were totally cockeyed. Oh what an eventful day we had. I forgot to mention that this morning someone rang our doorbell at 2am, (don't have a clue, no one was there of course)then when we were getting ready to go to clinic our friend "Chocolate" was in the garage and would not go in the house. And finally this afternoon following the bike wreck once again our friend "Chocolate" got loose from her coller and ran around the neighborhood, blocked traffic when she went into the street. This went on for aprrox. 25 minutes. I really have to laugh at all of this, after the great news earlier I don't think anything could ruin my day.
Well I need to run, the kids are being rather wild. Thanks for listening to me ramble and pass on the positive news.

Tuesday, December 27, 2005 3:41 PM CST

Wow, what an awesome Christmas we had. Just being home was enough gift for me. Olivia had Santa's sleigh emptied right in our livingroom I think. Just when I thought I was getting ahead and having a little more breathing room. She deserves to be spoiled, someday we can change that. I cleaned out her toy room to make room. She along with toys did receive books and a vanity for her room. So a few practical items too.
We go to clinic this coming Thursday just for labs. I am thrilled with her progress thus far. Olivia has not had any transfusions, blood or platelets and has been off cyclosporine for almost 2 months. She continues to take only 2 meds that keep out infection in the lungs. I think those will continue for another month or so. At some point they will be testing to see where exactly her immune system is as far as fighting off infection. They introduce a mock virus to her immune system (in the lab). This will determine if her new immune system is able to fight like it should. What I know for sure is we have 2 spinals left with chemo treatments. One will be in January and then one in February.
They have given us the ok for Olivia to start dance lessons in January. She is rather excited about this, she loves to entertain and shake her bootie.I have discussed with the instuctor our situation and they are willing to work around this, Re:keep an eye on kids with colds etc...I think it will be really good for her to interact with others. At this point I don't know about the school issue, my personal thought is maybe after Spring Break but of course we will wait and see. It is somewhat of a risk to put her in dance but we are shooting for a small class just once a week. I of course will be HawkMom and watch everything. I don't know when or if a parent quits being paranoid.
I hope you all had a great Holiday and Santa found you. I think about and pray for those families that were without their loved one this Christmas. We also continue prayers for our little people going through this and having to spend Christmas in the hospital. I think about you often and know how difficult it can be. Keep positive thoughts, faith, and find inner strength somehow. Never give up!!!!

Wednesday, December 21, 2005 8:02 PM CST

We wish all of you a Happy and Safe Holiday.
We have so much to be thankful for. This year has been a tough one Livee has had multiple spinal and marrow aspirates, heart surgery in April, and then her Miracle Transplant in August, she has come through with her strength, courage, and determination. We have a very special little person in our lives and we feel blessed each day. Take time to reflect, enjoy family, and truly appreciate each other.
Please keep all of the other families going through this in your prayers. The journey is a long one but with prayer and support we can help each other along the way.

Friday, December 16, 2005 3:45 PM CST

Miss Livee has been having fun fun fun. She has made two gingerbread houses. Her teacher Dory and then friend Michelle both did a great job with her. It is so nice to see her being a kid and having fun.
Not much else going on, I am shopped out. I have even taken a couple of items back already. Typical woman changing her mind time and time again. Olivia has so many things and some that have never been touched. So I am being more selective this year with her Christmas list. I must say it is hard to not just give her whatever she wants within reason. I have to get back to reality though. I am sure all of you (cancer parents) know what I mean.
I will close for now, be safe and enjoy the Pre-Holidays.
Don't forget to include our other friends on this same journey in your prayers.

Thursday, December 15, 2005 2:16 PM CST

Olivia and I went sledding yesterday. What a great time, she loved it. Our neighbors along with another little friend all went over to Hoover School. Livee loves a challenge, she will want to go again I am sure. Today she seems fine from being out in the cold and getting wet.
Livee also went with me to work for lunch. A small group of us had lunch together, I called ahead to make sure no one was sick etc... we had a gift exchange too. She enjoys talking with everyone.
Not much else to report for now. I promise to have pictures soon.

Tuesday, December 13, 2005 7:38 PM CST

Update Update!!! News Flash !!!!

We have great news again today, Steve from UIHC called and reported that everything is normal with Livee's marrow. Yee Haw !!!!!! What a relief, I have been thinking about it all day. Thank you, thank you Angels watching over Livee. Now maybe I can focus on something, I really don't accomplish much when I am preoccupied wondering and worrying. No more excuses right? Time to get busy.
I once again find the toy/computer room quite a mess. I think Livee and I need to have a serious convo about what she will play with and what we can eliminate. That also goes for her closet, she is a typical girl one day we love this or that and the next she refuses to wear it. Go figure, I did not realize this started so young. I don't remember really caring much about what I wore. It could be because I have only brothers and was a bit of a tomboy. Anyway it's a good thing for Kidworks, a consignment shop that I take Livee's clothes and all.

Also I promise to replace the missing pictures on the web page. Thanks for being patient with me. As always we are praying for all our families dealing with cancer. Support is so important and means so much.

Monday, December 12, 2005 5:12 PM CST

I have great news, results of Olivia's spinal tap looked fine. We won't know on the marrow results until tomorrow. The other important news are the results from her lab work a couple of weeks ago show that engraftment still looks like it should and is indeed donor cells. We are so thankful and elated. Livee's white count is at 2.5 so somewhat low but everything seems to be holding steady otherwise. Her ANC (actual neutraphil count)is 1300 which is great, if this number is over 1000 her body can better fight off infection etc... The Doctors don't want to see us now until December 29th. Olivia will have another spinal on January 12th with treatment, and then I believe her last one in February. After that we should be able to spread these out hopefully, or maybe not at all that would be wonderful for her. We will see what the Docs say. Livee was spoiled rotten today by Grandma and Grandpa. She milked them pretty good. Kids are so creative.

Please say an extra prayer for our friend Chance, he received a bone marrow transplant today from his younger brother. Chance was diagnosed just this last year with AML and has had many hurdles to overcome. He continues to be strong and fight this monster. We think of the many families dealing with this and keep all of them in our prayers.

Thank you to our family and friends and the many prayers for Livee.

Sunday, December 11, 2005 7:28 PM CST

I need to update huh? We have been having fun in the snow, Olivia and Dave built a snowman yesterday. It looks great. I have been trying to get shopping but keep getting side tracked for one reason or another. Livee is doing real well considering we are sort of captive in our own home. I am playing it safe and keeping her close to home. She did go to the neighbors today to play with Max. We will be going to UIHC early tomorrow.
Olivia will have a spinal and marrow procedure to make sure all is clear. She will receive a single dose of chemo with her spinal. I am nervous and scared as usual, it just does not get any easier. She has been through enough but I realize we must moniter and keep on top of the bad guy we know as cancer. I pray and pray to hear only good. We will also find out results from her last blood work to make sure the engraftment is still good to go. I am not sure then how many more spinals they want after this. How much is to much and how much is not enough? A question I struggle with. Every day I also pray for the many families that must deal with this. Cancer does not take a Holiday or care when it shows its ugly face. Please keep these families in your prayers too.
Our family would like to thank all of you for continuing to show support, comfort, and keeping Olivia in your prayers. I will update at some point tomorrow. Thanks and God Bless.

Monday, December 5, 2005 10:25 AM CST

We had a great weekend despite the cold. On Saturday we went to pick out our Christmas tree. We always go to Pleasant Valley Nursery, Dave worked for them several years. We found a real nice 6ft full tree. We picked it out rather quickly since it was so darn cold. We decorated on Saturday evening and are still not done. I am sorting through older decorations and boxing them up. You know how it is, out with the old.
In case you are wondering why I can update at this time of day? I have had a change of plans. I will be on leave from work until February 2006. I had a minor break down at work last week and decided I should be home with Livee. The stress of having 5 different people come into my home and who knows what they could be bringing with them. No fault of theirs but a simple fact. Livee will still have school and play time with one of the other girls. I feel pretty good about this. I am so used to working but right now Livee's needs are more important. I am thankful that my work place has been very understanding. I hope to accomplish the many things I have on my list.
Livee is doing her school time right now, it will be so wonderful to have her in school with the other kids. That time will come Spring of 2006.

Thursday, December 1, 2005 8:37 PM CST

We are finally updating. I guess I took a little break there. I have been busy with all the hustle and bustle. We did go to clinic today and are happy to report that Livee's white count is 2.6 much better than a couple of weeks ago. We will take that for now. Her platelets and hemoglobin along with the rest all looked fine. They are checking again to make sure the engraftment is still holding on. We won't know anything until tomorrow since they have not called with results. We pray that all will be well. I can tell Olivia is feeling great, she is constantly wanting to go outside or play this game or that. It is wonderful to have her bug the heck out of me. She wears me out, last night after she discovered that it snowed she wanted to take Chocolate out and play. I gave in and said ok, we only live once who needs sleep (it was almost 11pm). We are still way off schedule and Livee is still a night owl. Livee is excited to see Chicken Little tomorrow with her friend Mariah. They will go early afternoon to avoid the crowds. It should be fun.
I better sign off for now. Happy shopping. More later.

Sunday, November 27, 2005 1:59 PM CST

Today is officially day 100 post transplant. Also good news, the pain and swelling in Olivia's feet has pretty much subsided. Strange for something to just show up and disappear as quickly, I am thinking it was probably a reaction from some new shoes even though she did not wear them long. I have to remember since radiation her skin is different and this type of thing may happen. The best thing is it is gone and she walks like normal again. Also we go to clinic this coming Thursday just for labs. The Doctor said her immune system is doing well and she will not need the IVIG treatment. That is a good sign. Now we just have to once again hope her white count is going up. She acts fine, looks fine, and seems to feel good. Her body maybe just needs a little more time to figure this out.
We had a nice time with family and friends, I have so much to do but really am not motivated. The Holidays are great but for me it is overwhelming, I think the meaning sometimes is lost. I try to keep it simple and appreciate what we have. Olivia has list for Santa keeps growing by leaps and bounds. He will need a different form of transportation before stopping here. She will be spoiled this Christmas and why not she deserves it.
I need to run, but wanted to pass on our Milestone.

Thursday, November 24, 2005 9:17 PM CST

Hi everyone, hope your Turkey Day has been enjoyable. We have been visiting with family and chilling out. Literally!!
Livee and I went to UIHC for an unscheduled visit yesterday. On Tuesday she had complained about pain in her feet so after taking a look they looked red and swollen. She said they hurt to the point that she could not walk. It was late enough that the clinic was closed that day. I thought I would see if maybe they would be better on Wednesday but that was not the case. In fact she was awake most of the night Tuesday with pain. So after work on Wednesday we went to the clinic. After waiting and then seeing dermatology they determined it to be a reaction from the Ara-C (chemo) possibly. We thought it could have been the first signs of GVHD but they said no it did not look like it. My opinion is how do they know for sure, maybe this is her GVH? I guess whatever will be. Reguardless we are pretty excited though because Sunday will officially be day 100 post transplant. A milestone in the transplant world. We are getting ready to turn in for tonight.
Enjoy your busy shopping day tomorrow, something I won't be doing. Too many crazy people. We will add more later.

Sunday, November 20, 2005 4:18 PM CST

Livee is doing fine, she enjoyed some time on Saturday with her neighbor friend Max. They are the same age and have a lot of fun together. It was a nice break for Livs to see some new surroundings. I have been keeping her pretty isolated since her count is low. I truly hope the count decides to rebound and come up by our next visit. It will be a week from Thanksgiving. They also will retest for engraftment at that time. Her next spinal and marrow will be December 12th. I must have faith that we will get only good results on that day. I am trying not to dwell on it but it is tough not to.
Right now we are looking forward to having time with family on Thanksgiving. We have so much to be thankful for. Work should be a breeze this week. Not much going on and many on vacation. I have to miss some myself, I will be home with Olivia. No one to watch her. I am looking forward to the time with her. I am trying to get Livee's list for Santa, she has not given me many clues yet. I do want to take her to see Santa soon before all of the kids are out of school. I think we should be ok if I take her during the week midday, probably won't be to many people.
I need to get busy but will add more soon.

Thursday, November 17, 2005 6:33 PM CST

Just a quick update tonight. Livee and I went to clinic today. I did not get my wish on the white count it is still 1.8 so not climbing yet. They still think it could be GVH but are not sure. Also they did not want Livee to have any shots to help boost the white count. So we will wait and see then in 2 weeks when we return to clinic. At that time they will check the engraftment also. Previously everything looked good so we hope nothing else is going on. Her next spinal and marrow are scheduled for December 12th. We pray for only good news as usual. She has come to far and been through way too much. I am worried a little bit but will keep the faith and all will be fine. Right now she needs my assistance so I need to cut this short.
More later.

Monday, November 14, 2005 8:58 PM CST

Today was my first day back at work. It went surprisingly well, that is after I had a few tears in the morning. I think just the shock of being there and thinking of Olivia. I called her at noon and she was eating and playing games with Michelle. After talking with her I felt much better. Tonight she is wanting my undivided attention. She is doing pretty good, she did have a slight cough Sunday morning but it seems to have gone away, and then earlier tonight she complained of a headache and took a nap. I kept a close eye on her and when she woke up she seemed fine. I think she played so hard today she was tuckered out. She is raring to go now. We will be going to clinic on Thursday just for labs. I would think her white count is better judging by her activity level. I've been fooled before, we are approaching day 90 post transplant. Hard to believe at times I try not to look back but to look ahead at all the great things in store for Livee. I just want people to get to know her and let her enjoy the company of other kids her own age. It has been so long since she has been able to have that freedom. I am so proud of her for being such a trooper through all of this. She never complains or mopes around, the only time she is cranky is if she is tired. I guess we are all like that.
I should close for now, but will update as usual. God Bless.

Saturday, November 12, 2005 10:12 AM CST

Livee is still sleeping, she could use a little catching up. I ended up giving her a GCSF shot on Thursday night and then last night. Hopefully this will boost her white count back into the normal range. She has been doing fine otherwise. I will be starting work on Monday, I have mixed emotions about the whole thing. I will try to focus and not worry about Livee. I know she is in good hands but I will miss being with her. We are quite the team together. She keeps my spirits up and I marvel at her positive bubbling personality. I wish more people could be like her.
The Gazette called me the other night for a follow up story about our bus trip, so if anyone is interested in reading it I believe it will be in the sports section of today's Gazette the Iowa City edition. I don't have one yet. Hope the Hawkeyes pull this one off today.
I will update sometime soon. Thanks for listening.

Wednesday, November 9, 2005 1:42 PM CST

We are back home now and have been since around noon. Nothing to report only that Olivia's white count is still low around 1.9 normal range is 4,000 to 12,000 so 1900 is too low for my comfort zone. I will be giving her a GCSF shot tonight and tomorrow night too. The rest of her numbers looked fine, again when the white count is low the neutrophil count is also. This is not good because these are the guys that fight off infection. The doctors said this could be a sign of some GVH but they don't know for sure.
The preliminary results of her spinal were fine only 1 white cell there which they consider normal. Steve will call later today with a more definitive answer. I have to return to UICH today to pick up the GCSF shot. So right now I know we will be returning to the clinic next Thursday for labs. We hope her white count will increase some by then. I can tell she is a little on the tired side. It is one of those days. Michelle will be here soon to hang out with Olivia. Thanks for the many prayers for Livee.

Tuesday, November 8, 2005 5:32 PM CST

Note---Please check out Livee's new photos.
Today Olivia went to see a movie with Michelle. I thought it would do her some good to get out. They said there were only 3 other people there so that worked out well. Livee has not really been anywhere in public for some time now. It really is just not worth the risk. We are around day 80 post transplant moving right along to day 100. Sometimes it just does not seem possible. Olivia has been doing great and quite active, just the way we like it. No GVHD as of yet, she may not have any there really are no time restraints or road map for this. I figure that Olivia's body will take care of itself the way it should. Ultimately I have no control so try not to worry about it. I do hope that her white count is better tomorrow. I do have a prayer request for tomorrow, we need only good news from Olivia's spinal tap. We will be at UIHC by 8am and hope to be home by noon, it just depends on Livee's recovery time. I wish she did not have to go through any more spinals but know that it is better to be on top of this. She will have a total of 6 chemo treatments with these spinals. I will try to update when we get home tomorrow.
The power of prayer is incredible. Thanks for being there.

Sunday, November 6, 2005 8:06 AM CST

Ok now, let me update starting last Thursday. Olivia and I were at clinic from 8:30am until 2pm. The IVIG took a while to administer just because Olivia wanted it to drip slower so she could not feel it as much. She had a IV in her hand for the process. Her counts were pretty good except the white count, it was little low at 1.7 so they had me give her a GCSF shot on Thursday night. That will help boost her white count which in turn will boost her neutrophils count. Once we got home we threw our bags together and off to Grandma's we went. I stayed over until Friday and then returned home, we are picking her up today. She has such a good time with her cousin Tori. Olivia looks up to her and Tori gets to be in charge for a change. She has an older sister Tanner so being able to show Livee the ropes gives Tori a chance to be the big dog. Those two are like peas in a pod.

Words can't describe how wonderful the bus trip was on Saturday. Wow, we had a spectacular day with absolutely the best friends in the world. Dave and I now realize what a special group of people we have in our lives. We can't thank them enough for everything they have done for us and Livee.
The day started off at 5:45am loading the bus in Iowa City.
We stopped in Davenport to pick up my brother and nephew. That is pretty cool that they would do that. The bus was packed full. We had games and trivia questions along with prizes as we traveled. The football game was great, it did start to rain in the 2nd half and of course the outcome not so good. But we enjoyed our time away and being around friends. By the time we returned it was 8pm and raining pretty hard. I know everyone was ready to be home in their beds.
A very special and memorable day for us which we will treasure always. Thanks to all of you that helped out in any capacity. As we continue Olivia's journey to good health and a great 2006. Take care and God Bless.

Tuesday, November 1, 2005 7:54 PM CST

Olivia has transformed back from a vampire. She had such a great time, but I have to keep reminding her to lay off the candy. So for all of you joining us for the bus trip on Saturday I will supply the candy.

They had a real nice artical in todays Iowa City Press Citizen about the bus trip. Dave and I are humbled by the nice compliments and support we have been shown. Thanks to all of you for being part of this journey. We appreciate the fact that we have such a wonderful support system and network of great friends. You can read the article at www.press-citizen.com or icgov.org click on news. Tomorrow there will be another article in the Cedar Rapids Gazette the IC addition. Thank you, thank you for supporting leukemia awareness and we hope "Cure" will be a reality someday soon.

I met the other two gals that will be here with Olivia while I work. They both seem fine and I think it will all work out. I don't know for sure yet my return date to work. I have to confirm all of that. We are now day 74 post transplant and reaching day 100 around Thanksgiving time, how appropriate. I need to run, more later of course.

Monday, October 31, 2005 9:52 PM CST

Happy Halloween !!! Happy Halloween !!!

Today we had a great day. I had the best birthday ever, being able to spend the day with Olivia. We had fun making her up into a vampire and then trick-or-treating. First we went to the clinic at UIHC and then tonight Livee and the neighbor boys brought home the mother load. I am trying to figure out what the heck to do with so much candy?? I am so happy for Livee. I promise to put the pictures on here right away when I get them.
Olivia seems to be feeling great, I don't know what her white count is right now we will find out on Thursday. She will receive IVIG (an immune booster)it will take 2-3 hours. Fun at the ole clinic, she will probably sleep and I hope to update with pictures then. We plan on taking off in the afternoon for my parents. Olivia will be staying with them until Sunday. Our friends have been very generous and are providing us with tickets and a bus trip to the Iowa/Northwestern game on Saturday. It is a fundraiser in conjunction with the fun. They are providing all of it for us, it should be a great time. In fact the Iowa City Press Citizen called me today and then the Gazette also. They are interested in the story as a follow up on Olivia.
I am hoping it brings more awareness about childhood cancers. I think people forget sometimes that cancer is not just an adult disease. Someday they must find a cure for this rotten beast.
Thanks for your thoughts and prayers as we continue our journey.

Thursday, October 27, 2005 2:32 PM CDT

One more clinic visit over until next week. All of Olivia's counts looked fine, except her white count is kind of low at 1.9 we would like that to be around 3 or so. The doctors don't really know why but said it could be a bit of GVH in the marrow?? It really could be from anything, the only problem with a lower white count is her neutrophil number is down less than 1000. That means we need to be real aware of bacteria and germs. Remember the neutrophils fight off infection. We hope next week her number will increase so we don't worry so much. We were told today that Livee will have 4 more spinals with treatment, just because that damn AML has tendencies to come back in the CNS (central nervous system). That would mean once a month now through February 2006, how much is too much? Who really knows, I guess it is better to over treat than to miss something. As far as everything else she is doing great. She looks so good and is starting to get her hair back, it looks pretty dark but I really can't tell. And really who cares what it looks like, as long as we have her underneath it.

Livee is pretty excited about Halloween, we are perfecting the vampire look. She is really into scary movies and wants to watch them all of the time. She seems to know the difference between real and make believe. I think she likes the challenge of being scared, she covers her eyes but peaks between her fingers.

Things are falling into to place for me to return to work, however I don't think I will ever be ready. It is so hard to switch gears and concentrate sometimes. Livee and I are quite the team and it will be hard to leave her in the care of others. It's like having an infant go to the daycare for the first time. I will be meeting the 2 other caregivers next week. Dory and Michelle are wonderful maybe I can shoot for a full house. I have to remember it will be temporary for how long I don't know for sure. With faith and support we will move forward as usual.

We saw a couple of other kids we know in clinic today, it is so amazing how strong these little people really are. They are true heroes and we need to keep all of them in our prayers as they fight the cancer demon.

Sunday, October 23, 2005 6:55 PM CDT

We are so happy to be home. Yesterday we caught up on some much needed sleep. Olivia slept in until 11:30 yesterday and today. Then today she had a 2 hour nap later. I kept checking on her to make sure she was ok. I am sure her body just needs the extra rest. When I think about all that she had been through just this last week alone it makes sense. I had a pretty lazy day myself, yesterday I worked in the kitchen reorganizing. I kept saying to myself what am I gaining by moving this here and that there kind of thing. Anyway, I did keep busy and sometimes that is the therapy I need.
Livee will go to clinic this Thursday just for labs. Just a poke of the finger. She will be happy with that, she could not wait to have the IV removed from her arm this last Friday. It had been in there since last Saturday. I am so glad this is all behind us. Olivia is truly "Free to Fly", no central line, no IV, nothing to get in her way.
When she went in on Thursday for her spinal/marrow she said "Mom will you help hold when they put me to sleep?" and she put her hand on her chest well in the past with her central line there is was habit to have me hold there. So we held the IV in her arm. As I have said before it is a comfort thing, the medicine can be cold going in. Whatever the case anything to make Olivia comfortable.
We are working on Olivia's vampire costume for Halloween, she has her own ideas. She has already planned out the next 3 years of costumes. Only Livee, thinking and planning ahead. I think next year she mentioned a bat, then when she is eight she wants to answer the door but not go out and then the next year the grim reaper. That should make it easy for me right? We love this time of year and will make it fun and memorable for Livee. Maybe I can finally update some pictures. Just a little behind on that department. I have been a little busy. I better get moving and will chat later. Take care and God Bless.

Friday, October 21, 2005 3:30 PM CDT

We are outta here real soon. Olivia just finished her IV antibiotic. Now we just need to get our script from pharmacy and have Dad come and get us. He is still working right now. It sure will be nice to be home again.
I will update more later, Olivia wants to ride the bike right now. She is still hooked up to shadow (her IV pole) so I need to help her.

Thursday, October 20, 2005 3:04 PM CDT

We are back from Olivia's procedure and we have the preliminary results. Steve just told us the marrow looked good and that there were only 3 white cells in the spinal. This is considered normal, anything under 5. Thank you God for answering our prayers. The sun is shining on us today.
We did not even go up to floor 5 until 1pm or so and we were back in Livee's room at 2pm. That is pretty quick, she is already playing on the other computer in the play room. She has been eating wheat thins and drinking sprite. I am so releived, Dave is working so I called him to report the good news. Now we can kick back and relax this evening at the UI Hilton.
They told me this morning that Olivia will have an oral antiobitic when we go home. I misunderstood and thought she would be done after tomorrows dose. Oh well, minor detail. I already told Livee that she would have to take another pill for about a week or so. She pretty much tuned me out. I think she is so tired of pills she really does not care. Who could blame her.
Thank you, thank you for the many prayers for Livee!!! Faith is all you need.

Thursday, October 20, 2005 9:14 AM CDT

Olivia is still sleeping and I hope she will for a while yet. Her procedure is not until 12:30 and she can not have any food or drink prior. The music therapist will be here later this am, Olivia just loves music. I hope she can hang with Kathy for a while too. Just to pass the time away and let her be a kid. I am mentally exhausted from worry, I am trying to be strong but it can be hard. Livee has been through so much for so long. It is so tough to see your child endure these procedures time and time again. She will be fine, she carries me through. We are a team and there for each other no matter what.
We may know preliminary results by days end. Please pray to God for positive news. Only the components that need to be there and nothing else. Olivia has come to far she deserves a break from this monster. We hope the new marrow taking over is the cause for these monocytes showing up. Steve the P.A. did say that last Friday he got a little blood in the spinal sample. This can cause the results to be off somewhat too. We need strength and prayer to get us through today. God will take care of us we just need to keep the faith. I am just asking for an extra prayer sent Olivia's way.
I promise to update when I know anything. Chin up and think positive. Thank you all for being there for us.

Wednesday, October 19, 2005 9:31 AM CDT

We now know we will be going home on Friday. Olivia will finish out her 7 day course of antibiotics through the IV line she has in and then she will be done with that. No oral antibiotics at home Yippee!!!!! I need to go right now but I will add more later.

Tuesday, October 18, 2005 12:05 AM CDT

I know a little more than yesterday. They told us this morning that after her procedure on Thursday we will get to go home. So in hospital terms that means by late afternoon early evening we should be there. She will be on an oral antibiotic for a while.
Thanks to all of you for your support during this stressful time. We pray that the results on Thursday will show nothing but a positive outcome. With strength and prayer we will make it through. Olivia is doing so remarkable and feeling so much better since that darn line has been out. Her numbers are all fine, she has not had any transfusions blood or platelets since before discharge September 7th. All things point in the right direction.
Right now Livee is playing Clue with Kathy, they have such a good time together. They have also made some Halloween decorations. I should get Olivia some lunch, she is picky at times with what she will eat. We are somewhat limited up here. I did not bring any food since I did not think we would be staying long. Only a couple more days then home we go.
Keep praying for Princess Livee.Thanks and God Bless.

Monday, October 17, 2005 5:14 PM CDT

Olivia is 2 months post transplant. She is doing fine keeping busy with activites here at UIHC. I had a meeting this morning with a Home Care Agency to discuss coverage for Olivia. I am not even sure if insurance will cover this. They really fight this type of coverage even though it is medically necessary for Olivia to be home. I mean what do they want? She had a bone marrow transplant and has a compromised immune system. Come on people give us a break. How much more disabled can you be. Anyway I am sure somehow it will all work out. I have thought about quitting my job to be with Olivia but we need the income. Why should anyone have to make choices like this? Hopefully it will be covered and I can move on.

We did find out today that the spinal from Friday was not completely fine. There are some suspect white cells a few more than they like to see. Usually (0-10) are considered normal well she had 15 of these cells. They said they are not leukemic cells or blasts (the immature white cells) but monocytes. Since the type of cancer Olivia had is monoblastic they want be completely sure they are not missing something. She is scheduled for another spinal and marrow on this Thursday. We know that the infection from her line could have caused the drop in her white count or sometimes infection can affect the spinal tap results. We just pray this is not something else showing up. How much more can Olivia take. Now we can worry about this the rest of the week. Lord give me strength. She has come way to far. Pray for good results on Thursday.

I will report anything that we find out. I forgot to mention she will be on IV antibiotics until Thursday and then she will have oral for a while. We possibly will get to go home Thursday after she recovers from her procedure. It is scheduled for 12:30. I need to get a move on.

Sunday, October 16, 2005 6:47 PM CDT

Things are sailing along real smooth. Olivia has not had any fevers today and has energy to burn. She should her white count was 15.9 what a jump from Friday at 1.2 she only a GCSF on Friday and Saturday nights. So she will not have one tonight for sure. She has an IV in her left hand and they have continued the antiobitics through that line. Once they remove the IV she will need to have oral antibiotics. Her site area looks much improved and has a bit of drainage. This is fine because it means the infection is clearing. We are confident we made the right move by getting that nasty line out of there and that it was the source for her fever and low white count.

We don't know at this point when we get to go home. I would imagine not for a few days, but things can always change too. As long as her site seems to be healing and no fevers we should scoot out soon.

Tomorrow Livee will have some company from my parents. I have a meeting at the house in the morning. This gives me a little break and my parents a chance to hang with Livee. I am sure she will have an activity in the morning with Kathy. Olivia wants to make a Halloween bat of some kind. The kids doors are decorated with Pumpkins, Bats, etc... She wants to put something on her door. I need to make this short as time has gotten away as usual. More tomorrow.

Saturday, October 15, 2005 8:57 PM CDT

Hey Guess What?? I have a new girl on my hands, Olivia is now central line free. Yes, that is correct. Today around 4:30 I received a call from Dr. Meehan wanting to know if we could come up to surgery on floor 5 for them to remove Olivia's central line. I said you got it, so Livee and I gathered our thoughts and went up. Livee was a trooper once we got there she sat on the table and closed her eyes she said "when are they going to give me the sleepy medicine Mom" about that time they did and off to sleep she went. Since returning to our room we have Olivia back. Earlier she was pretty looped up and had gotten sick 3 times and had a slight fever. I am so happy that is behind her now. Dr. Meehan said when the line slips out as easily as her line did you just know it is infected.
Olivia is watching a movie now and having a bite to eat finally. We still have meds and her GCSF shot tonight. I am anticipating this to go a little smoother than last night. Anyway I need to run but just wanted to share the good news and of course will update tomorrow.
Thanks to everyone again for sending prayers.

Saturday, October 15, 2005 2:16 PM CDT

A quick update to inform you of Olivia's situation. The results are back from yesterdays spinal and all is clear, thank you God for this blessing. After our clinic visit we knew that her white count had dropped to 1.2 but the rest of her numbers looked fine. The rest of the day Olivia complained of pain from her central line site and said she had a headache. She took a nap and then played at the neighbors for a while. After we came home she layed down again and was pretty lathargic. I knew she did not feel well so I took her temp and she in fact had a fever of 102. So I called the hospital and we came over about 9pm for admittance. Earlier at clinic they had taken a swab sample from around her site and then cultured it last night. The swab came back positive for bacteria and we are waiting on the culture. This would pretty much indicate that the source of Liv's fever is the central line. They started antibiotics last evening and her fever subsided. The Doctor this morning looked at her site and agreed that we should probably think about having it removed. Ultimately this is what we wanted anyway. The darn thing has just not been right since they implanted it in July.
Today Olivia's white count is 2.0 and her other numbers are fine. This is good news, also the surgeons are coming by this afternoon to look at her site. We hope to get this scheduled asap. It will be the lesser of two evils to have it removed. Olivia already knows that she will have to endure more pokes but seems to understand and wants the line out too. Once something starts growing on these lines it never seems to completely go away.
I have been watching the crazy Iowa Football fans and witnessed an arrest from the 3rd floor window. Only in Iowa City huh?? Some cheap entertainment I guess. Olivia is napping right now. She has not eaten yet today and did get sick twice, she really has nothing in her belly. Hopefully after her nap she will feel better and want to eat something. I went up to the Library and got some Halloween videos and books.
I will of course update as our day unfolds. Thanks for sending your prayers Olivia's way.

Friday, October 14, 2005 9:04 PM CDT

Real quick, we are admitted to UIHC room # 88 phone 353-9201. Olivia has a fever, we will find out the source but we think it is because of her central line. At clinic today we discussed having it removed soon. Her white count was low but the rest looked fine. This could be a touch of GVHD we just don't know yet.
Please say lots of prayers for Livee!!! Our little Angel can fight this like she always does. We will know tomorrow about all of this. Pray for Livee, Pray for Livee.

Thursday, October 13, 2005 8:25 PM CDT

We are doing great. Olivia has been playing hard and having fun. She really enjoys her time with Dory and Michelle. They are wonderful. We did go to a parade last night, she really enjoyed being with other kids and the candy too. I meet Monday with a health care company to discuss the coverage we will have for Olivia. I probably won't be back until November at some point. I guess that would be fine. I am getting much accomplished here at home. You can probably tell I am not to anxious to get there. I guess the adjustment and worrying if Olivia is happy are my concerns. But like any Mom I am probably thinking about this way to much and she will be just fine.

We will be at UIHC around 7am tomorrow. Olivia will have a spinal tap with Ara-C chemo treatment. The good part is we are the first slated and Olivia will not be uncomfortable because she can't eat before. We hope for a speedy recovery for her. And God willing all will be clear and fine. Please say an extra prayer for Livee. Our little Angel will do just fine. We will help her be strong and positive for yet one more procedure. Right now she has another procedure in November and the last one in December. Each will be a spinal with Ara-C chemo. We will know tomorrow on her numbers and how she is doing overall. Honestly you would never know had a transplant except for her wispy hair. I think we are around day 55 post transplant. One day at a time. Prayers for Livee, Prayers for Livee. Thanks to all.

Tuesday, October 11, 2005 9:30 PM CDT

A quick update, actually not much to report. That is just fine with us. Olivia had school yesterday with Dori and then
got to hang out with Michelle. Today Livee just played with Michelle while I worked in the garage and the basement. The clutter seems to never end but finally I am making some progress. Thank goodness for Michelle, I can focus on the task at hand and not be interrupted. That makes such a difference.
Tonight we had company from Davenport, my brother Ron and his wife Linda stopped by. They had some business here in town so we had dinner together here at the house. Olivia just loves to have visitors but we of course are being careful. Also just an update Livee has not had any signs of GVHD (graft versus host) as of yet. We will have to see what they say about it on Friday. I believe today is day 53 post transplant. So we are over half way to day 100. This is when we can step back a bit from the germ stand point. I am sure we will be paranoid for a long time.
Well I need to get going it is time for Livee to get to bed. More later.

Sunday, October 9, 2005 4:17 PM CDT

Well so far no real signs of GVHD (graft versus host), Friday night Livee did have some diarrhea and a slight headache on Saturday. Is this some GVHD?? Possibly but we have not seen anything since, I will probably call Steve on Monday just to let him know and he can make the call. How do they really know maybe she already had some but we just missed it. I guess with this as so much we just don't know. We will just forge ahead and not worry about it.

We are just hanging out waiting for my brother from Centerville and his family. It has been quite some time since we have seen them. I have been cleaning and sorting through some things. This could take me all year, it seems just too much junk and not enough time. I am making piles for Goodwill and some of the better items to sell at Kidworks. Livee already saw something in the trash and said "why did you throw this away without telling me first"? I need a better technique so she does not catch me. At least some of the clutter is disappearing. I made up my mind to get this done before I have to return to work.

Tonight we are going to have the usual bath and dressing change. Olivia's site looks so much better the antibiotic is doing it's thing. Now we just have to make it past Friday when Livs has just a spinal with chemo. Her eyelashes and eyebrows are growing in finally. I think I feel a little stubble on her head, I hope it comes back like last time but not too curly. I better get on the move. More later.

Friday, October 7, 2005 11:17 AM CDT

Finally a chance to sit down and update. Yesterdays appointment went fine. Olivia received IVIG a blood product she will get once a month for up to a year. We were in clinic from 8:30 until around noon. Before any blood product is given she receives tylenol and benedryl. They can make her very sleepy so for the most part she slept through. They did decide to lesson her dose of cyclosporine, this drug promotes engraftment. What they want to have happen is for Olivia to get a little of the GVHD (graft versus host disease)this could be anywhere from a headache, rash, diarrhea, or vomitting. The graft cells (Dave's marrow)would attack any possible leukemic cells left in Olivia's marrow. Also research results indicate that when a person has the GVHD the relapse rate is lessoned. She has not shown any signs of GVHD at all. It is such a fine line, wanting her to have some but not too much. Because she and Dave were so closely matched her body does not recognize his marrow as foreign and this probably why no GVHD. We will wait to see what happens we just changed her dose today so probably nothing until possibly next week. Who would think you would want your child to become sick. In this case a good thing. Anyway we won't be back in clinic until next Friday October 14 when Olivia will have only a spinal done. They will be treating her with Ara-C a pretty strong chemo drug, only in the CNS (central nervous system). We are scheduled early which is a good thing since Livs can't eat before hand.

This will be a long road to travel as we continue our journey. But as we all know Livee is such a fighter and our continued inspiration. I have no clue when I am going back to work. Things are still hanging right now. In a way I would like to return working but in another way not really. I feel so out of everything and in a different world. Everything will happen in time as He has plans for us.

Keep praying for the many children with cancer (the evil one). Families need compassion, support, and understanding please keep them in prayer.

Wednesday, October 5, 2005 10:38 AM CDT

We made it through Olivia's appointment yesterday. First we went to the peds clinic then to peds cardiology for an echocardiogram and also to x-ray. The best news is that all is well. The surgery she had in April to repair the PDA (patent ductus arterious) was successful. One less source to worry about from the infection stand point. She will no longer need to take antibiotics when she goes to the dentist etc... Of course she can't go there right now anyway but down the road. Also while there yesterday I had Steve take a look at Olivia's central line and he decided to put her on an oral antibiotic, she is less than thrilled about that one. Only for a week to clear the site infection. Livee slept in this morning so right now we are getting ready to take meds, have a bath, and a dressing change. This afternoon our friend Michelle will be coming over for a while. That's when I get to work. I still am not sure how this will all play out for getting appropriate care for Livs. I just need to be patient (not easy for me).

We are going to get outside and enjoy the beautiful weather. I think fall is so refreshing and a pretty time of year. I want to get over to the Quad Cities and enjoy the river view too. They had their Light the Night Walk last Friday night. I hope it was a huge success for them. I think I forgot to mention that they gave a free weekend at the Grand Harbor Resort in Dubuque. That will be so much fun for Livee once we can go. We will wait until she has her central line removed so we don't have to worry about it. Right now it looks like that may be around the end of the year sometime. If sooner that would be great. I better get busy. I will be adding more after our appointment tomorrow.

Monday, October 3, 2005 4:13 PM CDT

We have been gone and are just returning from Grandma's. I took Olivia down to Fairfield on Friday and then returned back here on Friday evening. I had a chance to see the football game on Saturday so I thought I would take advantage. The weather was perfect and the Hawks won this one. I made a day of it and had a great time. Friday night I said to Livs "I'm getting ready to take off " and she looks at me and said "Yeah just Grandma and I get to hang out now" she is Miss independent. The break was nice for both of us but of course I miss her when we are not together. Today we came back and Livee hung out with Michelle while I went and had my oil changed and did some other running.
Tomorrow Livee has an appointment with cardiology just a six month check after her surgery in April. I totally forgot about it until they called. Hopefully it won't take the whole morning. We go back again on Thursday for labs and Livee will get IVIG a blood product. I think it runs over 1-2 hours so I know we will be there a while. We did find out that the area around her line is infected and are treating it with bacitracin. We hope that will clear it up or she will have to take an oral antibiotic. I have talked to the Doctors about how long she will need her central line and it could be up to 6 months. If we can get it out sooner I know we will. It will be a matter of Olivia receiving more pokes. I have talked to her about it and she is thinking she would rather have the line out. Since that line has been in we have had problems with it. We will see.
Nothing much else happening, I don't know my return date to work yet. I am waiting for some answers on Olivia's coverage and that type of thing. It will be such a change to be going to work and not just hanging out with Livs. I will update as it unfolds. For now I will close.

Friday, September 30, 2005 8:41 AM CDT

Livee is still sleeping, I need to get her moving soon as her teacher is here at 9:30. Yesterday at clinic all of Olivia's numbers were in place. I am relieved as I am each time we get a good report. Her next procedure is scheduled for October 14 for a spinal/marrow. She will also receive an intrathical chemo treatment. I really wish she did not have to have them but AML has a history of showing its ugly self in the Central Nervous System (CNS) so this more preventative than anything. She will have 2 more treatments after that one in November and then again in December. We pray that will be it. Maybe at that point they will think about removing her central line. The sooner the better since is potentially a source for infection. She has had some drainage from the entry site this last week so they took a sample and will culture it. We have done 4 dressing changes to make sure the area stays clean. Not fun for her.

I may be taking Livs to Grandma and Grandpa's for the weekend. Since she can't go to the Haunted Corn Crib at Bloomsbury farm. We will find something to entertain ourselves. I might be going to the game a little break and some adult conversation might be the ticket. I have been extremely tired this last week. My brain just won't shut off and relax. But the truth is I have always been like that, it's just now I have extra info floating around.

I need to run. As usual thanks for keeping Olivia in your prayers.

Wednesday, September 28, 2005 5:10 PM CDT

What a great day for us. I am so thrilled and impressed with Olivia's two new teachers. The one gal Dori already teaches kindergarten at Lucas in the afternoons and will be with Livee in the mornings three days a week. The other gal Michelle I met through the U of I College of Education. Thank you to Daniel Clay. Michelle will be here every day various hours. I really like both of these special people. These two are giving up their own time to make a real difference in ours. I am very happy and delighted to have them. The hours I am not completely sure of yet, I am working with Option Care an Nursing Agency in Cedar Rapids, they provide us with Livee's supplies. I hope they can fill in the other hours we need. I may go back to work sooner then I thought. We will wait to see how it all works out. It is so comforting to have a plan in action and move forward. Most importantly Livee likes both Michelle and Dori too. They made my day.

Livee is hanging out being Miss independent, which she normally is. I am anxious to see what they say tomorrow at our clinic appointment, if they have any updates for us. I know at some point in October she will have another spinal/marrow. She also receives IVIG (a blood product) once a month in the clinic. I think her first dose since being discharged is October 6th. I really don't know how long she will need it. That goes along with her cyclosporine, this is an engraftment booster, I don't know how long she will need it either.
Once again thank all of you for being part of Light the Night last Saturday. If anyone wanted a T-shirt but did not get one please let me know. I will place another order soon.

Tuesday, September 27, 2005 11:10 AM CDT

Livee has been doing fine. We just have to watch the germs and be sure to wear a mask. She is pretty good about it but the one she must wear outside is hot for her. Sometimes you almost forget that she does not have an immune system yet. She is just like any other 6 year old, full of energy and always ready to go. We went to the park yesterday and she met some new kids, they played tag together. The one little girl was apprehensive about Olivia's mask, she just wasn't sure what to make of that. Sometimes it is a little awkward explaining why she must wear it that she is not contagious. I think children have the misconception that they can get sick from kids like Livee. Tomorrow Olivia starts school here at the house. Her teacher is Dori, the regular kindergarten teacher at Lucas. She will be here from 9:30 until 11:00 M-W-F. I think it will be great for Livs to start focusing on something positive and that she likes to do. I also have another gal that will start coming a few hours a week to tutor Livee. I don't know yet what hours she is available. Right now I am not ready to go back to work. Mentally it might be good for me but I need a little more time to adjust. I don't need to worry until around Thanksgiving time about returning. Hopefully by then I will have figured out who will be here and what hours. I hate the uncertainty of all of it. I like to have a set schedule with consistancy. I work better that way.
Once Livee gets her meds done we plan to run some errands and maybe get outside to enjoy the weather. I don't know what it is this time but Livee is very stubborn and determined to take her meds when she wants and usually not on time. The more I am on her about it the more she resists. She wears me out sometimes.
I will take a picure of Olivia's 2nd first day of school, I guess the 1st day would have been at UIHC. I will let you know how it goes tomorrow. More later.

Sunday, September 25, 2005 2:16 PM CDT

It was great to see all of you last night. I think the Light the Night Walk was successful and certainly fun. Olivia had a great time, leading the walk and flying around on her bike. She really did not seem to care much about anything but riding her bike. It was nice to finally meet some of you. It kind of caught me off guard when Ann handed me the microphone, I really don't remember for sure what I said. I feel like I did not have a chance to talk to some of you and I apologize for that. The time went quickly and I did not even get to see all of the nice things inside at the raffle. Hope to have a repeat next year with more people and more fun. Livee's T-shirts will still be available for anyone that would still like one. Just let me know.

We are hanging around today getting things done. I had done a dressing change yesterday on Livee's central line but just had to do another one today. Seems like it may be a little irritated and there was some goopy stuff that needed to be cleaned. She did fine with it. I can't wait for the day that the central line is removed. It will be several months from now. And of course the day she can quit taking meds, I am sure every parent in this situation feels the same. Never take for granite the little things and appreciate what you have.

I promise to update pictures soon. I have been so focused on other things. I need your little wheels to turn and help me find the appropriate person to stay with Livee so I can go back to work. I have a couple of leads but nothing for sure yet. We go back to clinic on Thursday so I will give everyone the scoop then if not before.

Saturday, September 24, 2005 9:54 AM CDT

Good Morning - Good Morning,
I was a little lazy yesterday and did not journal. Really nothing new to report. Which is a very good thing.

Ok all of you walkers and "Free to Fly" supporters what happened to our sunshine??? It will be great no matter what the weather. The good thing it won't be blazing hot. We are excited to see all of you this evening. Just to let you all know the event starts at 5:30 the actual walk is around 7:15 or so. They have a couple of radio stations that will be there, pizza, games, and other activities. Rumor has it that Spongebob will be there too. So for those of you with kids you can be there a little earlier if you wish. I now have more T-shirts available for $8.00 each. Mostly adult sizes Large and Medium and then a few of the various other sizes. Again if I don't have the size you want I can order it for you.
Our team is gathering at 6:45 at the southeast corner of the Hall of Fame building. If you get lost of don't know directions my cell # is 331-1942. We are due on stage at 7pm, I have not a clue what I will say but hopefully will come up with something.
Livee is doing great and full of energy. She has decided she wants to ride her bike to lead the way. She is pretty proud of her new wheels and wants everyone to see them. I guess it won't hurt anything to go along with this one. I am just thankful she is here ready, willing, and able to take part.
We are keeping all our hospital friends and families in our prayers. They need our prayers and support as much as anybody. By showing our support tonight maybe we are one step closer to "Cure", we all pray for this. This monster called cancer needs to be stopped now. I don't know of anyone that does not know of someone affected by cancer. There is too much and enough is enough. We can make a difference! Thanks to each and everyone for the many prayers and support you have shown us along the way. It truly does matter, and by keeping us sane we can be there for the most important reason "Livee". Let's watch our little butterfly spread her wings and be Free to Fly!!

See you tonight.

Thursday, September 22, 2005 8:54 PM CDT

Our day has been a fun day. Livee decided she wanted a new bicycle with her birthday money. We picked out her new bike today. Quite a bit bigger than her previous one, she rode around the block 3 times tonight. It will take a while for her to get used to this one. She still has training wheels and is a bit intimidated by the thought of taking them off. Once we are able to be out and ride some more I think she will feel more confident and want to take them off. Not being home the past two summers for the most part has put a damper on her riding skills. Oh well, she really trys to hard to keep up with the other kids. We were at the park today and she was playing with a couple of older girls and she was doing her darndest to do the things they were doing. It's hard for her to find her place and know that she is just like them. The truth of the matter is it is probably harder for me. In time it will all take care of itself. I am working with a couple of different departments at U of I to assure Olivia gets what she needs when I return to work. The funding just isn't there, I am a little disheartened though to know that the victims of Katrina etc.. are getting what they need no problem but as a tax payer for the state of Iowa I am struggling to get my child the assistance she needs so I can return to work. The system is so messed up and does not exactly encourage people to do the right thing. Anyway, upward and onward.

Today we went to the clinic and Livee's counts were fine. She seems a bit run down and is sleeping right now. She plays so hard and goes and goes. I think it will take more time for her body to adjust and be at full swing. It has only been 4 weeks since transplant. We are looking forward to Saturday night. Our family must be there by 6pm so please plan accordingly, whether you want to come here first or meet us at 6:45 at the U of I Hall of Fame building. Remember to be at the southeast corner of the building at 6:45 or so. We will lead the walk, as Livee fulfills her duty as the honored hero! Hope Hope for decent weather, there is a possiblity of rain, keep that in mind. I think it will be beautiful no matter what, we have one special "Survivor" to lead the way. We are so proud of her and the many others that have fought and survived cancer!!

God Bless each and everyone of there Heros!!!!!!!

Wednesday, September 21, 2005 1:03 PM CDT

Livee is in the Iowa City Gazette today in the community section. The gal Danielle did a pretty nice job on the article, she messed up by saying Olivia has lymphoma but the rest is pretty accurate.

We are pretty excited about Saturday night and hope to see alot of smiling faces. We will be there between 6 and 6:15, if anyone wants to join us early that would be fine. Otherwise be at the southeast corner of the building at 6:45 on the corner of Melrose Ave and Mormon Trek Blvd. Hopefully the weather will cooperate for us. What a way to get a little excercise and raise money for a "Cure", stop this monster disease in its tracks. Enough is enough and all of these kids deserve a break from this beast. Donations can be given at the time of the event, just think if everyone gave just $5 dollars how much we could give. It means so much to so many. One day a cure will be found and we can all say we helped.

Olivia is doing well, still fighting me on taking her meds on time. Obviously control for her, but why does she have to fight me on such an important issue. This is the worst she has been with her meds, a little more mature and wiser now. We have been looking at bicycles on line, she thinks she wants to spend some birthday money on a new bike. Whatever she wants to do, she certainly has many other things to entertain her. Like most of us we always want more. Today we went to the grocery store and then need to pick up the rest of our T-shirt order. I ordered some kids and small adult sizes, it is kind of hard to know for sure how many of each to get. I just took a guess and will order more as we need them. I need to get off line, I am expecting some phone calls.

More later-tomorrow we go to clinic I will update afterwards.

Monday, September 19, 2005 4:58 PM CDT

Livee has been playing and having fun all today. She entertained the reporter and camera guy from The Gazette. They were here around 1pm today to interview Livee and take pictures. The story will be in this Wednesday's Iowa City Gazette. I think the gal did a real nice job and took lots of notes. The story is in conjuction with the Light the Night Event this coming Saturday night. Don't forget anyone can join us!! Please meet at the southeast corner of the U of I Hall of Fame building at 6:45 pm. If you have questions call me at 338-8141. The building is located on the corner of Mormon Trek Blvd and Melrose Ave by the big 4-way intersection. Just look for Livee's "Free to Fly Team" banner. Hope to see you there. Also if you are interested in a T-shirt let me know the size, I will have them available at the event Saturday. Sorry for no picture yet.

We got another call from Steve at UIHC he said really good news, the cytogenectics show that there are 46XY (male chromosomes) definitely Dave's marrow at work. I have to pinch myself sometimes to assure that Livee's transplant took place. Everything has gone completely right for a change, she has not had any illness or other signs of GVHD (graft versus host disease). This can still happen anytime but if it doesn't happen it just doesn't. The Doctors say they have seen it all from none to very severe GVHD. I know that Olivia's body will take care of itself however she needs it to. Thank God for Livee!!!!!

Sunday, September 18, 2005 11:39 AM CDT

Olivia just woke up, what a sleepy head. I think she is just catching up from an overdue nap. Anyway she is acting fine. Last night we got a phone call around 8:30 pm it was Steve the PA from UIHC. He wanted to let us know that the suspect white cells are nothing to worry about and after further examine all looks fine. I told him he just made my night. For now no need to worry and we can totally enjoy a beautiful day together.
The T-shirts seem to be a big hit, they are not just for the Light the Night Walk but for anytime. You don't have to participate you can order anytime. Thought I would clarify. I think after we talk with the gal from the Gazette Monday Livee and I may take off and visit Grandma or do something fun. I am starting to get cabin fever and new scenery would be great. Livee does not have to visit the clinic until Thursday am, so a little break. If you want visit the KHAK web page and you can view pictures of the radiothon. They did a superb job and raised around 182,000 dollars. Mondy that will be well spent to help families cope with all of the hospital time.
Other news Olivia has been approved to have homebound schooling. Right now it will be only 4-5 hours a week, so not much but the one on one will be great. I think it will help her to adjust once she actually gets in school. I have not found a solution yet for someone to care for Livee when I return to work. I am on family medical leave until 11/20/05, then I must return to keep things rolling. Family medical leave does not pay any bills. Here I thought my taxes this year would be almost the full year, but not in the plans huh?? Last year I worked approx 4 months only, I about cryed when we had taxes done. I seem to go backwards and never get ahead. The main priority is Livee and her health. I am so thankful to have her and know we will have many years of fun together.
Thank you for the many prayers and thoughts sent our way.

Saturday, September 17, 2005 4:13 PM CDT

I apologize for the delay. I updated last evening but I don't seem to know what happened to it. So here goes.
Yesterday was a very long and exhausting day. Livee slept in until 10am which worked out pretty well. She could not eat of course so sleeping helped to pass the time away. After she was up and around we went to City Park and fed the ducks, walked around the little train track, and just enjoyed the weather. We got over to UIHC around noon and they sent us right up to floor 5. We had to wait a while after that but finally got things started. Olivia did real well going under but was pretty on edge when she woke up. I have never seen her so upset after the procedure. I just hate that she has to go through this time and time again, it is all so unfair. I admire her so much for being such a fighter.
The preliminary results showed really good news for the most part. Dave's marrow is in fact taking over and there was a high percentage of them. This is exactly what we had prayed for. The results also showed some white cells in her spinal fluid, this is not what we want. They did not think they are the blast cells (the immature white cells) but are still a bit concerned about them. We will know more on Monday after further examine of the cells. The Doctor said approx. 6 of these cells were there but he also said there was plenty of red cells there too. This is a good thing. It is all so complex. I am trying not to worry but of course can't get it out of my mind. So today I have been cleaning and trying to stay busy. I think tomorrow I will try to be outside and enjoy the weather. Olivia is kind of tired today and has been hanging out watching TV and playing.
Our neighbor around the corner gave Chocolate and overdue haircut and nail trim. She looks so cute and much younger. Ha!! Dave went to the game, a much deserved break for him. He has been working working working and that's about it.

If this ends up to be a duplicate I apologize. Take Care!

Friday, September 16, 2005 9:01 PM CDT

I hope I can make sense while writing this. I am pretty much exhausted from a very long day. This morning Olivia slept in until around 10am, which I thought would help pass the time away for her since she could not eat. Once she was up and around we decided to go to City Park and feed the ducks. That was fun and a nice way to avoid thinking about her appointment and all. We took a drive out by the reservoir and then got to the hospital around noon. They sent us right up to 5th floor and then we had to go through the old routine of questions any allergies and blah blah blah. Of course then we had to wait. Once things got started Olivia did real well going under but coming out of was a little rough for her. She was rather irritated and a bit on edge. We finally got to recovery about 3pm or so, she did ok but was still a little spacey.
The preliminary results for her marrow looked great, she does in fact show Dave's marrow taking over and it indicated a high number from what they had. That is exactly what we wanted, however in her CNS (central nervous system) the results showed some approx. 6 white cells but over 300 red. The red is good but the other 6 are suspect, they did not show blast cells which we don't want but are of concern. Around 5 is considered ok and normal. Monday we will know more after further examine of these cells. Pray for good results on this.
On a brighter note Olivia's T-shirts are done. I am very happy with the way they turned out. Right now I have M-L-XL
available but will have SM and kid sizes next week. They are selling for $8.00 each. I will try to get a picture of them up on the web soon. Just give me a shout if you are interested. Also next Saturday anyone that wishes to join us for the Light the Night Event please meet us at the U of I Hall of Fame building on the SouthEast Corner at 6:45 or so. Or call me if something else would work out better. We have to be there for sure at 7pm on stage I believe. We hope to see alot of your smiling faces. Gotta go-more later.

Thursday, September 15, 2005 5:27 PM CDT

We made it home from Livee's appointment earlier today. Her lab results showed everything looked fine. All of her numbers are in place for this stage of the process. We will be back there tomorrow about noon or so, her spinal/marrow are scheduled for 1:45. We were hoping they could move that time up but it did not happen. We will visit the clinic first and then up to 5th floor. Olivia will plug her nose like she always does. We will find out what is going on with Livee's marrow. I am optimistic that all will be fine, it's the anticipation that gets you. They will do a chromosone check and that will tell us how much of Dave's marrow has kicked in. I will give you all of the important info once I know.

So as far as the radiothon you probably noticed that I was not on at the time I thought. Our clinic appointment took longer then what we thought. The Brain and the Bear took a break from 10 - 2 so I went back for my interview and was on around 2:10pm. The radiothon is a bit draining but I do it for all of the kids that need our support. I would have had Livee talk but I did want to expose her to any unneccesary germs. Also while at the hospital I talked with a gal from the Gazette, that will be doing a feature story on Olivia for next week. Her story is in conjunction with the Light the Night Event. I will let you know which day the story will appear. I have to talk with her again on Monday.
Thanks for keeping Olivia in your prayers we hope this is her miracle in motion.

Wednesday, September 14, 2005 12:29 AM CDT

Olivia had yet another birthday surprise from the neighbor boys. They brought her a gift and some cupcakes last night. I also forgot to mention that when we were in clinic on Monday Livee had 2 big happy birthday signs and some gifts waiting for her. Seems like Christmas everyday for her, but she so deserves all of it.
My other email address besides my hotmail account is "freetofly@mcleodusa.net" not a bad deal through my phone company. I figured this way just one bill, less for me to keep track of. I am still trying to sort through the many many papers and prioritize this mess. You would think I had all of the time in the world but some how that is just not the case.
I am getting pretty pumped about the Light the Night Event. I have had very positive response and will have a pretty good team to help us support the cause. There is still time to join us if you would like. I can just write you in and take donations that evening. I figure make it simple and easy for all involved. Give me a call or shoot me an email.
Olivia is watching cartoons and supposed to be taking her pills. We have had quite the struggle with that this time. She is one determined little girl and is too smart for her own britches. I better get a move on-more later.

Tuesday, September 13, 2005 4:00 PM CDT

Are you listening, big news I finally broke down and now have internet service. Truth is I just could not take the suspense of waiting to read Livee's web page and not being able to update whenever the urge struck. So I am way behind the times I know. Do you like the new web background etc... I need to send a special thank you to Brenda!!!

Livee had a wonderful birthday!!! We celebrated Saturday with a few family members. Yesterday Livee and I went to the movie "Charlie and the Chocolate Factory" she loved it. It was perfect we were the only ones in there. Last night Dave made Liv's favorite dinner for her. Oh yeah, she had an appointment at the clinic too. Her numbers were pretty good white count was 3.4 and neutrophils were 3200 anything over 1000 is what we want. We visit again on Thursday for labs and then back on Friday for her spinal/marrow aspirate. We are not scheduled Friday until 1:45, the down side of that is the results probably won't be known until Monday. Also Liv's can't eat anything before the procedure. We are hoping they can bump the time up for us.

There is a Radiothon going on right now on KHAK 98.1, this is in conjunction with Childrens Miracle Network. If you have a chance listen to the many storie that families have to share. We will be interviewed around 9:15 - 9:30 am on Thursday. I know they have been running an a previous interview that I had done. Sometimes they use their file coverage which may not be the most recent information. None the less this is a wonderful cause.

I will update soon. Keep these children in your prayers.

Saturday, September 10, 2005 7:35 PM CDT

We are so glad to be home, we are still going through an adjustment period. It just takes time for it to all sink in. Olivia and I went to the clinic on Friday her numbers were pretty good. We just have to keep an extra close eye on everything. She did need to have a GCSF shot last night, this will boost her white count which was 1.5 at her appointment. We go again on Monday for her next clinic appointment and will find out where her numbers are.

Today we had a great birthday gathering with family. Olivia had a wonderful time and was a very happy girl. She received her Krabby Patty Grill, and so many other nice gifts. Cake and Ice Cream for everyone of course. She is very worn out and having a nap right now. She did complain of a headache but does not have a fever. I think with everyone here and all of the excitement she is just plain tuckered out. We can expect that for a while I guess. I am pretty nervous about this Friday when Olivia has her spinal/marrow aspirite. I just want good results that are clear and show that Dave's marrow is doing its thing. I am sure it will all be fine but yet I am nervous. Please say an extra prayer for Livee.

We are so proud of Olivia and will enjoy celebrating her 6th birthday on Monday. Thank God for Livee!!!!

Wednesday, September 7, 2005 11:23 AM CDT

Olivia's journey has reached a milestone, we are going home on day 20 post transplant. Olivia has been given a second chance and she can start her new life "cancer free". How awesome!!!
Olivia continues to be determined and strong through her fight. She will handle anything that comes her way. To think she will only be 6 years old this Monday, she has endured more than most of us will in a lifetime. So many children have had to go down this path less traveled. It is so unfair and yet we can't change it. We continue to pray for and support all of them.
Olivia "Honored Hero" for the Leukemia & Lymphoma Society. If you are interested in "Light the Night" call me (319) 338-8141 and join us on Livee's "Free to Fly" team. The event is held September 24 at U of I Hall of Fame on Melrose & Morman Trek blvd start time 7:30. Contact me for questions, donations can be made to me or at the event. Please come out and join us for fun and to support this worth while cause.
We are coming back to clinic on Friday the first of many visits twice a week for a while. Olivia's next scheduled visit is September 16th she will have a spinal and marrow aspirate. We pray for all clear, and that Dave's marrow has taken over. This will be a day filled with emotions, pray- pray-pray for Olivia. Each day my head if filled with so many thoughts and emotions run wild, no matter what Livee knows we are there for her.
Keep watching updates and new pictures as they may appear at any time. Again we sincerely want to say thank you for being there during this "Olivia's journey".

Tuesday, September 6, 2005 7:45 PM CDT

We are going home, yes that's right we get to go home tomorrow day 20 post transplant. Olivia is doing so well they feel comfortable sending us home. We will be visiting the clinic twice a week for a while. And of course taking one day at a time, and watching her like a hawk. Fevers, mouth sores, rashes, lots of bruising, or bleeding are most of the signs we will watch for. We are pretty much used to all of it but now after transplant it will be a bit different. Mostly having Olivia keep a mask on at all times unless we are inside at home. That may be a challenge, the things are hot and not the most comfortable. Olivia will be taking just one additional med from this time last year and that is a anti-rejection capsule. She is totally amazing me with swallowing her meds instead of crushing them and putting them with cherry syrup. We are so so proud of her.

I will update tomorrow at some point. We will be at the hospital most of the day. I plan to update pictures and info also.

God has worked his miracles for us and we are so blessed. Thank you to everyone that has stopped by, called, emailed, or sent something for Livee. All of these things help us to get through each day.
We can't wait to celebrate Olivia's 6th birthday on Monday. It will be a very special event for all of us.

Tuesday, September 6, 2005 7:45 PM CDT

Monday, September 5, 2005 8:23 PM CDT

Just a quick update. Olivia is doing fine actually being rather silly. She quite doing the GCSF shots last night. Her white count today was 3.1 we expected a drop in her count now she will level off once again. The Doctor said the morning that more than likely we will be going home by the weekend. If Olivia holds her own on all of her numbers.

I need to go Olivia's dinner arrived so I will cut this short and add more tomorrow.

Sunday, September 4, 2005 8:53 PM CDT

Hello, Really good news again today Olivia's white count was 6.1 this morning and her neutrophils (the guys that help fight infection)are up too. That means no shot tonight, she is soooo disappointed, not. The Doctor this morning thought that if all stays good and fine we will probably be home by next weekend. We have to make sure she holds her own after stopping her shot. She more than likely will still get platelets, they are slower to increase after chemo/radiation than the rest of your blood components.
This is very common and nothing to worry about. Also the white count will probably take a bit of a dip also. Almost record time getting out of here after transplant. One other child was out on day 17 post transplant. But whose counting the main focus is that she is doing well and has all the right stuff.
Thanks for the bracelets Theresa Baker and again the mystery Build-A-Bear gift giver. Olivia really enjoys the dress up thing with the Bears. That will probably be a birthday item for her. She is finally going to get the "Krabby Patty Maker" Spongebob Square Pants fame. If you remember she had asked for this at Christmas but the item I purchased on Ebay was never delivered. I just have not had time to deal with it and see why they never sent it. A couple of emails but no response (the crooks)anyway.

A special thank you to my parents for putting on their annual garage sale and making money to help with expenses. They are the best. We Love You!!!! I need to run we have a dressing change and a couple of meds. No shot though, Yahoo!

Saturday, September 3, 2005 6:07 PM CDT

Today has been pretty uneventful just the way we like it. Olivia is now at 3.0 for her white count. Just as we had hoped a nice increase from 1.1, tomorrow who knows what her number might be. She will probably have one or two more GCSF shots left. Olivia started taking a new medicine by mouth just last night. She has 3 capsules in the morning and 3 capsules at night along with her other 2 each time. The capsules replace one of her medicines she was getting through her IV. In order to get out of here she needs to take this one by mouth at a specific time. That can be the hard part around 8am and 8pm are the scheduled times. She has still been quite the night owl so I have to wake her up to do this med if needed. Once we get home we will come into the clinic either 2 or 3 times a week. That sounds like a whole lot of fun huh??

Olivia is pretty excited about her 6th birthday party. Sounds like we may be home for it. I better get busy on this the time just slips away and the 12th is just around the corner. Livee is glad that she won't have school until Tuesday, she loves it but it can be more fun to just play.

I went to a tailgator earlier for a while, no biggie. It was nice to get outside for a bit. Dave just arrived and brought some dinner so we should go eat. Olivia is playing on the other computer in the playroom. I will add more later once I know more.

Friday, September 2, 2005 5:21 PM CDT

Finally here I am to update what's going on. Olivia is doing better than expected. Her white count is now 1.9 a wonderful thing to see. She has been a very busy girl today. The Doctors said that we could leave the unit today, so we went up to the library for a while. It was wonderful for Olivia to see some new surroundings. My neighbor Julie met us there and then we all came back down to the bone marrow unit. When we were coming back down we say Lisa Bluder and a couple of her assistance they were looking for our neighbor Doug. So we directed them and ended up talking with all of them for quite sometime. Olivia played basketball with Jan and Jennifer the assistance. They were pretty impressed with her shooting ability. Olivia has a special invitation to a women's basketball game and sit right behind Lisa and the players. Lisa gave me a card with her number and said call anytime. So something to do this Winter at some point.

The Doctors said that more than likely we will get to go home early next week. They are very pleased with Olivia's quick recovery. We still have obstacles ahead and pray that things continue to move in the right direction. So far no GVHD or mucositis (mouth sores). GVHD can usually appear within the first three months post transplant. The list really goes on and on of things that can happen but honestly though I don't put a whole lot of energy into thinking about those things. I focus on what we have going on and how Olivia responds and how she is doing. One day at a time is the best way.

Olivia has been enjoying her new build-a-bear our neighbor bought 2 new outfits and some undies for her bears. Also Dave brought from home the other bears and clothes that Olivia already had. She loves to pretend with them that they are her buddies, or take them to school, or dress them up. Alot of fun for her to kind of fill a void.

I hope to step out for a bit tomorrow and see some friends at a tailgator. It would be real nice to have some adult conversation. One of Olivia's new Dance Marathon friends said she would love to come up and hang out so since Olivia is doing so well I will take her up on the offer. Go Hawks!!

I need to get some dinner ordered, keep checking in on Livee she loves to hear from all of you.

Thursday, September 1, 2005 4:39 PM CDT

Another update for the day. Olivia has had a great day either playing or at school. Right now we are in the playroom she is on the other computer singing to herself about a palm tree. I wish I had a recorder, it is wonderful to hear her so happy.
I was just talking to Steve (the physicians assistant for the bone marrow unit) he was saying that tomorrow if we wanted to get off the unit we could. Olivia included since her counts look good and things seem to be going so well. If we do we will go outside I think. She will be wearing a mask which is something we will have to get used to for a long time. He is even talking discharge in a few days. We will take this one day at a time still. I don't want to jinks ourselves at all.
Earlier I had my radio interview around 12:25 with Y105 it went pretty smoothly. Kind of uncomfortable because you have no idea of what they will be asking you. The main idea though is to get people to donate to CMN Children's Miracle Network. The local radiothon will be September 13th in the lobby at UIHC with KHAK. The Brain and The Bear are the hosts. I more than likely will do an interview for that as well.
I about gave myself a heart attack earlier. Olivia was going potty and we had her IV pole of course. Well the tubing that attaches from her to the pole is sometimes quite long depending on how they have it connected. Anyway part of the tubing was lying on the floor and I stepped on it and broke the valve off. Instantly I went to get the nurse in the mean time Olivia is screaming "Mom my blood is coming out of the line", so she was smart enough to clamp her central line off which stopped anymore blood from coming out. Amy our nurse came in and changed out the tubing and flushed her line so all was better. Now that was unnerving to say the least. I sure am glad Olivia is so smart and took care of everything for me.
Livee's web page update will be sometime this weekend. I need to go assist her right now.

Thursday, September 1, 2005 9:42 AM CDT

Great news already this morning. Olivia is at 1.1 on her white count, this is very good news. Normal range is 4.0 - 10.3 we still have a ways to go but usually once the count starts to climb it will keep going in that direction. We still don't know if engraftment has taken place. Once they stop having her do the GCSF shot we can tell more if in fact it is her body making it's own marrow and all of the other blood components. Also on September 16 we are scheduled for a spinal/marrow aspirate. We hope to see all is clear and all cancer cells have been irradicated. That is what we pray to see that day.

The Radio interview will today on Y105 @ 12:20 or so. This is a Dubuque radio station with Chris and Rachel. It is a follow up from 2 previous interviews. The Children's Miracle Network puts on this radiothon each year to raise money for UIHC and to help families with necessities while they have to stay here during their childs stay. They do a wonderful job and as one of these family members I can say we truly appreciate all that is done.

I will add more later Olivia wants to go for a walk right now. Keep praying for the many families that need comfort and hope.

Wednesday, August 31, 2005 1:17 PM CDT

Hello Hello, Finally a chance to sit down and update. Let's see where did I leave off. For starters Olivia was at .4 yesterday on her white count and today is at .8 Yee Haa !!!
Another step in the right direction. She is loving her time at school and of course activity is a must. We are just got done with her bath for today and now are going to do her dressing change. She is has been putting me off by playing and being busy.

Please keep both of our hospital neighbors in your prayers. The one boy (Doug) has ALL Leukemia and had a stem cell transplant last Friday. He has had some challenges and needs some prayers. Our other little friend is Dawson and just received his stem cell transplant today. He has neuroblastoma another rotten cancer. There are just too many that have to deal with this. Everyday can be a challenge and filled with many uncertainties. As the saying goes don't sweat the small stuff, let it go.

I am pretty excited to announce Olivia's website will be seeing some changes. I don't have my T-shirt plan in order yet. I would encourage any of you that want to help be part of the cure to join "Livee's Free to Fly Team" for the Light the Night Walk, September 24. We will just make our own team and anyone can participate. As I know more info I will pass it on. Olivia is the honored hero and we are so proud of her.

I need to go now I have a meeting soon. Tomorrow I will be on the radio at 2:20 on Y105 Dubuque. Thanks for the many prayers and thoughts. A special Thank You to the person/persons that sent Olivia the berry cute Build-A-Bear. She loves it. Pretty sneaky!!!

Monday, August 29, 2005 5:58 PM CDT

Great surprise today, Olivia's white count made it to .3 a step in the right direction. We of course hope tomorrow will bring yet a higher number. Today Olivia is done with a chemo that she has been receiving since transplant. It is supposed to help keep away the GVHD (graft versus host disease), remember we hope to get a little of this but try to avoid the full blown GVHD. A very fine line to walk. So far no signs of any GVHD, it could happen anytime today is only day 11 post transplant. We know what ever is coming our way we will handle. Olivia is one strong cookie.

I have been working on my game plan for when we return home. Olivia will have to be home for some time but I will need to return to work around Thanksgiving time. I am covered up to that point. The school will provide some tutoring but only 3 days a week for a couple of hours each day. So I am trying to come up with a plan for someone to be with Olivia so I can work. If I have to quit work I will but that would be only if another alternative does not surface. Of course the person would have to love kids and be very healthy and clean. Preferably a retired nurse, dream on huh? We will see when the time comes you just never know who might turn up for us.

I am working on getting Olivia to the bathtub, she is not to willing at this point because she is playing a game on the other computer. She is to have a bath everyday to keep as clean as possible and as germ free as possible. I will update more tomorrow as things unfold. Check out the new pictures.

Sunday, August 28, 2005 10:24 PM CDT

We are now at day number 10 post transplant. We take one day at a time. Olivia's white count was not behaving and is .1 today she will once again receive platelets early Monday morning. This is pretty common for this stage of the process. When her counts recover all will turn around.

I have yet to see Olivia's promo commercial, I need to watch more TV. Olivia is playing a game on Playstation 2 she really gets into it. She has still maintained her appetite again wanting to eat steak. Tonight she had Outback Steakhouse, my brother (Ron) and sister-in-law (Linda) from Davenport came over and spoiled all of us. We sure enjoy the company but are pretty cautious about visitors. We just can't afford to be to careful. The road ahead of us will still be bumpy and long. We don't need to add to it for sure.

This week Olivia will of course have school and many activities to occupy her time. I have an live interview on Y105 Dubuque this Thursday, in conjunction with Children's Miracle Network. It will be live, they have been following our story for a while now. I believe the time of the is 2:25 or so. They are really nice people and it helps to get people donating to CMN. On Wednesday evening I have a meeting with one of the Doctors and a panel to talk about family relations with UIHC. It should be interesting to see what they have to say or questions they have for me. Once again maybe I will find some time to update pictures on here. You would think I have all the time in the world but that really is not the case. Anyone that has spent time up here knows how that goes. Somehow it's always something popping up and before you know it your day is gone.

You may have noticed that I added some information. An account has been set up for Olivia at Hills Bank. See above for info. So many people have asked what they can do etc..
We appreciate your thoughts and prayers for Olivia. She is our inspiration and always will be.

Saturday, August 27, 2005 11:29 PM CDT

I just typed a whole darn page and it disappeared so here goes again.

Olivia is watching cartoons and eating steak right now. That's my girl, who cares what time of day of night as long as she eats. For some reason she has taken a liking to steak since all of this began. I guess she has expensive taste, her Aunt Linda started spoiling her a while ago by bringing Olivia Red Lobster which included steak and shrimp. Dave was home earlier and grilled the steak and made salad for Olivia. She deserves to be spoiled occasionally ok everyday. Actually this is the first time she has had any steak since we have been in this time.

Olivia is still hanging on to that .2 for her white count. We hope tomorrow to see an increase of some kind .3 or .4 anything higher than .2 would be wonderful. It will happen I am just impatient. Now is the time to trust that God will give us the strength and patience to get through these upcoming weeks. This may be my test, by nature I like to get to the point and see results now. I did go home for a bit today but did not find it to be relaxing at all. I find myself wishing we could be back living the normal life like everyone else. I think I am better off just staying put at UIHC so I don't see what we are missing. I know in time we will get there.

I better get some shut eye now. More tomorrow. Thank you for keeping Olivia in your prayers.

Friday, August 26, 2005 5:26 PM CDT

Olivia and are in the playroom. She is on one computer and I'm on the other. She seems to be getting along just fine. From about day 7 thru day 21 or so post transplant is when they say we could see a possible low grade fever or any of the other side effects. So far no mouth sores or anything else for that matter. The only thing different are some pretty healthy amounts of output (we will say). This can be a sign of graft versus host disease. They have not said one way or the other, remember we do want a little of the disease but no full blown. Interesting how that all works. I imagine her body is working really hard to except her new found friend and trying to decide what to do with it. Let's pray that it plays well with others. It is all so scary and the unknown can get the best of a person. I choose not to worry too much about things that may not even happen. It takes way to much energy.

My parents did come for a visit today. That was really nice for them to be able to see her. My dad and I went to my house to dry my laundry, we went to the bank, and I placed an order for some T-shirts. I am pretty excited about them, the design I think will be kind of neat. I can't tell you yet. Olivia and mom stayed and went to school together. After they went to school they had an activity with Kathy. They made a stone for Olivia's garden out of tiles. I can't wait to see it. I am so glad she gets to experience all of these fun things while we are here. This hospital can be a real drag if you let it. My goal is to keep her focused on positive as much as possible. Things go so much better that way. She is letting us do her shot without a complaint now. I believe her white count is .2 again today. It takes time for those cells to make up their mind I guess.

Keep praying for Olivia and all of the many others going through this cancer hell. God Bless.

Thursday, August 25, 2005 7:14 PM CDT

We made it to day number 7, one week. Olivia's white count is .2 at least it is not going down. She did however receive platelets early this morning. She was sleeping and did not mind a bit. Lately she has been such a night owl. Today she did not eat a whole lot but Dave is on his way and bringing her some food.

They asked up to try a new computer that is to be more user friendly. A bit simplified which is a good thing for me. We don't even have internet at home, an extra expense that we don't need right now. Maybe I can finally learn on this one some of the fun things like adding more pictures etc... Also Olivia will be one of the first children to be in a program that allows her to be in her classroom via satellite. She can be there without being there. Pretty cool, they intend to use this for all of the kids up here that can't be in their classroom. Kids come from all over and it would be great for them to feel like part of their class. Just like Olivia, Kathy and I are working out the best way to handle this for Olivia. We want to assure that she will not feel singled out or awkward about this. I want her to be part of her class and see some of her classmates be a little familiar with all of it. I will let you know when this happens.

Dave found an envelope in our mailbox yesterday and we both want to say Thank You to the anonymous person/persons involved. That is so generous and thoughtful of you. The many acts of kindness big or small mean so much during this trying time.

Olivia's KCRG promo is now airing. I have yet to see it but many people have told me they have. This is to promote the Light the Night Walk which will be held September 24th. The Leukemia & Lymphoma Society locally sponsors and is responsible for the whole event. I hope to get a team put together to represent Olivia. I have not really had too much time to put into it. One way or another I will be there for her. Please remember all of the other families up here that are fighting their own battles with this rotten cancer. Keep them in your prayers along with Olivia.

I need to go for now, watch for photo updates. (hopefully)

Wednesday, August 24, 2005 4:54 PM CDT

Day 6 has arrived, and Olivia has so far done just great. Her white count is .2 so going in the right direction. I am hoping the trend continues this way. Just think tomorrow will be one week Yipee!!! We are all very pleased with her progress, this morning the Doctors on rounds said she is their "Star".
Did you check out the new photos, Olivia has her eyes half shut in one. I will update with more soon. Our new neighbors in Room 87 helped me with the update. Thank you to Kelli.
Dave is getting along fine, he still has bruises but I am sure they will subside. One of our friends Greg is playing on the computer with Olivia right now. They kicked me out so here I am. I should get back though, I think he has class tonight.
We appreciate the prayers for Olivia each and every one.
Thanks.

Tuesday, August 23, 2005 8:11 PM CDT

Officially day 5 post transplant. Today was pretty uneventful. Olivia had activity this morning, she and Kathy made chocolate chip cookies. They were a hit with all of the staff. This afternoon Olivia started her first day of school. She read a couple of books and did a few worksheets. I am so glad she likes to read and learn. All day I have been trying to get her to eat something and drink something. The complete opposite of the last couple of days. Tonight she finally ate some pasta salad and shrimp. I made the pasta in the microwave up here and Dave made the shrimp at home. It takes quite a while to boil that much water in the microwave. But hey I learned that it can be done.

I went up to the library today and picked out 4 movies for Olivia to watch. Up until now we have not really been watching much TV or watched any movies. It is kind of nice they will even deliver whatever movies or books you want and pick it up from us. You just can't beat that. We start giving the GCSF shot tonight (this boost the white count) which today she is at .1 . She is talking about the shot right now and saying I am not going to get riled up or even worry about it. It is just one quick poke in my leg and sometimes a little blood. Then you know what happens once that new marrow kicks in bam the old rotten marrow is out of here. I love to listen to her perspective on this and how she feels about it. Olivia talks so adult like most of the time. I have to remind myself she is only going to be 6. She has decided on a theme for her birthday party Tweety and Sylvester are the winners. Now that I know I can start thinking about it. Who knows maybe we will be home by September 12th. Time will tell what is in store.

We have much to get done so I need to go for now. It is so nice to get all of the emails and visits to Olivia's web page. I try to read them to her and let her know how special she is to all of you and people are thinking of her. More tomorrow.

Monday, August 22, 2005 9:39 PM CDT

Olivia has had a good day. She is playing on the computer having a great time. She found some dance tunes so she has been dancing and playing. I stepped into the education room to update. All day has been pretty uneventful and we like it that way. Olivia's white count is still .2 today. A couple of times Olivia said her tummy felt weird but after going to the bathroom things were better. We just want everything to keep flowing input = output. Boring yes but just what we want. Tomorrow will be only day 5 post transplant, seems like it has been longer. Wishful thinking on my part. They really don't expect to see anything much until days 7-21 usually. They can get a better idea of her body excepting the new marrow and all of the rest. I won't go into details until I know more.
Tomorrow Olivia will start school in the afternoon. Her teacher Sue came by to say Hi today. Olivia can't wait to go to school. I plan to take her picture and all of the usual first day fun. Right now I need to get back to the room. Please keep Olivia in your prayers. We know the Angels are watching over her.

Sunday, August 21, 2005 5:01 PM CDT

Olivia and I are in our usual spot, the playroom. Olivia is reading a coloring book and then intends to color in it. Olivia will start school tomorrow just like the rest of her kindergarten class only she will start here at UIHC. They have a classroom and an education coordinator with volunteers to help out. I am not sure each day how long she will have class. When she was first diagnosed she had one on one pre-school, at that point she was doing 2nd grade material. I will be curious to know what level she is now. It will be so good for her to learn and excel at her level.

Today Olivia's white count is .2 the rest of her numbers are holding their own. The low count does not seem to be slowing her down as of yet. Right now we just need to be careful of the germ factor, until she rebuilds her white count including the neutrophils, (these are the guys that fight off infection). After her white count and other numbers are back to normal we will be a little less cautious. Olivia has been this road before and will prevail again. We will start her GCSF (helps rebuild the white count) shots again later this week. She gets one shot each evening in her leg, she chooses which leg we start with and then we alternate each night. She has done so much better with this. I give the shot and Dad helps pinch her leg where the needle goes in.

The Doctor this morning said hope for a boring day, meaning uneventful for Olivia. That is what we like to see also. When we came back to the bone marrow unit there was just one other family. There are 5 rooms total in the unit and as of tomorrow they will all be full. Starting the end of this month the whole front portion of 3JCW will be demolished and contruction will begin for a new unit. With the exception of three newer rooms outside the double doors, everything else will be gone. We are supposed to have a complete seperate hallway entrance back to this unit. Let's hope they have figured out a way to make that happen. We certainly don't need dust etc.. floating back to this unit even though it is behind a sealed double door. It should be interesting once it starts also we hope the noise level will be at a minimum.

Dave is doing much better today. He has been walking to keep loosened up. He is going to work tomorrow, let's hope it is not to soon. Olivia and I will hang out on Monday and find our own entertainment. The child life crew will help with that. I better end this here.

We appreciate the many kind words and prayers for Olivia!!

Saturday, August 20, 2005 6:27 PM CDT

Today has been a good day for us. Olivia has been playing either here in our room or in the playroom. The computer in there is real nice so she plays games in there. She also had a child life friend come and play with her. Right now she is playing some game on playstation.

I am so happy she seems to be doing so well. Her white count today was .4 and will drop to 0 which is expected. Then we will work to rebuild her back up to normal counts. She has to bottom out before we can boost her back up. Strange how that works. So far the rotten mouth sore demons have kept their distance. Let's pray that continues. We make sure she knows how very important her mouth cares are every day. I am sure she is sick of hearing that from us. Olivia started taking pills now instead of us crushing them and putting them in cherry syrup. The meds are very bitter so just swallowing them is a better option she finally decided. In most situations once Olivia makes up her mind she will follow through, it just has to be her idea. She has done so much better on her weekly dressing changes and now taking her medication. We try to have IV meds whenever possible.

Dave is a little bit sore today and has been napping off and on. After he takes his medicines he gets a little dizzy. It sure is a good thing I have my health to be able to help both Dave and Olivia.

I need to go, more later.

Friday, August 19, 2005 9:39 AM CDT

So So sorry but I did update last night after transplant and it failed to go through for some reason.

Olivia's transplant took place around 6pm last night. One small little IV fluid bag and that was it. The bag of hope for us the miracle we hope. To be honest it was a little strange. All day long Olivia had a pretty normal day business as usual. Then about 15 minutes before the Doctors came in for the transplant the nurse was to get her ready to go. That consisted of a double dose of benedryl, tylenol, and a couple of other meds. What happened was Olivia was very anxious and knew this was about to take place. She got a bad headache and was pretty upset. She was overwhelmed I believe with everything and she got sick. Her blood pressure was high too, this scared me somewhat because I was not sure what was going on. The Doctors proceeded forward once they felt Olivia was doing ok. I think it was overload for her. All day long people had been talking about transplant day and making a huge deal about it but then on the other hand we were telling her that is really isn't any big deal. I am sure the mixed messages were confusing for her. She has had so much taking place.
After the actual tranplant Olivia rested for a while and seemed to be doing fine. In fact we were up until 1pm she wanted to eat and eat and watch TV. We will have to work on that schedule for sure.
Dave is doing pretty good, the main thing for him is to keep moving so he doesn't get stiff and sore. He will return to work on Monday.
The guardian angel's were with us yesterday watching over all of us. We are very blessed that not only did we have those angels but also Olivia's angel on earth, her Dad.
Today is indeed a new beginning and will make the most of every day.
We appreciate all of the many prayers and thoughts sent our way it means so much. Please continue to pray for Olivia.

Friday, August 19, 2005 9:39 AM CDT

Thursday, August 18, 2005 5:29 PM CDT

It is almost 5:30 now, Dave just got back to the room and is doing fine. We are anxiously awaiting for Olivia's part to begin. It will be happening around 6pm. She is doing awesome as well, she has been playing all day.
They had a day of transplant party around 1pm. It was fun for her she really enjoyed it. Olivia also enjoyed a great lunch provided by the Grosclaude family. We want to say a special thank you to them.
I need to run right now, I will be adding more later.

Thursday, August 18, 2005 5:29 PM CDT

Thursday, August 18, 2005 10:28 AM CDT

Olivia will be reborn as of today the first day of the rest of her life. The gift of life she has been given from God, Olivia's Dad her Angel on Earth. We are truly blessed.

We are hanging out and Olivia is playing with Kathy. So far Olivia has not been sick just a bit of tummy pain occasionally. We are trying to be very vigilant in having her do her mouth cares. The mouth sores are pretty nasty from what we have heard, usually the kids that get them have alot of morphine and are put on CVN/lipids for nutrition. We want to avoid any of this if possible. Olivia will have a full day. Some lunch is being delivered later this morning. They asked what she wanted as a special request and she came up with sloppy joes, dill pickles, black olives, and potato chips, oh yeah root beer too. I thought after all that she ate yesterday she would blow up. Good thing she still wants to eat to keep her energy level.
The other big event for Olivia is a transplant day party. Kathy and some of the other child life crew along with Kirsten (music therapy) will throw the big event. From this perspective it will be better that the transplant will be later today. Also Dave has been able to spend time with Olivia this morning. They are really bonding through this experience. No doubt the message and works of God.

Dave is anticipating his procedure and trying to remain calm. He has not been able to eat since before midnight last night. He is doing ok though, he has been chewing gum which seems to help. Olivia gave him a very special gift this morning. A framed picture of Olivia's hand overlapping Dave's hand and then written caligraphy style the words Livee and Dad Together Forever, August 18, 2005. It is really neat, she and Kathy made it and have kept it a secret for some time. We will have many keepsakes and memories to cherish for years to come.

We are ready to go forward and start the rest of our lives from here on out. We have so many emotions and feelings on this day. I believe a since of relief will come soon.
We want to say thank you for being with us during Olivia's Journey and are touched by the many many acts of kindess that have been sent our way. Please continue to pray for our courageous Olivia.

Wednesday, August 17, 2005 6:53 PM CDT

Olivia has had a wonderful day. Here we are just one day before transplant. Olivia has had her final radiation and both morning and afternoon treatments went off without a hitch. The girls in radiology/oncology just loved her, she took them down some candy this afternoon. They gave her a big hug before we left. This morning Olivia had music therapy and an activity with Kathy. She is doing great, you can't believe the appetite she has. Seems like she has been eating all day. This is a wonderful thing for her to be doing. Her body will need all the nutrients she can get.

Olivia will have an Angel watching over her tomorrow to make sure all is well. I believe that with all of the many prayers for Olivia and Dave that everything will be fine. Dave will not have his procedure until 1:45 tomorrow a bit later then we wanted. Hopefully he will get bumped up and it will be sooner. Olivia will not receive her transfusion for a while after Dave is done. I pray that all of the staff will utilize the skills and knowledge that they have to their full potential tomorrow. We have so many people supporting us and know they are too.

We pray that this will be the answer for Olivia and that her body accepts the new marrow and makes it her own. I have faith that this will be the case and our prayers will be answered. Thank you each and everyone of you for your many prayers. God Bless.

Tuesday, August 16, 2005 1:05 PM CDT

I have a little time to send an update.
Two days pre-transplant and Olivia is doing fine. Right now Olivia is having a nap. She is half way done with her radiation. We went this morning at 8am and she once again did a great job. They unhooked her from her IV pole which was nice for her to have a little freedom. She is only on fluids to keep her hydrated. The radiation tends to make her mouth dry along with everything else.

There are so many thoughts and feelings that have entered my mind right now. I honestly feel positive and believe Olivia will do just fine during this process. She is so knowledgeable about all of this. She has commented that Dad's bone marrow is going to come in and knock out her old marrow. She also said that Dad will be part of me now, I will be allergic to penicillin just like Dad. That is true, whatever Dave may have as an allergy Olivia will now have after the transplant. Pretty weird when you think about it. She will have to get all of her vaccinations again. Her immune system will be replaced with Daves. Good thing he is in good health and no other allergies that we know of. We have to Olivia ready again to go for radiation. I can't wait for this part to be over for her. Radiation is a pretty scary thing but we know Olivia must have it to get better.

Thanks to everyone that has called, or stopped me in the hospital hallway, or sent an email. It truly helps us to move forward and reach our goal to cure Olivia.
As usual I will update soon.

Monday, August 15, 2005 6:39 PM CDT

Olivia is a celebrity of sorts, she was on the 6 o'clock news. I think KWWL did a great job of getting her story across and correct. I am not sure but it may be on again tonight at 10pm.
Olivia's radiation treatment this afternoon went real smooth. She is doing a wonderful job of holding still which expediates the process tremendously. What a trooper, the gals in radiology/oncology are pretty impressed that she is just 5 and doing such a great job.
We are back in the toy room playing dino bowling-what they don't think of. I guess the generous toy gifts from Wal-Mart will be here later in the week. Kathy our Child Life guru asked for our input as to what they should get. I had a couple of ideas. I can't imagine being up here without all of the many toys and games provided for the kids.
I need to run for now Olivia wants to ride the bike.
We are finally off of the 2 hour pee patrol, yipee for that maybe we both can get a good nights sleep.
Please keep Olivia in your prayers along with the other families that are in the hospital too.

Monday, August 15, 2005 1:26 PM CDT

I need to make this quick, but I wanted to let you all know Olivia and I will be on KWWL Waterloo (NBC) this afternoon at 6pm. I have no idea what I said but hopefully it makes sense.
Also I must brag on Olivia. She had her first radiation treatment this morning and held perfectly still. I am so proud of her. We now are down to 5 more treatments, we are leaving for this afternoons in about 6 minutes. The first treatment is the longest because they do extra measuring and adjusting so it will be somewhat shorter for her now. Olivia will get a prize each time she holds real still. Kathy from Child Life told Olivia she could do that.

I will add more later. I need to run for now. Thanks to Lisa for bringing Olivia lunch too. She had a request for some spaghetti. Not on the menu here at ole UIHC.

Sunday, August 14, 2005 4:51 PM CDT

Olivia is really wound up today. She is so adventeurous and funny. She has been making up jokes now for a few days and telling them to Dave and I. She had her bath and has done her daily routine of meds. Right now she is sitting in her bed doing a blood pressure check on her puppy, she said Mom I think I will get a false read on this because he is stuffed. We are still doing the pee thing every two hours or more if needed. She is done with the chemo but they still moniter the levels until tomorrow morning. Olivia starts the radiation, I think she will do fine. Holding still for about 40 minutes will be tough, she will get a break midway so that should help. Also tomorrow the kids up here will get a nice surprise. Wal-Mart through the Children's Miracle Network have donated $5000 worth of toys. How cool is that?? I don't know how they are doing it, if the individual kids get something along with the play rooms.
I pray all will go well with the 3 days of radiation. I am probably more nervous then she is. Maybe with all of the new toys she will be totally occupied and won't mind. It is hard to wait around for something that you know may change Olivia. All of the many things that could happen because of the radiation. I try to keep out the negative thoughts and focus on keeping her safe, happy, and healthy as she can be.
I will keep everyone updated as our day unfolds tomorrow. Dave is going to work until Wednesday afternoon when he must be here for a final check before Thursday. He will have to be on his own Thursday morning for prep and his procedure. Olivia and I can't go to be with him. So please keep Dave in your prayer's too. I think he could use some encouragement for his heroic part in this. If anyone wants to send him a card I know he would love it. Thanks to everyone for helping us through this. Take care and God Bless.

Saturday, August 13, 2005 5:31 PM CDT

Today Olivia has been doing fine. We started by getting up at 3am then 5am and finally 7am for her to go pee. They check the levels in her urine to make sure all is well before starting the Cytoxin chemo today. The rest of the weekend they will have her pee every two hours round the clock to see that her body is processing the chemo like it should.
Livee is getting along real well so far. Her appetite has been good and her energy has not been affected yet. She did have a nap today for a while earlier. It is so important for her to have good nutrition and enough sleep. Another vital part of her day is keeping her mouth clean with brushing and a rinse. We don't want nasty mouth sores to show up.
Our room looks like we never left. We try to make it somewhat comfortable. Of course that includes bringing way too much. We have snack items, drinks, and easy Mac that Olivia likes. As everyone knows hospital food is lacking a little something.
I have not heard anything from WHO or KWWL. I assume they will contact me this coming week at some point. Maybe they can get the correct information.
I keep thinking about how blessed we are that Dave is Olivia's donor. I just can't imagine sitting and waiting for a potential donor, or the if's, and when. We have been dealt some pretty unfair hands before but this time we have the ace of spades. Especially since our options were limited for Olivia without a sibling. I hope it is a sign of what's to come for her. We need a streak of good things coming our way.
Keep praying for Olivia and a successful transplant. Thanks and God Bless.

Friday, August 12, 2005 11:04 AM CDT

Hello, Hello,

We are back for Olivia's transplant journey to begin. First I must clarify a couple of things. The article in the Press Citizen had some misinformation. Olivia's transplant is not until next Thursday August 18th, exactly one week after the original schedule.
We have been home since August 8th. Olivia has been doing just great. It was so nice to be home and just chill before this next hospital stay. Olivia has new glasses and she lost her 2nd tooth. She was pretty pleased that the tooth fairy found her. I was pretty happy that she lost it before we returned to the hospital when her platelets will be low. So the story is today Olivia started chemo already this particular one is VP-16 and will run for 24 hrs then Saturday & Sunday she will receive Cytoxin. Monday, Tuesday, & Wednesday she will receive radiation twice a day for approx 40 minutes each time. We were going to have her put out but she would rather not so she can eat. The kicker is she must remain completely still while receiving her treatments. I think she will do fine, since she knows what she needs to do.
I got a call from WHO Des Moines last night. They want to do Olivia's story and then this morning KWWL called for the same reason. So I guess watch the news and you might catch a glimpse. I think we should start charging a fee for our time. (just kidding)
Olivia is already in the toy room playing with her friend Noah (another patient). I am sure we will spend hours in here.
I need to go right now but will add more later. Notice we are in room #88 and phone is 353-9201.

Sunday, August 7, 2005 3:15 PM CDT

Hello everyone!!! A moment to update.

Olivia has been doing real well at home enjoying her space. I had a chance to get a haircut on Wednesday night. Olivia spent time with her friend Mariah they of course had fun. Thursday we had an appointment at the clinic to go over the plan for radiation and to have labs done. Her labs results were great, her numbers all looked good. On Friday Olivia had an appointment to have her eyes checked, she will be getting new glasses. The frames she has right now don't seem to wear well and it seems we have them adjusted way too much. On Saturday we came down to Fairfield to see Grandma & Grandpa Ogden. They are sort of settled in to their new home but still have many boxes. We are at my brother's house right now which is my parents old house. It seems a bit strange that this is no longer Mom & Dad's house. The cool thing is it will still be in the family.

We will going back to UIHC this Thursday for a radiology appointment. This time they map out on Olivia where she will receive the actual radiation. No fun because she will have to be completely still for some time. I don't know how well I would do with that either. Then on Friday we will be admitted and start Olivia's chemo. She is doing so great right now and to think we have to drag her counts down again, pretty hard to deal with. We know we must move forward so we can get her through all of this and kick this cancer once and for all. She will do fine like she has in the past. Once we get to UIHC I will update again and inform everyone with room and # info.

Thanks to each and everyone of you for your kind words and thoughtfulness. Praying for Olivia and all will be fine.

Monday, August 1, 2005 12:27 AM CDT

Great news the preliminary results on Olivia's spinal and marrow are clear. We are very relieved with this news. That means no additional chemo until she is ready for transplant which will now be August 18th. So the plan as of this minute is to leave this afternoon and go home. We won't be coming back until August 11th. They want Olivia to still recoup a bit longer from the chemo when we first returned. The good thing is will we have a longer break from here and be home. The not so good news is that we are not assured this room even though Olivia is next in line for transplant. Hopefully it will work out and we will get this room. It is the biggest one, I guess you can't have everything.

So if you want to get a hold of us call our home. When we return I will update with the new info etc... We will be back in the clinic this Thursday so they can check Olivia's counts. We are now in the middle of packing everything up so we can pack it back up when we return. We are not real happy with them not letting us keep this room. They have one other open room in the bone marrow unit and several others outside the bone marrow unit.
I am just venting I guess.

Thanks for the many prayers, I will try to update while we are home. I need to get busy now.

Monday, August 1, 2005 7:32 AM CDT

Olivia's white count is at 2.7 today, this is great news. We are getting ready to go for her spinal/marrow. Please Please pray that her results come back with nothing in her Central Nervous or in her Bone Marrow. This would be the best news then we can proceed ahead. I will update before we leave the hospital if we get to. Pray Pray.

Sunday, July 31, 2005 1:26 PM CDT

We are having a great day of relaxation here at ole UIHC. Olivia's white count is now at 1.5 Yippee Yahoo!!!!!!!!!!
That is the best thing for Olivia to help her fight off anything and have more energy. So look out today she is raring to go. She has discovered the Playstation is alot of fun and they provide many different games to play. Anything it takes for her to be content. Sometimes the days get pretty long up here. I am trying to think of a hobby for myself to fill the time. Reality is once Olivia starts her chemo etc... I will busy making sure she potties every 2 hours and is eating right, brushing her teeth, and all of the rest. I will enjoy my moments of leisure for now.

Today already Olivia was playing games in the play room. She has a new friend up here his name is DJ, he is 12 and from Des Moines. He and Olivia get along real well. It is so theraputic for her to talk about everything like her hair being gone, meds, and dressing changes. Just to have someone in her shoes knowing how she feels and what she is thinking is so important. The best medicine is usually talking to and being with others. Also today they removed the 3 stitches they put in her leg for the biopsy last week. We are headed to the tub real soon, Olivia is not hooked up to her IV pole so it makes it somewhat easier for a bath. Her antibiotic will be done tomorrow. So after her procedure we can hopefully head home.

I have added to the into of her web site the address for Olivia's Benefit Fund. Thanks to all of you for the many thoughts and prayers.

Saturday, July 30, 2005 8:13 PM CDT

Olivia is doing great her white count was .9 today an improvement from .6 yesterday. This is what we want to happen. Her body will be ready for her transplant, as long as she is in remission from the chemo treatment she received this time. We will know for sure on Monday after her spinal/marrow procedure. If all is ok then we will go home on Monday. Then return on Thursday to be readmitted. Olivia is itching to go find an activity right now. She had a long nap this afternoon so she is ready to go. I stepped out of here finally for a while. I went home and did some cleaning and other odds and ends. It was just nice to get out.

Olivia's puppy Chocolate is staying at her friend Pete's house until Monday. Hopefully we will be home then and can have some time to play with her until we return. Then I am not sure where she will be going. We are working on a couple of options.

I will add more tomorrow probably. Thanks for all of the wonderful emails to Olivia, she enjoys them.

Friday, July 29, 2005 7:34 PM CDT

Today was a great day for Olivia. She was very happy and acting like herself. All smiles and playing with all the Child Life gang. We had some company for a while. The best news is her white count was up to .6 let's hope that keeps climbing. They also said she would have a spinal/marrow procedure on Monday instead of Tuesday. That would work out better in case we do get to home until Thursday. A bigger stretch of time, not a whole lot but that is just fine. They told us that we would still have this room when we came back. How wonderful to not have to move all of our stuff twice.

Olivia is talking to her cousin Tori on the phone right now. It is so nice when people call her. Most of the time she loves to jabber on the phone.

Today I talked to 2 different groups from Wal-Mart in conjunction with Children's Miracle Network. It was kind of fun and a nice break.

Thanks to everyone for the many prayers and emails. It is great to have such support from friends and even people we have never met. God Bless.

Thursday, July 28, 2005 4:21 PM CDT

Olivia is doing great today. She has been very busy with activities. Yesterday she had her photo shoot with KCRG TV9. This is to get ready for The "Light the Night Walk", the promo will air several times between now and the September 24th walk. I think it turned out real well. I have not yet seen it but will get a copy. Tomorrow I am talking to a group from Children's Miracle Network about the brand new pediatric unit on floor #2. The whole unit looks real similar to the bone marrow unit here on #3. Today I also did an interview about Dance Marathon for the University of Iowa. It will be used to recruit new Dance Marathon members. Dance Marathon money provides the Child Life staff, TV's and so many other activities for the kids. In fact the whole bone marrow unit was provided by the Dance Marathon.

Olivia's beautiful curls and almost all of her hair are now gone. This time it came out quick. She is still the same pretty little girl and knows that looks don't matter.
She has not had any problems with it. Olivia's white count is at .5 again today. Sometimes it takes a while for that number to come back up. They have talked about us going home for a few days. I said sure if they can assure we could keep this room. We are working on that, we don't know yet what's up.

I will add more later I need to run for now.

Tuesday, July 26, 2005 5:09 PM CDT

Quick update, KCRG is not coming until Wednesday at 2pm. I don't know if any of it will be televised or just for the Leukemia & Lymphoma Society promo shoot.

All of the test's on Olivia's biopsy came back negative. They are attributing the rash to the ARA-C chemo she had? Also her neuro test went just fine. The Doctor said she that Olivia is testing at a 9 year old level, so that is a positive if in fact the radiation does set her back a bit. Of course there is always the possiblity that radiation won't have any long term effects at all. Olivia has been walking much better, not up to full swing but more and more each day. The leg pain will probably subside once her white count jumps up, right now it is at .5 this is a slight increase. The white count had been at a stand still for several days at .4 hopefully tomorrow will see yet another increase.

Check out the pictures, I just updated them. Thanks for the many prayers sent Olivia's way.

Tuesday, July 26, 2005 11:30 AM CDT

Today is a calm day so far. Olivia has already received platelets and a blood transfusion. She is somewhat sleepy right now, she gets tylenol and benedryl before platelets or blood. At 2 this afternoon Olivia will have some neurology tests done just to get a baseline for her before transplant. I told her she gets to play games and have fun with their computer. That is all they do is have her play and answer some quesitons for them. Right now I am waiting results from the biopsy they did on her skin on Sunday. She has a rash that is on her arms, legs, and lower back. They said it can be from the infection she had in her line or a reaction from the antibiotics, the worse possible news is that they are leukemic lesions. Leukemia can present in many different manners. The rotton cancer just can't be simple but complex and relentless. We won't know until her Doctor finds out from pathology. I hate this waiting game, it makes me anxious because of the unknown.

Tomorrow KCRG TV9 will be coming up here to continue their story on Olivia as the honoree for "Light the Night Walk" this September 24th sponsored by the Leukemia & Lypmohma Society. KCRG are doing a photo shoot to help promote the walk and it will be aired several times before then. The other honorary child "Doug" is up here too. Ironically enough Olivia and Doug both relapsed within a week of each other. They just met at the Kernels game on July 14th. It is amazing how many families you meet here, each one dealing with a little bit different circumstance. All of these kids need your prayers. They are all so brave and endure more than anyone should have to.

I will update later at some point.

Sunday, July 24, 2005 10:16 AM CDT

Yesterday was off to a rocky start. Olivia was rather cranky in the morning and did not want to cooperate. I think it is a matter of her having some control and sometimes she gets tired of me telling her what to do. We accomplished what we had to though. She has been having some leg pain. We think it is partially due to her nightly shot. This time she receives a higher dose and this can cause aches in her bones.

Olivia's day totally turned around when Grandma and Grandpa Ogden came to see her and they brought cousin Tori with them. Olivia did not know that Tori would be here. Those two had a ball, playing together in the activity room and then with the playstation in Olivia's room. Definitely the best medicine for her.

Right now we are waiting for dermatology to show up Olivia has a few red places on her skin that can be caused by the infection she had in her line or by medicine. Olivia has never had any reaction before so they just want to check it out.

We have a little more information about Olivia's transplant now. The chemo treatments will start on August 5th with VP16 on that day then on August 6th & 7th she will recieve Cytoxan both are very intense drugs. On August 8th, 9th,& 10th she will receive Total Body Irradiation (TBI) this will prepare her body for the actual transplant which is slated for August 11. this is the day of the Bone Marrow Transplant (BMT). The procedure for her is no big deal she simply receives the marrow through her central line like a transfusion. Dave is the one this time that will endure the pain and discomfort. A small price to pay for end results. They are helping each other with this and we all talk about opening to help her through. We pretty much do that with all of this, after all it is her body and she knows how she feels.

I don't think we are missing out to badly from this hot weather. I went home yesterday for a while for the first time. I watered my poor flowering plant out front and gave Olivia's garden a drink. I don't know what good it did but it made me feel better. I talked with my neighbor for a few minutes and had a disc made from our digital camera. So one of these next days I will be adding more pictures for you to see. We may have a window of opportunity to go home for a couple of days. Now that we are all settled in our luxury suite. You can't believe all of the things we have in this room. Mostly comfort items for Olivia. If we do go home we are hoping they can save this room since it is so big and all of our things are already here. It would only be a few days they would need to hold it. It of course depends on the needs of other patients.

I need to close for now. Don't be afraid to call at anytime. Olivia is doing real well.

Friday, July 22, 2005 11:08 AM CDT

Whoops I added before a correction was made. Obviously the no fevers is a good sign. Once it is added the info is added. Thanks for bearing with me.

Friday, July 22, 2005 10:53 AM CDT

Finally a chance to update Olivia's progress. She is enjoying morning activity right now. Olivia has not had any fevers for few days not which is a good sign. The infection she grew in her line is also coming up negative. This means nothing is growing from the cultures they have taken in the last couple of days.
Yesterday Olivia had to have another dressing change. A little mishap caused this. Dave was having his workup done for his part of the transplant in the peds clinic on floor #2. Olivia wanted to be part of that so we were all down there, she wanted Dave to pick her up which he did but her line that is connected to her pole for antibiotics etc... go caught somehow. This caused pulling and the loop came out of the line which enters into her chest. She was crying and upset so we came back to her room and fixed the dressing and put another loop in the line. They also did an x-ray to make sure nothing internal was pulled out. Good news nothing was damaged just discomfort for her.
Today they discussed a tentative schedule for Olivia's transplant. Somewhere around August 11th or 12th should be the day. She will have radiation and also chemo before the transplant takes place. I will give details later. Right now the only other preliminary test is with neurology they see where Olivia is now with different aspects of developement so they have a baseline to go from. We pray that the radiation will do minimal if any permenent damage to her. That is probably the scariest part of this transplant is knowing she will need total body radiation. Like all other aspects of this road less traveled each child and response if different. We will do anything we can to help prevent discomfort for her. I try not to worry about things that may or may not happen. I know Olivia is her own person and her body will take care of her and respond like it needs to. She is such a fighter and has really been taking this all in stride. The only thing so far that I have noticed are a few hairs on her pillow. One thing at a time.

Please keep Olivia in your prayers.

Tuesday, July 19, 2005 7:32 PM CDT

Olivia is at evening activity so I thought I would write a little something. Today she had an echocardiogram along with a CT scan done. This is all in preperation for her bone marrow transplant. The Doctors will be meeting with Dave on Thursday to discuss further the plan for him and give him a physical and other blood work I think. We of course do not know when the actual transplant will take place but getting the preliminaries done is a step in that direction. I am trying to prepare myself with knowledge and prayer. Right now I am doing fine but do feel anxious at times.

I can't believe all the children up here for one reason or another. Already we have seen several families come and go.
I wish we were one of them going but know that is not possible right now.

Olivia will not be able to attend school this year. She has been talking about it for so long. It makes me sad for her, there could be a chance that after next year like March or later she could start. We will worry about that when the time comes. Even if she misses all of kindergarten I am sure she would test up to the first grade. One thing at a time right.

It sure is nice to see Olivia's pretty eyes again. Today has been much better in that department. We are so proud of girl.

Tuesday, July 19, 2005 7:32 PM CDT

Monday, July 18, 2005 5:31 PM CDT

We had kind of a long day again. Olivia still had her eyes closed for most of the day. She went to activity this morning with her sunglasses and a hat on. Then we went to opthamology for them to check her eyes out, at that point she decided to open them. They took a look and all seemed to be fine. They believe it is from the Ara-C chemo. This is the same thing that happened to her last summer. Chemo can have so many side effects. Olivia is resting right now she was so tired because her hemoglobin was low, she is receiving red blood right now. The good news is she was acting more like herself this afternoon after she opened her eyes.

The infection in Olivia's line is somewhat disturbing for the simple fact that it has been in for such a short time. Our doctor told us that there was another circumstance that this happened. The little boy had his line put in and an infection showed up early. Where is the infection coming from the equipment, the OR room, the actual new hickman line??? We are looking into this a bit further, we don't know yet if she will keep this same line or they plan to replace it. It is definitely a catch 22 if we keep it in we risk another infection but we don't want her to have to go through having another one put in.

Here's one for you. Today I ordered a salad for lunch along with Olivia's lunch. As I was eating the salad there was something strange in it. It was a twist tie, I could not believe it. Here I am thinking how sanitary is this food for children that are immune compromised and for others. I will be passing this on to the right people, they need to know.

Hopefully Olivia will have a restful night. I think she needs it. We are hanging in there and doing the best we can to keep Olivia positive and ready to fight this thing head on. Thank you for the support and prayers.

Sunday, July 17, 2005 2:08 PM CDT

Olivia is doing better today. Yesterday was an uncomfortable day for her. She continued to have fevers through out the night. She also was given platelets as they were quite low. We know the source of the infection which is her central line. I can't believe she had that put in a week ago and there is infection already. The positive is we know the source and can treat accordingly. She is still not wanting to open her eyes, I think she is mostly scared along with burning discomfort. I have tryed many avenues to get her to try to open them up. Right now she is listening to a movie for the 3rd time. Once we are done with that she will have a bath and then we will change her dressing on her central line.

We more than likely will remain here until and after transplant. At this point that seems like the logical move. It is so nice to be home but also then you get comfortable which in turn makes it harder to come back here. There are so many kids up here every room is full. We of course will never share a room because of the infection risk.

As you may have noticed we are now in room #70 and our phone # is (319) 353-9235. This will remain until we go back to the bone marrow unit at that time I will let you all know the info. More later. Olivia, Dave, and I so much appreciate all your thoughts and prayers.

I also want to mention that Olivia's Grandpa Ogden is doing real well with his healing after surgery. He and Grandma came to see Olivia throw out the pitch Thursday night. God Bless them for making the effort.

Saturday, July 16, 2005 6:54 PM CDT

We are not at home now. Olivia developed a fever earlier this afternoon so we are admitted once again. We are in room #70 and our phone # is 353-9235. This is the room with the big screen TV/DVD/etc... The room is somewhat smaller than some. We will be here for now until we either go home or until we move back to the bone marrow unit. My guess is we will be staying here.

Olivia did real well Wednesday and then Thursday night too. For those of you that did not see Olivia did a great job throwing out a pitch at the Kernels game Thursday night. The KCRG coverage did not include much of Olivia but she was on TV. We did not end of being part of the interview because of the timing with us just getting home Wednesday night and just getting settled back at home. After returning from the game on Thursday night Olivia complained that her left eye hurt and did want to open it. She wanted a cool cloth on it all night. Then on Friday when she woke up both of her eyes hurting and she could not open them. She has had a cloth on them since. I know she is afraid to open them. She had this same issue last year after the Ara-C chemo. Hopefully tomorrow she will feel better and want to open them. I have a couple of good DVD's for her to see, anything to prompt her to open her eyes. Right now she is resting and her fever has subsided. They have already run cultures and given her tylenol and an antibiotic. We know we will be here for 3 days for sure.

We will get through this like we have before. I believe her fever is a result of the chemo. We will know more tomorrow. Right now I need to go but will keep everyone updated. Please keep Olivia in you prayers.

Wednesday, July 13, 2005 7:32 AM CDT

Good news for Olivia. We will be going home today later. She has been doing great and will done with chemo early afternoon. So any of you that can come to the Kernel's game Thursday night should try to be there. We are please that she can take part and be there.

We meet with Dr. Radhi and the transplant coordinator Dave Tapman (I think that is his name) this afternoon. They will talk more in detail about the next step etc... We at some point must go to pharmacy to restock on her medicines. (Yuk!!!) Right now she takes just one med in the morning/ night and then on Mon-Tues-Weds one more added to that. I will need supplies for her dressing change each week and the daily flush of her central line. Back to the fun. Actually Olivia seems to have matured a bit on these issues. I think she has figured out that we waste way to much time if she complains and makes excuses.

Olivia loves to read now. We have spent a lot of time reading and going to the library here. When we are back in the bone marrow unit this will sure be handy since she will be more isolated from others. We can think of things to keep her occupied. I think we might buy some bandanas and decorate them with beads and that kind of thing. Last time Olivia wore hats a few times, she prefers more of the baseball type hat. We have no idea when her hair will start to come out. I keep telling her it is too hot for hair. Hopefully it will be like last time and it won't bother her. I know it will hard this time, her hair is just starting to get a little longer and I can tuck it behind her ears. But it's only hair. We have Olivia and she is the most important to all of us.

If anyone wants to say Hi just give us a call (319) 338-8141 or before stopping by. We don't know how long we will be home but should know more after today's meeting. Thanks for being there. Please keep Olivia in your prayers.

Tuesday, July 12, 2005 3:52 PM CDT

We have been keeping busy as usual with all Olivia's activities. We are in the toy room waiting for our neighbor's to come see us. It is so nice to have friends and family close. Right now Olivia can have visitors and probably will for a while yet. She is now done with the Ara-C chemo and then will be done tomorrow with the other. We may get to go home but won't know anything until later tomorrow. As we know hospital time is like another time zone. We don't get to excited until the dismiss papers are in hand. No big deal we just take it as it comes.

I have finally met another Mom here whose daughter has been diagnosed with AML. She and I plan to talk more when time permits. Her daughter is 15 and already received her transplant. In their case her brother was a match. The other children here so far have had some other type of cancer. I had to leave for a while earlier to take care of some business. That is the first time I have been out of here. I was home momentarily, little Chocolate was so excited to see me. I know Olivia misses her terribly. We may even bring her over to see Olivia at some point. Again it just will all depend.

I must cut this short and will add more later.

Monday, July 11, 2005 9:48 AM CDT

Olivia is playing in the toy room. She developed a fever last night from the chemo. Damn chemo. The chemo drugs they are using are Cytarbine (Ara-C) and another relatively new one called Novantrone. This drug is used for AML patients and they claim to have a positive end result. I had mentioned the Ara-C earlier but wrote the info incorrectly.

We had a pizza party last night in the toy room with another family. We also attended church with them Sunday morning. It helps to have others that are going through some of the same things we are. We all need to support each other and somehow get through this.

I am waiting to here from work to see what my situation will be with them. Finances are so difficult at a time like this. It's not a high priority but we must to continue to pay the bills. Again we will figure out a way. Our main focus is Olivia and getting her well again.

I must run for now, and will add more later. Thank you for all the prayers and support.

Saturday, July 9, 2005 8:52 AM CDT

Yesterday was a very long and trying day. Olivia played and played until we had to go for her echocardiogram and then finally her surgery to put in the new Hickman line. The echo was around 11 am and then around 2:30 she went in for the surgery. The poor girl of course could not have any food or drink since Thursday night. That is probably the most difficult part of the wait. She did fine but was more than apprehensive about getting the line put back in. She got pretty used to not having it along with everything else.

After the line was inserted they began chemo last evening. She will receive 2 different types of chemo for 6 days. The Ara-C she has had before and the other one is called Cytarbine. We will give her eye drops every 2 hours to prevent irritation in the eyes. She will more than likely loose her beautiful curly hair. I keep telling her it is way to hot for hair. Overall she has taken this all in stride. We explain what is going on so she will not have any surprises and know what to expect.

We will be here for some time. Olivia will have a bone marrow transplant once she is back into remission. Hopefully this course of chemo will do the trick and then we can move forward with the transplant. We hope and pray this will be the miracle cure that she needs. The cancer is in the marrow but not the central nervous system, this is a much better situation that what it could be.

I will add more later. What we need most are prayers for Olivia so she can get back outside where she belongs. It is so hard to loose your freedom and daily routine. We will make it through and think only positive thoughts which I believe to sometime be the best medicine. Thanks for being there.

Friday, July 8, 2005 8:43 AM CDT

I need to make a correction Olivia's phone number is (319)353-9198. I mistakenly wrote the wrong number on my last update.

We are in the toy room just waiting to be called for her surgery. About the only thing we know is she will have an echocardiogram at 11am today. She has been on IV fluids since last night and won't be able to eat or drink until after surgery, we are an add on so we have no idea what time this will take place. Hopefully sooner than later. I have to run but will try to update when possible.

Thursday, July 7, 2005 6:56 PM CDT

Some unhappy and sad news today for us. Olivia had a spinal and marrow procedure today. The results indicate that the cancer has returned in Olivia's bone marrow and she will need a bone marrow transplant. One positive her Central Nervous System is clear. That is real good news. We believe we caught this early.Olivia's labs in June showed nothing. Her last spinal/marrow was in April which was clear as well. The most important factor we have in our favor is that Dave is a potential match for Olivia for her transplant. We won't have to go on the national registry for her marrow and the wait will not be as long to get things started.
We are admitted back to UICH our room number is 65 and the phone number is (319)353-1918. Tomorrow Olivia will have another hickman line put back in and then they will start chemo. We don't know all of the details yet of course. I do know that we intend on staying as normal and doing as much possible for Olivia to assure her happiness and will be positive for her. We know we have a determined fighter on our hands and she will prevail as she did before. If we can we want her to still be part of the Kernel's game next Thursday and throw out the first pitch. We will keep you all updated as we move forward.

Please keep Olivia in your prayers. We appreciate all the support and love that has been sent our way. I know she would also love cards etc.... God Bless!!!

Wednesday, July 6, 2005 7:55 AM CDT

Hi everyone, hope your summer is going well. We have been very busy.

Olivia is doing great, she has more energy then I could imagine. We go in tomorrow and she will have a spinal and marrow procedure. I anticipate all to be good and fine. I am anxious to see how far out we get to schedule her next one will be. I hope they give us the ok to wait a while. Olivia is going to stay with my brother and sister-in-law this weekend. She is pretty excited. Also after her procedure tomorrow she has team pictures for T-ball and then a game following. I think she will recover enough to participate.

Don't forget next Thursday is her big debut as a pitcher. That should be a lot of fun. I believe the game starts at 6:30. I have to run so more later. Also look for upcoming pictures. Thanks later.

Monday, June 27, 2005 7:53 AM CDT

We made it to the air show, or should I say airless show. Boy was it hot hot hot!!!! The show was only their practice runs but we had fun anyway. Olivia spent time with her friend Cameron, we know him from the hospital. He also had Cancer. We went to the Champion Families Luncheon on Saturday and enjoyed seeing familiar faces too. Then the work began, Olivia went to my parents and packed and cleaned to get them ready to move. I had more things there then I thought. Busy Busy, but I feel we accomplished alot. Back to work now but I will add more later.

Tuesday, June 21, 2005 7:46 AM CDT

Hello Hello!!!!

Olivia survived her first camp experience. She had an absolute wonderful time. We are so proud of her for being such a big girl. The staff members that take time to be with these kids are the best. A big thank you to them. I am pretty sure this will now be an annual event for Olivia. We picked her up around 9:20 am on Saturday and then took off toward Davenport for my nephews graduation party. What a long day of travel. Olivia talked and talked about all the many events and fun at camp and then she crashed for a couple of hours on the way. That is what I was hoping so she would be somewhat rested. On Sunday we enjoyed a nice Father's Day at home swimming in the pool and relaxing.

Olivia's Grandpa gets to come home today finally. He is recovering nicely but will have limitations he must follow.
Also Olivia had her picture in the Cedar Rapids Gazette this last Sunday on the community news page. If you have a chance take a look.

Don't forget Olivia also will part of the Kernels game on July 14th around 7pm. She is not to sure about this but I think will be fine. We go to the Quad City airshow this Friday and then a luncheon Saturday at UIHC. I must run for now but will add more later.

Wednesday, June 15, 2005 7:33 AM CDT

Camp update, Miss Olivia is doing great. I called them last night and talked with Mary one of the Nurse's from UIHC. She said Olivia is having a blast, giggling and laughing with all the other kids. I was relieved to hear that. We are so proud of her. I know this is much harder on us then on her. We are just thankful she gets to go and be part of such an experience. When I look back at last year this time and how far she has come along. Thank God for everyday.

Olivia's Grandpa (my dad) is doing well. He had surgery last Thursday and was transferred from Des Moines back down to Fairfield just yesterday. I don't know how long he will be staying in the hospital. It will depend on rehab and therapy.

Olivia will be throwing out the first pitch at the Cedar Rapids Kernel's game July 14th, please join us. I believe game time is 6 or 7pm. All ticket sales go to the American Cancer Society. It will be a great time for her. This is part of the Light the Night event that she is honeree of!!
I will update as time gets closer.

Must run for now. More later.

Monday, June 13, 2005 7:38 AM CDT

Olivia is off to camp in Boone. She was so excited. They have swimming, crafts, and many other things planned. She picked out the top bunk and decorated her name sign right away. The other little girls in her cabin are also 5 or 6 years old and are just adorable. They will have a ball. No tears on her part, and so far I am holding out. The house is way to quiet. I wish the camp were a little closer to home. What a great experience for her.

Saturday night we went to the Relay for Life event in Coralville. What a great fund raising event for the American Cancer Society. It is amazing what people can do when they pull together. Olivia walked the Survivor lap and helped hold the banner. She was pretty big stuff with all of the adults by her side. It was great to see some of you again.

Have a great week, I have to get to work now.

Friday, June 10, 2005 12:24 AM CDT

Hello to all!!!

Olivia's Grandpa Bob is doing fine, he had surgery yesterday to repair his fractured pelvis. He will not return to Fairfield until beginning of next week. We plan to stop in Des Moines this weekend on our way to camp. Olivia is a bit aprehensive and thought camp was just one day. I think we will talk about it some more and take her up then go from there. If she wants to stay no problem or if she wants to come back with us that will be just fine. We want her to decide. I think once she gets there and sees all the kids and activity she will be comfortable staying. I wish it were a little closer to home. We will update you. Also be sure to check out Olivia's new pictures.

Remember if you are looking for something to do this Saturday evening The Relay for Life is going on. Come on out and support the American Cancer Society. Cretzmeyer Field in Coralville, opening ceremony begins at 6pm. \

Gotta run for now.

Tuesday, June 7, 2005 7:52 AM CDT

We have been busy, with this and that. Olivia's Grandpa has been in the hospital since last Friday. They thought he had a broken hip but now they know he has a fractured pelvic bone. So he is now in Des Moines at Iowa Methodist. We don't know for how long. He will have surgery today.

Olivia will be partaking in the Relay for Life this Saturday night at Cretzmeyer Field in Coralville. The event starts at 5:30 and then the survivor lap is at 8pm. Please come join us anyone that would like. Also then Olivia is getting ready for camp. We take her this Sunday to Boone. she is very excited about this. She will be gone the whole week, unless we get a call before. I think she will do fine. They plan so many activities and fun for them.

I have to get going for now, please take it easy and keep in touch.

Wednesday, June 1, 2005 7:49 AM CDT

Finally an update. Olivia had a 6 week follow up visit to cardiology on Tuesday. They just did an x-ray and listened to her. All is fine. She is getting ready to go to camp on the 12th of June, first time away should be exciting for her. The Relay for Life event is June 11th here in Iowa City. There will be games and fun for the kids, the survivor lap is at 8:30. If anyone wants to join us feel free. It is at Cretzmeyer Field across from Old Chicago in Coralville. The event starts around 6:30. Should be fun.
Be sure to look at updated photo's soon to appear. I have to scoot for now. Enjoy and more to come.

Wednesday, May 18, 2005 2:14 PM CDT

Not much is new. Olivia will be going in for labs tomorrow just to check counts. As far as anything further it won't be until July. What a nice break for her.
Olivia is going to camp in a few weeks, she is pretty excited and looking forward to it. A whole week of fun!! The Relay for Life event is coming upon us too. They are all over the area, so try to attend one in your area if you can. Look for more pictures soon. I am working so must cut this short. Take care.

Thursday, May 5, 2005 8:00 AM CDT

Just a quick hello, Olivia is doing just fine. We don't go back to UIHC until mid May just for lab work. The next spinal is slated for late July.
At some point there will be a press release about Olivia and her story. The Leukemia and Lymphoma foundation have selected Olivia and another young boy as their honorary children for this year. I will keep you updated.

Thanks for your prayers and continued support. It truly means so much to our family.

Monday, May 2, 2005 7:51 AM CDT

Could we have a little weather change?? My poor flowers. Anyway Olivia has been active and 5. She is so much fun, never a dull moment. I did take her in Friday for an unscheduled visit. She had some spots on both feet that were of concern and she is fighting a cough/cold. Her counts were good and all checked out to be fine. She also has a rash on her leg. I have to make sure any little thing is just that, we can not be to cautious or complaisant about anything.

Last week our fridge conked out on us so we are trying to figure out the best move to replace it. Thankfully my parents had given us their old one that we have in the garage. What a life saver for us. Dave had just bought groceries of course. But all will work out, somehow.

I must go I am at work. More later.

Thursday, April 21, 2005 7:52 AM CDT

Olivia has been doing great. Who would even know that she had surgery. We are all so relieved that it is over. The results from both her spinal and marrow came back clean and good. We have an appointment today to discuss her future as far as spinal and marrow procedures. They told us that we she won't have them as often. This is wonderful news for everyone but especially Olivia. We have reached a turning point in the right direction. Yee Haw!!!!!!!!

Olivia has Kindergarten round up tomorrow, again. This will be fun for her. Meeting her new classmates and moving forward to the big time. I still find it hard to believe she has not even been to school yet. Olivia has been so strong and brave and gone through more then most people have to in a life time. What a trooper we have. We can;t wait for summer and all of the fun to come.

God Bless, and take care. We will update soon, hopefully with some pictures too.

Thursday, April 14, 2005 7:47 AM CDT

Olivia is doing great. The hard part if keeping her down and somewhat inactive. She is not to climb stairs for 2 days and lay low. That's a hard one when you're 5. Grandma and Olivia have plenty to keep them occupied today.

We do have results for Olivia's spinal and all looked fine. They will advise us today about her marrow results. I anticipate all to be fine too. I am so relieved and ready to move on. Today I can tell already that I am beat from the stress of it all. I will survive and keep on moving ahead.

They advised us yesterday that Olivia's spinal and marrow procedures will be spaced out now and not as frequent. That is wonderful news for her.

I need to get to work now. More later.

Wednesday, April 13, 2005 1:36 PM CDT

Just a quick update for everyone. Olivia's surgery went just fine. The oncology team came in around 8am and was done with their part by 8:35 and then the cardiology team finished their end. She was done by 9:40 or so. The procedure went smooth and the Doctors are pleased with the way the device fit etc... Olivia is resting and has to be still for a while yet.

We don't know yet any results from the spinal or marrow but will know something before we leave. No news is good news and we have not heard a word. We are pretty sure we will be leaving today. They have to do an echocardiogram yet and run an antiobiotic and I am not sure what else. It will be a while yet before we get the ok to leave. I need to get back to the room. We were on floor 5 but will be on floor 7 for the remainder of our stay.

Thanks for the many prayers and thoughts sent our way.

Tuesday, April 12, 2005 7:51 AM CDT

Today we go the meet Dr. Thomas Fagan the pediatric cardiologist. He will be the one to do Olivia's heart procedure tomorrow. Today they will also do some pre-op stuff. Hopefully we can skip some of it since Olivia is already an outpatient etc...I know lots of prayers are out there for Olivia and we appreciate every one of them. She will do fine, the anticipation of it has been the most difficult. She on the other hand is handling everything just fine. Olivia is so used to the hospital surroundings and all of the Drs and Nurses that I believe that will be to her benefit tomorrow. Most kids that have procedures are not familiar with all of that until they get there. The surgery may take up to 6 hours and recovery anywhere from 4-6, but as we know it's all an individual thing. I will try to update when I can tomorrow. I believe we will spend the night at UIHC. They usually want to keep an eye on things.

We spent the weekend at Grandma's. Olivia went to school with her cousin and we had a late Easter egg hunt. They had a wonderful time and the weather was perfect.

I am working so I must cut this short. God Bless and please keep Olivia in your prayers. Thank you.

Friday, April 8, 2005 7:50 AM CDT

We have been pretty busy just having fun. Olivia is at her Grandparents today as her daycare person Patti needed the day off. Olivia will be going to school with her cousin Tori today. They have lunch together and recess too. Olivia just soaks in all in she loves it. I will join her tonight. I must cut this short but will add more later. We are preparing for next week on April 13th Olivia has her heart surgery. We can't wait for this to all be over, so we can move forward and enjoy the summer. God Bless and take care.

Thursday, March 31, 2005 7:43 AM CST

The Easter Bunny found Olivia, we had an impromtu Easter Egg hunt with the neighbor boys. They had fun. We still have another hunt in 2 weeks with Grandma and Olivia's cousins. Thankfully we did not work on Easter but did work on Saturday before. We sure are glad that spring is here, we like to be outside instead of inside.

Olivia's pal Chocolate has a new do!! We had her groomed you know hair and nails. She looks pretty spiffy. I thought she might be hairless but she has fluff around her face and tail. They painted her nails and put a green ribbon on top of her head. I will update with a picture sometime.

Olivia is talking about school and more than ready to go. She was a little upset because she keeps saying I was supposed to start school when I turned 5. We assure her she will still start when she is 5 but will turn 6 soon after.
She is doing so well with reading and she loves addition.
I often have to remind myself she is only 5.

Sometime soon there will be a press release about Olivia and her story. The Leukemia Foundation has chosen her along with another little boy to be the children of the year. The article will probably be in the Cedar Rapids Gazette and possibly the Iowa City Press Citizen news papers. Between now and September 24th there will be alot of press about the Light the Night Walk and the two kids. We are pretty excited for her.

You will probably get tired of me bragging it up. I have to run for now. More later. Take care and God Bless.

Friday, March 25, 2005 10:09 AM CST

Olivia had an appointment yesterday to check her counts. They just did a poke of her finger, she was a little scared but braved her way through it. They called us later to let us know that all of her numbers look great. Relief, Relief!!
I sure don't miss being at UICH at all. Although I did run into an old friend, and we usually see someone we know.

Olivia is anxiously awaiting to see the Easter Bunny, I don't know if we can do an Easter Egg hunt as I may be working the whole day tomorrow. Have a great Easter.

We will update later!!!!

Tuesday, March 22, 2005 7:45 AM CST

Good Morning, Just a quick update. Olivia is doing just fine giving her Mom a hard time like most 5 year olds. Her hair is really growing and still pretty curly. We are still all adjusting to somewhat of a normal schedule. We are going to the clinic for labs on Thursday just to check out her counts. I anticipate all to be good and fine. We are still slated for her surgery April 13th, we more than likely will spend the night. Then on the 14th it will be Grandma to the rescue, she will come stay with Livee while I work. Livee must be still for 6-7 hours post surgery, rather hard for a 5 year old. I have rounded up games, books, and anything else I can think of. We will be celebrating our Easter late because I am working this weekend. Must pay the bills somehow. I must go for now.
Thanks for all the emails and support.

Thursday, March 10, 2005 10:11 AM CST

Olivia has been doing great, pretty much normal regular activity.
Olivia has been choosen to be the Leukemia/Lymphoma child of the year. She will be the honorary person for the Light the Night Walk to be held September 24, 2005. It should be fun, anyone that wants to join us for the walk is welcome. We will have a "Team Olivia" t-shirts etc... I am working on the design now. It obviously is for a great cause. There will also be the Relay for Life held sometime in June at least in Iowa City. This year we will be able to partake.
We are so proud of our Miracle Girl. I know I say that often, I just can't help myself.
We now know that Olivia's next procedure will be April 13th, she will have a spinal and marrow done by the oncology team and then the cardiology team will come in to repair her heart. We know we will be at UICH the entire day and possibly over night. It will all depend on how well Olivia recovers.
I have to run for now, but just a quick update. Take care and God Bless.

Monday, February 28, 2005 12:08 AM CST

Today we have so much to celebrate!!!! Olivia is doing so well, a year to the day since her diagnosis. Miracles do happen.
It really is hard to believe that it was 1 year ago that our lives changed forever. Olivia has been such a trooper through thick and thin. She knows so much for a 5 year old. I anticipate her being in charge of her kindergarten class, it should be real positive for her. Hopefully it will boost her self esteem being the leader and all. She loves Patti's but I think she gets somewhat bored. Olivia is the oldest of the girls, she holds her own with the boys I think. I am sure since Olivia has been around adults for so much of this last year it will have lasting effects.
We intend on having a true celebration at some point. Maybe the beginning or middle of May. Right now we have to focus on having some fun and then getting through Olivia's surgery in April. One thing at a time.
I will add more later. Pictures should be soon.
Take care and God Bless.

Thursday, February 24, 2005 4:51 PM CST

We are just leaving UIHC, Olivia wanted to stop up to the 3rd floor and see everyone.
The preliminary results of her spinal are complete and everything looks fine. What a relief for all of us. Her blood work looked great too, all her numbers are where they should be.

It will be one year ago on Monday the 28th that Olivia was diagnosed with (AML) leukemia. She continues to be such an inspiration to us, with all that she has endured over this last year. We are truly blessed to have her.

We still have some obstacles ahead of us. After yet another discussion with the pediatric cardiology staff, they have finally set a time for her PDA (Patent Ductus Arterious)to be repaired. Sometime around April 24th. The surgery is much more complicated than we first thought. Probably 2 to 3 hours for the surgery, they insert a catheter to correct the situation. She may have to stay over night at the hospital, but we are going to have the 1st appointment of the day and hope to get home that evening. We will cross that bridge then.

Look for new pictures real soon. I have some way too many photo's to get in order at home. I have the photo albums but just need to find the time to get them in there.

Thanks to everyone for your many thoughts and prayers.

Thursday, February 24, 2005 8:38 AM CST

Olivia will have a spinal today at UIHC. We pray for clean results. I know we will. The anticipation is almost too much. Olivia can't eat before hand and our appt is not until 12 with her primary Doctor and then the spinal follows at 1pm. She knows the routine, but I just wish she did not have to go through it. We will make it. God is on our side. Prayers are answered and we will continue to keep the faith.

We are going to see Disney on Ice this weekend. Looking forward to that. I must go but will add more later. Pictures are on their way too.

Friday, February 18, 2005 7:55 AM CST

Hi everyone!!!!
Just a quick note, we are still winding down from our trip. We will be visiting Grandma and Grandpa this weekend. They want to hear all about our vacation and see pictures too.
We are preparing for next Thursday. Olivia will be having a spinal tap done and we will again discuss when we will fix her PDA (heart) concern. We thought that we were taking care of this next week but apparently not. They ran into a schedule snafoo. (Imagine that at UIHC ???)

I am working so I have to cut this off. Look for pictures probably next week unless I have a chance before.

Tuesday, February 15, 2005 7:49 AM CST

We are still unpacking and trying to find room for Olivia's new things. You just can't have too many Disney items right?? We have so many pictures to get developed yet, over 400 to be exact. They start with Dance Marathon and end back here in Iowa. I am sure we have some pretty good shots.
I will update the web page as soon as I can, I have so much to do now that we are back. Some letters to write and a few thank you notes-that type of thing that just takes time. I will somehow manage. Thanks for all the many wonderful emails. Olivia loves to have me read them.
More later everyone!!!!

Monday, February 14, 2005 12:20 AM CST

We are back!!!!! Wow, what a wonderful vacation. Olivia had a great time. She wanted to see the Haunted Mansion first thing at Disney, so that's what we did. More than once. She also is a big fan of Splash Mountain (the log ride). We of course rode that several times too. We were everywhere, Magic Kingdom, Animal Kingdom, Epcot, SeaWorld, Universal Studios. You name it we were there. The Give Kids the World Village was so awesome. They cator anything and everything towards the kids. Olivia had a banana split for breakfast Saturday before we left. The trip was all for her, what ever she wanted she pretty much got. We are so blessed to have an oportunity like this. I kind of broke down the very first day there just because it is so overwhelming. Emotions run high sometimes when you least expect it. We were honorary cast memebers at Animal Kingdom, they asked us to be in the parade on a float. That was so cool, everyone waving and staring up at us, a kids dream for sure. We saw fireworks over Magic Kingdom, and made wishes at every fountain or wishing well. I did not want to come home. A couple more weeks would be just fine.

Dance Marathon was a lot of fun too, next year we will be more prepared. They are such a wonderful group.

Also thank you to Make-A-Wish.
I will add more later.

Friday, February 4, 2005 12:52 AM CST

Orlando here we come!!!! We are so ready to get the heck out of here. Weather in Orlando will be in the mid 70's according to the internet report. Oh won't that be miserable!!!! I am not yet packed but will throw everything into the bags and go when it comes right down to the wire.

All of you Dancers get ready the Marathon is about to begin. Maybe a little excercise is just what the Doctor ordered. I know for me that has been put on the back burner, but intend to fix that once the vaca is over.

Have a great week and we will be sure to update after the jet lag wears off.

Thursday, February 3, 2005 3:40 PM CST

We are so excited and ready to go to Disney.The count down continues. Before Disney we will be going to Dance Marathon Friday and Saturday. What a great time that will be, just to see all of the families and the wonderful Dancers. We are pretty pumped for the whole weekend. Sleep will have to come later.
Olivia has also reached a milestone, no more medicines, she finished the last of them last night. A bittersweet moment for us. We are coming upon a year since Olivia's diagnosis, sometimes it scares me but then I also know how blessed we are to have gone through so much and the outcome so positive. We thank God every day.

I will update soon.

Tuesday, February 1, 2005 12:23 AM CST

Olivia is officially a princess, the Make-a-Wish gals stopped over last night for some final paperwork etc... They brought Olivia a beautiful princess dress with tiara and earrings included. She wore it last night and then again this morning to Patti's. I sent a change of clothes for after the show. Olivia was showered with so many nice things for her trip, they really know how to spoil a kid. We are so excited for our trip, the bags are not packed yet but the list is made.

I must cut this short, just thought a quick update would be nice.

Tuesday, January 25, 2005 2:45 PM CST

We are counting the days until departure. We will meet with the Make-a-Wish gal sometime this week. They bring all the goods, like the tickets, etc... Also the girls both get some goodies before we go. Kids are made to be spoiled right?? What a wonderful treat for everyone. I intend to take plenty of pictures. We have made arrangements for "Chocolate" to stay with the neighbors. She likes it there as they have a dog to keep her company. I think Chocolate will need a therapy at some point, she has traveled alot since she came to live with us back in July. I am not sure she knows where she lives.

Olivia has one more week on her meds. Yeah!!! I know I repeat myself sometimes but this is really a big moment for us especially Olivia. I will update later.

Monday, January 24, 2005 7:59 AM CST

The count down has begun for Disney, Olivia is so excited about this. It ranks right up there with Christmas in her eyes. I just hope the weather holds out for us and Florida is at least in the 70's or higher.

Olivia is doing real well, I have been trying to keep her out of the cold and away from others with obvious colds etc... So far so good. Olivia had company this weekend, Dave's sister and brother-in-law. They brought her a Christmas gift, a spongebob game. She loves it. We played it a couple of times already.

We just have this Mon-Tues-Weds and next and then we are done with Olivia's meds. I almost forgot to take it to Patti's this am. That will be so wonderful. I have to cut this short but will update soon.

Wednesday, January 19, 2005 9:10 AM CST

Today is a great day for us, all of Olivia's labs results looked good from yesterday. We spent the entire afternoon at the clinic at UIHC. After Olivia's labs were done we discussed her next appointment for her next spinal and to fix her PDA (heart issue). They have decided to have both procedures done sometime the end of February. We want them to coordinate the two so she will only have to put under once. For her labs Olivia had to have a poke in the arm since she no longer has her central line for access. She was pretty apprehensive at first but with the help of the Child Life staff we managed. She of course said it was no big deal after it was said and done.

The other great news is she only has 2 more weeks of her medicine that she takes only on Monday's, Tuesday's, and Wednesday's. That means that when we go to Disney we won't have to take anything but us. Yippee, we are celebrating for sure. We have so much to be thankful for.

Olivia is so excited about the trip, she even dreams about it. She said she dreamt about rainbows and log rides. That is what it is all about.
I finally had a chance to update Olivia's pictures so take a look. I will add new ones after our trip and the Dance Marathon. I just have to figure out the digital camera first.

I just wanted to share our news with all of you. Please pray for some of our other friends at UIHC that are still going through treatment. Cameron, Taylor, and Corinne just to mention a few. Thanks.

Thursday, January 13, 2005 8:07 AM CST

Have you had enough of this weather yet??? We sure don't get to be outside like we would like to. Just a bit too damp and cold. I want to keep Olivia as healthy as possible before we go to Disney. I have started to make a list of some of the things we need to take like sunscreen, swimsuits, shorts, and who knows what else. I need a crystal ball to see what the temp will be in Florida. I hope mid 70 to high 70's, as long as it's warmer then here. Olivia has grown so much this last year, I don't even know what fits her anymore. She already has her opinions as to what she wants to wear and what she thinks looks stupid. I can't wait for her teenage years. Ha ! Ha !. That is when I will need the advise. Not that I don't need any now.

Olivia sure does not miss her central line or any of that. She continues to be on one medicine twice a day but only on Monday, Tuesday, & Wednesday's. I don't know for sure how long we will need to continue that. She needs to get the 2nd part of her flu shot and then at some point her last 3 shots before attending school this fall. She will also be able to start going back to the Dentist for regular check ups etc... I have to verify with Dr. Radhi when it is ok for all of this.

It is hard to comprehend all that has taken place over this last year. Olivia has come so far since her diagnosis and conquered so much. Sometimes it seems like this never happened and then other times it is all to real. We know God will take care of us no matter what. I try to embrace what we have and take advantage of every minute we are given. There are times that are difficult, sometimes we struggle with getting into a routine and adjusting back to reality. I find it hard to discipline Olivia even though I know I am not doing her any favors by letting her get by with things. I think time will be the answer for us.

Remember if you have a chance to give blood and are able to it can make all the difference. I know at work we have an annual blood drive this coming Monday, so I will give too. You never know when someone you love may need it. Thanks!!

I better get to work. More yet to come.

Monday, January 10, 2005 1:56 PM CST

Olivia is doing real well. She wants to be outside in the snow most of the time. She did go sledding with the neighbor boys this last weekend. She had a wonderful time and seems to be fine. I know we will be going again sometime. We are somewhat preparing for our Disney trip a month from now. You know, what to pack and not to pack type of thing. I say take as little as possible come home with all of her new things. Weather of course will be the big factor.

We go to the clinic on January 18th, just for labs. After that we don't know the rest of her schedule. We will take it as it comes. Stay warm and we will update soon.

Tuesday, January 4, 2005 9:25 AM CST

Quick note, whoops we are not going to Disney until February 6th. My bad, I guess when one hurries it just does not pay.

Olivia is doing great and at Patti's. It will be good for her. She had a marathon bath last night. Pretty nice to not have the hardware to worry about. I must go. More later.

Monday, January 3, 2005 9:16 AM CST

Olivia gets to go home at last. The best news of all is she is getting the picc line out. This is big stuff, Olivia will be completely free of all hardware. Yeah, for Olivia. This will be so cool to not have any dressing changes, or daily flushes of her lines. A milestone for sure. Just think she can have a shower or bath or even swim without having to worry about anything. Also Chocolate bothering her lines was a concern.

Dr. Radhi (her primary) gave us the news just minutes ago. We are so happy and feel a sense of relief. This year is definitely starting off on the right foot. And pray it will continue in this direction for sure. Ironically enough we almost did a dressing change on the picc line this morning, glad we did not put her through this for nothing.

Olivia's counts look real good and she has recovered from the line infection. She will be on an oral antibiotic for 3 days only. We are scheduled to return on January 18th for labs only. We have not yet discussed the PDA (heart) situation and when we will have that taken care of. I have been reading some on the internet about this. Olivia's PDA is not as severe as some but they feel it should be fixed. The main concern is an infection in the heart. Of course children that are immune compromised don't need any source for infection.

We are so pleased with Olivia's progress and will now prepare for our trip to Disney, January 6th. The Dance Marathon is that weekend too. We will attend at least the opening and closing ceremonies. They always asks families if they wish to tell their stories etc... I know we will be part of that. Olivia is practicing her magic for the event.
The Dance Marathon is such a wonderful organization and are such a great support system for the families and kids.

I had to share our wonderful news with all of you. We are so thankful to everyone for your support and prayers. Olivia should be an inspiration to all of us. We are so proud of her.

Sunday, January 2, 2005 10:36 AM CST

We just found out we will for sure not be going home until Monday. Darn the luck. So another day of trying to entertain each other, thank goodness for games on the computer. Olivia does not seem to mind, I think we are getting bored. It is hard when you have so much to do at home but can't get there. I guess it will be there when I arrive.
Thanks for listening. More updates to come.

Sunday, January 2, 2005 9:04 AM CST

Way to go Hawks!!!!! What a game, we watched from our room and the lounge on this floor.

Olivia is doing great, we are trying to convince the Dr. that we should go home today instead of tomorrow. Olivia will only be on one antibiotic an oral type. So really we would just need to wait for that to be filled at General Pharmacy and hopefully be on our way. We are waiting for the Dr. to do rounds this am. The residence have of been in as usual bright and early.

I am in the activity room and Olivia is riding the bicycle between here and our room. She has already had breakfast and thinks she wants some popcorn now. Hard to believe it is only 9am. I typed an entry yesterday which seems to have disappeared, and no it was not white writing this time. It shows up from here but not when I look at journal history.
Oh Well.

I hope we get out of here, I have so much to do at home. We need laundry soap etc... etc... At least tomorrow is my Holiday off work. This would give me a good start on regrouping and getting ready for Tuesday. Olivia should be able to go back to Patti's then. Poor little Chocolate misses everyone so much. I think she is at the neighbors right now, thank you Julie and family. At least Chocolate will have someone to play with. They also have a dog "Lucy" they can keep each other company.

Olivia is singing and having fun. She slept real well last night so I know she is raring to go for the day. Take care. We will update you later when we know more.

Saturday, January 1, 2005 10:09 AM CST

Good Morning Everyone!!!!
We just found out we get to go home on Monday. Olivia will be on oral antibiotics of some kind. They have to discuss if the picc line will remain in or if they remove it before we go. It is a little different than her central line. I guess I was just used to the central line, the picc line is on her upper right arm and seems more suseptible to the outside world. It could easily be pulled or get caught on something and could also get an infection. I know they have many patients with these, so we will just need to be careful. It would be nice to not have to worry about it so I am leaning towards removing it.

Olivia ordered chocolate chip pancakes with chocolate syrup for breakfast, what a combo, she also wanted a double chocolate chip cookie and chocolate milk. I am thinking we will be full of spunk today. She has been heplocked which means she does not have her line hooked up to the pole. She will be free to run.

Olivia wants to say GO HAWKEYES!!!!!!
We will be watching the game somewhere here at the hospital. She wants to play some computer games so I will close for now. I also plan to update her pictures when I have a chance. I am waiting to get some film developed etc...

Happy 2005!!!!!!!

Friday, December 31, 2004 12:47 AM CST

Olivia and I are in her room trying to entertain ourselves. She is currently pumping up the blood pressure cuff on the wall. As you have guessed we are not getting out of here. Maybe Monday, they have not identified one of the bugs she had growing and are not comfortable letting us go until they know for sure she is getting the right antibiotics. She has not had any fevers etc... so my guess would be that whatever the bug the antibiotics seem to be working. But I know they must cover themselves too. The positive note is as long as we are here the picc line will not be as worrysome for me and the antibiotics are taken care of. It won't be much fun to celebrate the New Year in here. I will take the good news on Olivia's counts and results and hold on to that, instead of dwelling on getting out of here.

Olivia is starting to get restless so I best go for now.
Go Hawkeyes!!!!!!!!!!

Thursday, December 30, 2004 6:35 PM CST

I am back to give a quick update. Olivia and I have been playing all day. We went for a walk down to the 2nd floor where we happened by the clinic. It was pretty quiet in there so we stopped in to get some change for the pop machine and say Hi to everyone. Of course Olivia came out of there with some gum and some mint sticks. She is just too spoiled. We obviously won't be leaving today. In fact when we were in the clinic we saw Dr. Radhi (her primary) he said what are you doing here, I said we are trying to escape since we don't know when we get to go. He did not know either, since he was not on rounds today he probably did not have a chance to follow Olivia's stuff today. We could possibly get out tomorrow, being New Year's Eve they forget we are here. I did learn a little bit about her picc line today, our home health company (Option Care) will do the dressing change on it for us but I will still need to administer the antibiotics until we are done with those. We still don't know if they will run 7 or 14 days. The picc line will come out when the antibiotics are done. Here I am again playing nurse Yikes!! It will be a piece of cake, just little sleep again which actually I am used to.

Everyone have a safe, Happy New Year's Eve, watch the consumption or at least be safe doing it. Also Go Hawkeyes on Saturday!!!!!!!!

Thursday, December 30, 2004 10:39 AM CST

Just a quick message. Olivia is in the Press-Citizen news paper today. This is the Iowa City paper for those that may not know. We had a visit from the Iowa Hawkeyes Men's Basketball team yesterday, the rest is in the paper. We have no idea when we are going home. This will be determined later today. Olivia is playing the in the activity room right now. She seems to be more energetic and acting like Olivia today. I am going to take a shower now. I have to work this in when I can.
I will add more later.

Wednesday, December 29, 2004 2:32 PM CST

I just talked with Dr. Radhi and the news is wonderful. Olivia's spinal/marrow results show no blasts (bad cells). I am over joyed to hear this news. Olivia is doing ok, she is getting used to her pic line and the fact that her other line is gone. Olivia had a slight fever last evening. She was so so tired she slept most of the evening and then through the night. Right now she is playing in the activity room and earlier went to the library for story hour. She is still pretty worn out from the busy Christmas weekend of course yesterday's many procedures. She also has a cough that we will keep an eye on.
Hopefully we will be home Friday, she must be fever free for 48 hrs before we get to go. We may need to continue her antibiotic at home. We hope to watch the Hawkeye game at home or possibly with the neighbors. We will see. I am so thankful that all of Olivia's procedures are done for now especially the spinal and marrow. At some point we will be taking care of her PDA Heart problem. I would imagine in January. The really nice thing is that when we go to Disney Olivia can swim or whatever without worrying about her lines getting wet.
I better get for now, I just had to share our wonderful news with everyone. Thanks for the many prayers and thinking of Olivia.

Tuesday, December 28, 2004 7:53 PM CST

Much has happened since just yesterday. Olivia was doing so wonderfully without any fevers until around 4am this morning. She spiked a temp and had the chills and then sweats, the poor baby did not get alot of sleep. This morning she slept in until around 11:30 am, a much needed rest for her. When our primary Dr. came in we discussed her situation and the infection in her line. Dr. Radhi and I decided that taking out her central line was best. He was not sure when but this week at some point, well shortly after that our nurse Carissa came in to say taking her line was scheduled for today as an add on. It was around 12:30 they came to get us to take us up to OR for the surgery. She had her line taken out and a pic line implanted (this is in her right arm and should stay in at most 3 months)This line will replace the other and is how they access for blood work and her antibiotics. While we had Olivia under they also decided to go ahead and do her spinal/marrow today instead of waiting until January 18th. The original date, this is a good thing because Olivia would only have to be put out once for all of this.

The best part of this happening so fast is we did not have any time to dwell on it. Olivia is still pretty sleepy now after such a long day. I did not get to see her until around 4pm, and Dave could not be here because he was at work. It was hard on both of us, but we know what a strong girl we have. We won't know the results of her spinal/marrow probably until tomorrow. We pray to God that this will be clean and cancer free. We have no reason to believe but what we will receive good news. Olivia's numbers are fine. We are all exhausted and could use some sleep. We don't know how long we will be in this time. Now that the line is gone they will still give her antibiotics and if she stays fever free it could be Thursday. It seems really odd to look at Olivia's chest and not have the lines hanging down, I know it must feel weird for her. They had become part of her for the last 10 months. I'm sure we will adjust quickly. Especially since we won't have the daily flush or weekly dressing change. The pic line will have both the flush and dressing change but that may come out before we even go home. As far as future spinals and marrows Olivia will have to have pokes to put her out. I guess it is the lesser of two evils in this situation. One thing at a time.

I better try to get some rest. Tomorrow will be a new day and I am sure Olivia will be feeling better. Please say a prayer for our brave little trooper. Thank you and God Bless.

Monday, December 27, 2004 11:07 AM CST

Santa found Olivia just fine. The look on her face was priceless. Santa only wrapped one gift so the rest were all over under the tree. She was pretty exicted. We had cookies and milk for Santa which he seemed to have enjoyed. After we played with all of our new things we packed it up and headed for Grandma's house Saturday afternoon. We had our family gathering on Sunday, Santa found us their too. Everyone had a great time including our furry friend Chocolate.

We had planned to stay at Grandma's on Sunday night also. After everyone went home we were starting to settle down somewhat for the night. I did Olivia's flush of her port around 8:30 shortly after around 9:15 or so Olivia started to chill, and her teeth were chattering. This is a tell sign for her that she is getting a fever. Sure enough she started to spike a temp, we called up to UICH because of course any temp of 101 means we are admitted. She was around 103. My main concern was getting here quickly and safely for Olivia. So we ended up coming by ambulance, I was worried if her temp continued to rise we would be in trouble. By the time we arrived at UICH is was 12:20 am. We got all settled so they did the normal draw labs and run cultures to see the source of the fever. We won't know for sure the results of the cultures until probably Tues am. We know we will be here at least until Thursday. Olivia seems to be doing fine, she did not have any more fevers and is acting herself. She had chest x-rays this am already. If this is another line infection they may require that her port is removed, usually after 2 infections in the line that is the prodical. We will have to wait to see.
At least we had a wonderful Christmas and could be home.

I feel very unorganized with all of the new things and then leaving in such a rush from Grandma's. Dave went home to get some things and bring things I forgot. My folks are coming up today to bring Chocolate and all the gifts etc... from their house. We are all pretty tired and were very concerned for Olivia but do feel a sense of relief now that we are here. Oh yes, her results from her blood draw are good. Her counts look great, white, hemoglobin, etc... all is good which is a very good sign. Olivia does have a slight cold and perhaps with all of the excitement and lack of sleep her body is just tired. We are in room 3339 on 3JCW, our phone is 353-9464.

I need to get going for now, I just wanted to send a quick update. Happy New Year, be safe and healthy. Say an extra prayer for Olivia.

Thursday, December 23, 2004 10:16 AM CST

Help, I need to find the Krabby Patty Grill (Spongebob)somehow. I have only seen it on ebay, the bids are rather high. I know one little girl that would be very happy to see that under the tree Christmas morning. Those elves have found all kinds of things for Olivia, now they must really get to work. When they shop they just can't help themselves, when they know there is something she wants they want her to have it. This will probably be the only time she can get away with this. Christmas is for kids no doubt and this year she deserves everything she gets. We will wait to reprogram her after our trip to Disney in February.

Remember the best gift one can give is to be a donor of blood, platelets, or bone marrow. So many families benefit from this small gesture.

We wish all of you a safe, healthy, and Happy Holiday !!!
God Bless!!!!

Love, Olivia, Roberta, David, & Chocolate

Tuesday, December 21, 2004 12:10 AM CST

Olivia is so excited waiting for Santa to arrive. I am not sure that Santa has everything on her list yet. He is trying to find a Krabby Patty Maker (Spongebob) fame. He has not come across one yet, so if any of you elves know where to go let Santa know.
This will truly be a very special Christmas for all of us. Olivia is doing remarkable. We know now that Olivia's heart surgery will wait until they remove her port. That is still undecided for now. We know for sure we have more spinals to come and the port would be a plus, but then again having the port gone would also be wonderful. We will wait this out and see what out thoughts are after the 1st of the year.
Right now we are focused on a fun Christmas and enjoying our family time.
God Bless and Merry Christmas to all of you!!!!!

Friday, December 17, 2004 8:00 AM CST

We have a great report from Thursday's visit to the clinic. Most importantly is Olivia's counts look wonderful. She has all the right stuff. Even though she has had this cold her body seems to be working on it's own and recovering well. The other early Christmas gift from above is that Dave is potentially a bone marrow match for Olivia. We were both tissue typed back in September when she relapsed, but had just not found out the results. The chances are real slim that a parent is a match. Normally one parent is 50% and the other parent is 50% of the childs (tissue)genetics, a sibling is usually a 1 and 4 chance of being a match. This is so wonderful, not that we will ever need to have a transplant but what an insurance policy to have in case. I find all of the cell and tissue stuff quite interesting. Apparently Olivia has all of my outward physical attributes and Dave's genes on the inside. Who cares we just know what an Angel she is to us and are very proud of her. We are not slated back now until January for Olivia's check on her spinal/marrow.
I must cut this short but intend to add later.
God Bless and Happy Holiday's.

Wednesday, December 15, 2004 7:59 AM CST

We are going to be back at UIHC on Thursday. We will discuss with the Drs. our next game plan and have her counts checked. Olivia recovered on her own from a cold. That is wonderful news for us. She is so excited about Christmas and keeping secrets etc... Rather hard for a 5 year old.
Olivia has new glasses, two reasons first she had a huge scratch in her lense that could not fixed and secondly her little friend Chocolate chewed up the ear piece down to the metal. She is happy with her new look. I am so glad she will wear them.
I need to go, but I will update soon.

Tuesday, December 14, 2004 10:16 AM CST

We only had a consultation yesterday and not Olivia's heart procedure. The Doctors are going to figure out the game plan for Olivia. They are concerned about her still having her port in and then adding the coil with the heart surgery. If the port would happen do get an infection that would directly affect this coil and could potentially be life threatening. They want to coordinate the heart procedure with either her spinal/marrow or removing the port. This would mean only using anethesia once. So for now about all we know is that Olivia's heart is doing fine and has not had any further damage due to medications or fevers.

Kind of disappointing to not have this taken care of now but we will move forward from here. We need to do what is best overall. We have to back to UIHC on Thursday for labs and a regular visit with her primary Dr.
Olivia had a bit of a cold but seems to be fighting it off. I will update when I know more. Thank you for all the emails.

Wednesday, December 8, 2004 7:58 AM CST

A quick note. We made it to the North Pole and back ok. Olivia got to see Santa. We rode the train all the way to Santa's house, he was very happy to see Olivia. She told him she wants a Krabby Patty Maker (SpongeBob). I am sure Santa will find one. We went to the Iowa Women's Basketball game Sunday, Olivia met Herky. We sat behind the band. She thought that was pretty cool, she told me she now wants a horn for Christmas. Don't know what kind but a horn.

Olivia has been fighting off a cold, mainly runny nose and a cough. That certainly keeps us on our toes. It stinks we have to be so so careful with everything now. It's like a paranoia set in, but we just can't be to careful. Other than that Olivia is doing real well. She keeps asking how many more days until Christmas?

I am trying to mentally prepare myself for Monday's procedure to fix her Heart problem. Olivia does not know the whole picture yet, I did not want to worry her. My understanding is this can be done in the clinic. In the big scheme of things this is minor compared to what Olivia has already gone through none the less this is surgery. The procedure is fairly common and I am sure they do this everyday. I have to believe God will get us through this. It is a test for us, now is the time to continue to find strength within and move forward.
Olivia is such a strong little girl, she is determined. I know things will be fine. Say an extra prayer for us.

I will update soon. Happy Holidays!!!!!

Friday, December 3, 2004 12:31 AM CST

We are all geared up for the Polar Express tomorrow in Mt. Pleasant. Olivia should have alot of fun. We still need to see the movie, but thought we should wait. Thanks to the Dance Marathon we will be going to a Christmas party on Sunday. It should be fun for everyone.

Happy shopping, I must get back to work.

Wednesday, December 1, 2004 7:54 AM CST

We had a wonderful Thanksgiving with family. Olivia was soooo wound up and full of spunk. She had many days of fun at Grandma's with her cousin Tori. Those two are pretty crazy girls. I am so glad they have each other. We are going to sit back and enjoy time at home now. Olivia is off the hook until December 13th for her heart procedure. We pray that will be smooth sailing. The way they talk it should not be a major deal. In the big scheme of things I suppose that is true. Olivia will once again prevail.

This weekend we are going to the Polar Express train ride in Mt. Pleasant. I guess the kids get to go to the North Pole and see reindeer etc... Sounds like fun. The weather sounds ok too. We have yet to see the movie, but will try to fit that in. We also have the Dance Marathon Christmas Party and we have Dave's Christmas party. The normal everything at once type deal. Thanks to all of you for the wonderful journal entries. What a great tool and cheap therapy for me.

Happy shopping, and we will update soon.

Thursday, November 25, 2004 2:20 PM CST

Happy Thanksgiving---

We made it home a week ago Wednesday night. To return again to UIHC on Thursday for Olivia's spinal. The results were excellent, all is clear and her counts looked great. We have made it through another hurdle, and are so thankful to be home with our family for Thanksgiving.

After returning home from UIHC we had to give Olivia 2 different antibiotics 3 times a day. Eight am, Four pm, and then again at midnight. Olivia just finished them last night at midnight. Yee Haw, she was on them for a total of 14 days. To say the least we are glad we are done. The positive is that Olivia's body is working and was able to fight off the 2 different bacteria's she had growing in her line.

This last Monday we went to the clinic for them to check her counts and have an echocardiogram. Olivia's counts are looking good still and the echo looked good too. We have monitered her heart closely through her treatments because Olivia has a heart condition called a PDA. (a condition in which one of the valves in her heart does not close properly). Normally this closes at birth but Olivia's did not. The nurse assistant called and said our primary Dr.Radhi would like for us to go ahead and get this repaired now, since Olivia is doing so well. The PDA could cause complications later so they think it best to do it now. We are scheduled for December 13th and they apparently can do this in the clinic, with the peds cardiologist. We will just have to brave through this. Again just one more hurdle. Olivia has overcome so many.

The long term outlook is for Olivia to have a spinal/marrow in January and then again in March. Also in February she would have just a spinal. These are all just follow ups to make sure the cancer is not there. Dr. Radhi is being very cautious and wants to keep close tabs on Olivia. The leukemia she had AML is pretty relentless and unforgiving. We know we are so blessed to have come this far and to have conquered so many stumbling blocks. Olivia is a very strong, smart, and spirited little girl. (Thank Goodness)

We are truly blessed, and will continue to cherish every moment.

Wednesday, November 17, 2004 9:34 AM CST

Hello-

We have some good news, we get to go home today. We will be finishing Olivia's antibiotics at home. I will be giving them to her 3 times a day for the next week. I am waiting for instructions and to go to pharmacy, then I am going to work this afternoon. I guess it was time for some continuing education on my at home nursing skills. No big deal, at least we get to be home. Olivia and Mom will be escorted home by my sister-in-law Linda. How nice is that. We do come back tomorrow for Olivia's spinal tap. She will not have any treatment only the spinal. We pray all is clear. After that we don't know yet our next course of action.

We will just enjoy our Thanksgiving at home. I would say we have alot to be thankful for. It has been almost 9 months now since this journey began. Sometimes it seems like just yesterday and other times it seems longer. Last night we were choosen to talk to 4 Dance Marathon groups. We explained how important they are and show them first hand from our perspective what they mean to the many families up here. Olivia of course loved the attention and talking to the college students. She is such a night owl, here we are ready to drop and she is raring to go. We are so happy she has the energy to do so but at the same time rest is so important for her. Who needs a schedule anyway.

Have a great Holiday and I will try to update after tomorrow. Please keep Olivia in your prayers. Thanks.

Tuesday, November 16, 2004 7:57 AM CST

Just a quick update, Olivia is doing great and we do anticipate being able to leave before the 14 day window is up. Possibly by the end of the week. I am working so I don't talk to the Docs like I usually would. Olivia has not had any fever since early Saturday am. She looks great and is acting like normal. I must go but will catch you all up later.

Sunday, November 14, 2004 7:02 PM CST

Just an update. Olivia is now room #3339 B, phone # 353-9464. Two postive notes about that, one there is a shower and two the playroom is closer. Mom likes the shower part and I like the playroom. We are going to check with the Docs tomorrow to see if there is any chance of getting out of here sooner than 14 days. That would mean we would be here until Thanksgiving Day or the day after. We have conflicting info on this. One Doc said after 7 days go home with the pump and I could give here the remaining antibiotic, and the other Doc says she must be here the whole 14 days. The main concern are her kidney's. The one antibiotic is very hard on the kidneys and they want to moniter this. So time will tell all. Grandma made it safe and sound. She and Olivia get to play and I will be off to work. We better get settled for the night. I will watch my spelling too, I get in a hurry sometimes when doing my updates. More later.

Sunday, November 14, 2004 10:42 AM CST

Hi,,,,,,,,,,,,,,,,This is Olivia speaking. My mom and I are typing together. I am feeling much better now. We have to stay here in the hospital for 14 days. So no luck on getting out of here soon. On a positive note we are going to change rooms sometime today, this one will have a shower in it. I am not sure yet which room, we will let you all know later. Because of the type of bacteria in my line they are making me stay here. They have to measure my urine and make sure I pee ok. I don't mind being here, because I get to do activities. I will miss my friends at Patti's but I will be back as soon as I can to see them. I miss Chocolate too, and I know she misses me.

I am back to myself and giving the Docs and nurses a hard time. They love me soooo much. I had breakfast and now am thinking about lunch. My Grandma is coming to see me later. My Mom and Dad will go to work tomorrow while Grandma and I get to have fun. So far I have seen most of my favorite nurses. They all think my hair is getting longer and can't believe how waivy it is. My Mom and I decided we won't let it get as long as it was before.

Bye for now, I need to get playing.

Saturday, November 13, 2004 10:57 AM CST

Here we are back in the hospital. Olivia had a runny nose starting on Monday and then developed a slight fever on Wednesday night. On Thursday I thought I better bring her into the clinic, so we came in and everything looked great. Her counts are real good all seemed fine. So they sent us on our way and said keep and eye on her. As we proceeded back to Patti's Olivia said she was cold, this is never a good sign. By the time we got to Patti's Olivia was shivering and shaking so we took her temperature and she was at 105, she also got sick. I called back to UIHC they said we are admitted and to come back asap. I went home quick to let Chocolate out and grab some clean cloths for Olivia and we made our way back here. Since then we now know that she has a bacteria growing in her line (port). This happens quite often, we have just been lucky. So what they have to do is treat this with antibotics for 14 days. She will probably have to be in here for the duration. Because the one antibiotic is hard on the kidney's and they need to moniter this. If all clears quick and they are comfortable sending us home we may get to go with a pump so I can administer the antibiotic at home. We will just have to wait on this.

We are scheduled to be here on Thursday for a spinal tap, no chemo involved just the spinal. I am sure we will still be here then. Olivia is of course being a little trooper. She knows the drill, of course the longer we are away the harder it is for all us to come back. The room we are in this time is ok but no shower. Yikes what will I do? They have a public shower, but I will probably shower at home.
Who knows maybe we will get out of here soon. Our puppy "Chocolate" is at camp (sleep over) until we get home. She is at one of Olivia's daycare friends house. That is so nice to have good friends, the little things people do really help out alot.

I guess weather wise we aren't missing out on anything, so being here at least we can save on our heat and water bills. Just kidding we would much rather be home. We still have lots of leaves to rack yet. Somehow they blow in from everywhere.

We are thankful we know the source of Olivia's fever and can treat accordingly. The first night I was pretty worried because we had no idea where the fever was coming from. The leukemia does not factor into this at all. As long as she has her port in there is a risk for infection. We don't know for sure when they will let us take it out. Since her last scheduled spinal is this coming week maybe we can discuss this and have a some plan in place. Some Docs say 3 months after the last chemo treatment, others lean more towards a couple of months. We have a say in the matter too, but it is definitely a catch 22. Once this comes out she will have needle pokes in the arm or finger, but then again once it's out no more dressing changes or daily flushing, and the risk for infection is gone. We will have to see what they say. Keep Olivia in your prayers and hope we get out of here sooner than later. Take care and God Bless.

Tuesday, November 9, 2004 7:49 AM CST

Olivia is doing so good. We are so happy to have some normallcy back in our lives. She is looking forward to Christmas now, making her list for Santa.

I just wanted to let you all know where we are on Olivia's journey. We are so proud of her, she still amazes me with her strength and determination. She is such a fighter. Thanks to all of you for the many prayers.

Friday, November 5, 2004 7:55 AM CST

Just a quick update. Olivia's eye appointment went just fine on Wednesday. Her vision is improving since her last perscription, they did not see any other issues or concerns. So now we just have to get through November 18th the day of her next spinal. She will only have a spinal without chemo. We are so thankful, she is doing just great. We have been making arrangements for Olivia's Make-a-Wish. She wants to go to Disney in Florida. We are planning on the first of February sometime. It is hard to schedule this far in advance. Olivia gets to take her cousin along. (Tori)
They will have such a great time. What a great fun thing for the kids. And us too!!!!

I better get to work. I will catch you all up later.

Tuesday, November 2, 2004 10:42 AM CST

I talked with the clinic and Olivia does not need to come in for any lab work or anything until out next appointment on November 18th. We do go to opthamology tomorrow for them to check her eyes. They say the leukemia can hide behind the eyes sometimes. So one more trip to the hospital. No big deal we are pretty much on auto pilot. We are so thrilled to not have to be there.

Olivia is doing so well it's almost scary. She is like most 5 year olds, happy go lucky and testing her Mom and Dad as much as possible. She is going to spend this Saturday with Shannon one of the Child Life Girls. Olivia is pretty excited about this.

I need to move on to a meeting, more later.

Monday, November 1, 2004 7:48 AM CST

Good Monday morning!!!!

I am still celebrating our good news on Friday. Olivia is doing real well. She decided on her Butterfly costume. We went trick-or-treating with the neighbor boys. Good thing the weather held out for us. She had a great time. Today she is with another one of her friends from daycare. Patti had to have the day off. Olivia was really looking forward to spending time with Kaitlyn and Kelsey. Their mom Lisa was so nice to volunteer her day.

I forgot to mention that Olivia can stop taking one of her medicines as soon as the prescript runs out this week. She is ok with that too.

Take it easy on the Halloween candy and stay dry.

Friday, October 29, 2004 3:54 PM CDT

Good news !!!!! Good news !!!!
Celebrate the day!!! My birthday present arrived!!!

Olivia's test's came back for the spinal and marrow and everything looks fine. She is clear... We are so relieved.
It has been pretty stressful waiting for this news. I might be able to relax a bit. I just had to report the good news.
Happy Halloween Everyone. Thanks for the prayers.

Friday, October 29, 2004 8:11 AM CDT

Olivia made through Thursday ok. She did get sick and recovery was somewhat long for her. She had a long nap which always helps. The preliminary results show only 1 white cell in the CNS (spinal fluid). This is normal, I am waiting to find out today the marrow results at some point today. This was her last chemo treatment in the spinal fluid. We have another appt. on November 18 for another spinal only. Hopefully that will be it for sometime. We continue to pray for her little body to handle the long process of treatment. She is such a trooper.

We have been enjoying the Halloween fun, Olivia loves her butterfly costume. She wore it to the hospital yesterday. She has talked me into wearing an outfit to trick-or-treat on Halloween. I also have a party to attend on Saturday night. I don't know yet what I am doing to celebrate my birthday. Just having Olivia healthy is enough for me.
I will try to update later.
Happy Battitude!!!!! and Halloween!!!!

Wednesday, October 27, 2004 10:15 AM CDT

I have not had time to update for a while. Olivia has been one busy little girl. She is so excited about her Halloween costume and the party at her daycare (Patti). they have it today. Olivia has a Kim Possible outfit (Disney Cartoon) and a Butterfly costume. (Ok she is still being spoiled) but she deserves it.

We go tomorrow for her spinal and marrow procedure. We will probably be there all day. I am expecting only good news. We have not been to the hospital for two weeks. What a change, I know we sure don't miss it. I think they have their Halloween stuff tomorrow too. That should help with Olivia's recovery. I am sure she will want to wear one of her costumes. Say an extra prayer for Livee!!!!

More later.

Wednesday, October 20, 2004 4:09 PM CDT

Olivia is doing great, the only issue we have is adjusting back to reality. We are trying to get back in to a routine of some kind. Olivia is so used to having everything she wants through this whole thing that sometimes we struggle with not getting our way. We have to work through this somehow. I have come to realize I have a true fighter on my hands, determined and relentless at times. That's what it must take for her to have come this far. We are not due back at UIHC until October 28th. At that time Olivia will have a spinal and marrow done. All else seems to be fine. We have not even had to go for labs.

Olivia is loving "Chocolate" we are still working on the potty training. The puppy is a fair weather fan, if you know what I mean. Who can blame her. I will update soon.

Monday, October 18, 2004 11:34 AM CDT

A quick note, Olivia is doing great. She is back at Patti's this week. We don't have to go back to the hospital until the 28th when she has her next spinal/marrow. We are real happy to have a break from there. Olivia had a wonderful surprise on Sunday, some Disney characters stopped by for a late birthday surprise. She thought that was pretty cool. We had a nice weekend with Dave's family. Olivia had fun with her cousins. Too bad they live in Maryland and soon are moving to South Carolina. I must go as I am supposed to be working. More later.

Friday, October 15, 2004 10:07 AM CDT

Ok I must confess, it was not a computer error. It was me, I guess white writing does not show up on a white back ground huh?. So moving on here. We had an appointment on Thursday for Olivia to have a spinal and a follow up x-ray on her chest. Things looked fine, her numbers are good and the spinal was clear. We did not realize but she will continue to have chemo with each spinal. She has 2 more scheduled one October 28th and then again on November 18th. We hope then it will taper off for her. She has been through so much, but continues to amaze us with her spirit and positive attitude. I need to learn from her, just how strong we must be to get through this.

Olivia is still at Patti's and loving it. She has a new friend there, a little girl closer to her age. They have alot of fun together. We also are going to be with Olivia's cousin's from Maryland this weekend. She is going to have a special surprise on Sunday too. A friend of mine has arranged for some real costumed Disney characters to show up at our house. Olivia has no idea, it will be a lot of fun to see her face.

More later, continue the prayers because God is listening.

Monday, October 11, 2004 7:47 AM CDT

Sorry everyone, something happened on Friday when I updated.
First of all we received really good news. Olivia's spinal and marrow results came back clear and clean. We are elated and hope this continues with the rest of her spinals. We go in tomorrow for her labs and then again on
Thursday she will have another spinal. We can't wait for these to be over. We know this is what we have to do.

Olivia went back to Patti's today, it was hard for both of us. I will have a harder time then she will I'm sure. I wanted to pass on the good news and I will update soon.

Friday, October 8, 2004 8:25 AM CDT

It's a sunny day for us. We received the news we wanted to hear. Olivia's spinal and marrow came back clean and clear. Yeah!!!! Yippee!!!! We are so happy, a little sigh of relief for now. Olivia is doing great. Her white count is now at 3 (3000), can you believe that one. When we left on Tuesday from UIHC her count was .5 (500). You can really tell she feels better, her energy level is even more than before. We carved a pumpkin yesterday and had fun with grandma. I have to make this brief. I wanted to share the good news with everyone.

We will go next Tuesday for labs and then again on Thursday for another spinal. Then I don't know what the plan is.
More to come......God Bless!!!!

Wednesday, October 6, 2004 3:54 PM CDT

We did make it home yesterday around 4pm. Olivia has been doing great. I am so happy that she has some time at home where she belongs. We will go to the clinic on Thursday morning. Please say an extra prayer for our little "Angel".
Miracles do happen. We must trust that God will give us strength and courage tomorrow. We will know for sure if Olivia gets the break she deserves or if we have more to go through.

I will update soon. God Bless.

Tuesday, October 5, 2004 1:47 PM CDT

Olivia has been back in her room since about noon. The procedure went real well. She has already had something to eat and drink. In fact she is in the playroom having fun. We just have to wait for them to give us the ok to get out of here.

We won't know anything until Thursday as far as results. If we do I will give everyone a heads up. We are optimistic and hopeful. Olivia has been through too much and pray this will be the last. God Bless!!

Roberta, Dave, and Olivia.

Tuesday, October 5, 2004 10:02 AM CDT

We are up and ready to go today. Olivia is in a great mood, she has been playing games and teasing anyone that comes in the room. We have had plenty of people already. We are just waiting for them to call to say we can go up to Floor 5 for her procedure. We hope they can be on time so she does not have to wait. We will have recovery back in her room here. She normally does pretty good with it. Once she has recouped we will free to go home as long as the paperwork is done. They have started the discharge papers already. We don't have any meds to pick up so that will be a time saver.

Olivia can't wait to see Chocolate. Grandma will be up later this afternoon and bring the puppy. Chocolate is probably confused as to where she lives. Hopefully she will adjust once we get back to a schedule. Alot of adjusting for all of us. We will be back in the clinic on Thursday to see where her counts are and to find out the results of today's procedure. We just have to keep her away from germs etc... the best we can. It would neat if there were a magic spray that we could use before she comes in contact with things. Germs are everywhere and we can't change that.

I hope to update soon, to keep all informed. Keep the prayers coming.

Monday, October 4, 2004 4:39 PM CDT

Another quick update because I have some time. The test from Olivia's nasal wash came back fine. So we were off isolation momentarily, because they want to run the stool sample we are back on isolation until results are known about that. I don't feel we have anything to worry about but it is better to be cautious. So probably tomorrow we will be dismissed at some point. Hospital time could mean anything. Olivia will have her procedure at 10:30 (hosp time). I am pretty sure we will be here most of the day. We are used to it.

Olivia is playing again in her room with yet another child life girl. She will also have another activity yet tonight. Her social life is booming. Olivia is back to her ole self again. We love it.

God Bless!!! More later.

Monday, October 4, 2004 11:14 AM CDT

Another day and more changes over night. We will not be going home today. We are fine with this because Olivia's count dropped back to .5(500) so we need the extra day and time for her. We probably will go tomorrow. We are still waiting results of the nasal wash they did last week, until we know this is clear she must stay in her room. And now they want a stool sample to make sure nothing is wrong in that department. Of course yesterday they would have had 3 chances to get the sample. Today they may have to wait, the problem is she again won't be able to leave her room until the results come back from this. Now why in the heck they did not do this yesterday is beyond me. She has done rather well considering she's been in her room since Friday. With the computer in there at least she can play games. The strange thing is we can walk out in the public hallways but not around our room or playroom area. She always wears a mask etc... Oh well, I am sure they know best right???

We will have our spinal and marrow tomorrow as scheduled. We do expect to go home after that. We pray that Olivia's test results come back cancer free tomorrow. Say an extra prayer today.

Olivia is playing with Kathy and another gal in her room. The child life crew are pretty special, Olivia keeps them entertained as much as they keep her busy. I think they are playing basketball, with what I don't know. I will update when I can.

Sunday, October 3, 2004 12:55 AM CDT

Olivia is doing much better today. She is more energetic and ready to go. Her cough is much less often and her lungs are much clearer. They will be taking her off one of the antibiotics as today was the last day for it. The Drs. did mention possibly going home tomorrow. Mainly because she has not had any fever and her white count is now back up to .6 (600) today. Hopefully tomorrow it will be even higher. Maybe we will have one night at home before we come back on Tuesday for her spinal and marrow procedure.

Olivia is playing games on the computer in our room. It certainly helps her pass the time away. She is still in isolation until we know for sure results, obviously it will have to be tomorrow. I stepped out of here yesterday for a bit to visit some friends at a tailgater. They were just around the corner. Olivia was feeling fine, and the nurse was pretty slow so I thought I would take advantage of the moment.

Most of you have asked along the way if there is anything we need or could do for us. I guess I would say the best thing is to donate blood or platelets if you can. Olivia has needed both on occassion over this 7 month period. I don't where we would be if neither blood or platelets would not have been available. It is a matter of life and death for these children. We can't just assume the supply will be there. So my point is this is something that most can do and does not cost a thing except time. I think of the many families on this unit and others in the hospital that this would be a benefit to.

Ok off the soap box. We appreciate all that you do even the smallest gesture means alot. Keep praying and we know we will get through this.

Saturday, October 2, 2004 3:56 PM CDT

Olivia is resting right now. She has not had any fever's since yesterday about mid afternoon. This is a good sign, she also has been coughing less this afternoon. And the best part of all is finally she had a bowel movement today Yippee!!! Yahoo!!! I am sure someday she will love that I tell everyone these things. Really we were getting quite concerned about that so we are very happy. The only negative is that her white count dropped down to .4 (400). I hope tomorrow it will bounce back and start on the right track. She is still on isolation, they ran some tests on Friday and until we know results from those she will have to be confined to her room. She does ok with this but would prefer to be in the activity room or roaming around the hallways.

Olivia will have a spinal tap and marrow tap on Tuesday. We pray that all will be clear, and no signs of cancer cells. She will then have another one in about a month to agian make sure all is clear. Her chemo treatment is done, as long as nothing changes. Her body can finally have a chance to regroup. Would that be great or what, to be able to move forward from here. She can start to get her life back and be a kid again like any other 5 year old.

I will update as I know more.

Friday, October 1, 2004 8:29 PM CDT

Today has been a long day of sorts. Olivia's white count dropped to .5 (500) we were not expecting that. She has been coughing alot too. She did get some good sleep in but was also having some different tests done today. A couple related to her sinus and throat area. They are checking to see that she does not have any fungi in this area. She also received red blood today. She also has been constipated which can be serious, we are trying different things to get her going in the right direction. I think she needs a break for a change, maybe tomorrow will be more uplifting. We have to hang in there for Olivia. She will get stronger and better in due time. The kids just have so many things going against them up here.

Olivia has been showing everyone here pictures of her puppy "Chocolate". I intend to put a picture of her on here at some point. Just have not had time yet. The puppy went to Fairfield with Grandma so she could go to her Vet appt. So Olivia and Chocolate will each have a shot tomorrow. I need to go, it's that time again for Olivia's shot tonight and her usual meds. I will add more later.

Go Hawks!!! You need to get moving.

Thursday, September 30, 2004 8:29 PM CDT

A quick update. We are still in the hospital and will be for a while. Olivia was still running a fever on Wednesday and then a slight temp Thursday afternoon. They have done several x-rays and have found that she does have pneomonia. They of course have started the antibiotics for this and she seems to be responding. We now just have to wait until she is fever free for 48 hours and her white count comes up to 1000 she is currently at .6 (600) as of this am. We have continued to give her a nightly shot to help promote an increase in the white count.
Yesterday afternoon and then again today Olivia was acting more like herself. We hope she continues to improve on this course. We know it will take time since her immune system is compromised. There are so many things that can go wrong, so with all the tests etc... they try to eliminate all possiblities for other issues. So it seems that the only issue right now are the lungs. They did say she sounded better today after listening to her. We did not have to do the spinal tap and chemo treatment today. The Drs. decided that since the last three spinals have shown nothing in the CNS her body needs a break from the chemo. This will give her body a chance the recoup. We will have a spinal and marrow next week to make sure all is still clear. I have to cut this short. We still have a dressing change, a couple of meds, and her shot. So I best get going so she can get some rest. This of course takes a while. She usually trys to talk us out of these things or at least come up with some pretty good excuses as to why we should wait etc...Our Olivia what a gal!!!!

More later.

Tuesday, September 28, 2004 1:50 PM CDT

Not so good news today. Olivia had a fever this morning so we are back the hospital. She has a cough and is pretty run down. She has been resting since we got here about 10:30 or so. They have given her tylenol and started her on antibiotics. So we hope the combination of rest and the drugs will get her back in the right direction. She also had a chest x-ray already which seems to be fine. When we got home last night she seemed a little out of sorts and not herself. So we were home for a while I guess. Dave and I both went to work this morning. I left at 9:15 and then called him, he has already gone back for the afternoon. I will go tomorrow as long as Olivia is doing ok. My mom will come up here to be with her. Olivia needs your prayers to help her through this rough spot. I know we can get there, we must find the strength to help her and let her heal. I will update soon.

Monday, September 27, 2004 12:09 AM CDT

Here we are on Monday at the hospital. A couple of things, one is Olivia's spinal went fine even though we had a time delay, the other is we just found out we get to go home. We were not expecting to for a couple of days. So who knows but we will certainly go home if they want us to. Olivia's white count dropped to .4 but everything else looks fine. We think because she still has a slight cough and a couple of small mouth soars it is not allowing her number to come up. So we will continue doing her GCSF shot at home until they tell us to quit. We are scheduled this Thursday for her last of 8 spinals. We will celebrate that for sure. We will finally get to be home and Livvy's puppy Chocolate I know will be thrilled about that. My mom is able to help out by staying with Olivia during the day. That way I can go back to work. Not that I want to, I would much rather be with Olivia. I had scheduled for this friend of mine to come see Olivia (he is a Clown "Duder") but we will have to wait on that. He was going to see her at Patti's along with the other kids. He said no problem we can schedule when we are ready. Olivia did have a surprise earlier this am, Clifford the Big Red Dog stopped by her room. She thought that was pretty cool. We have a couple of pictures too.

I better get going but will update when I have time. Keep the prayers coming. We know they work.

Sunday, September 26, 2004 9:45 AM CDT

We are still in the hospital today and probably tomorrow too. Olivia is doing fine but just a couple of issues. One is her white count was still .5 as of yesterday. We won't know until tomorrow if that has gone up or not. The other is she has developed a couple of mouth soars. They don't seem to bother her but we do need to keep an eye on them.

Olivia had a nice surprise on Saturday, her cousin Tori came to see her and brought her birthday friends along. They were so sweet they made Olivia a koala bear at their build a bear party. They dressed the bear in a soccer outfit. Olivia thought it was pretty neat. We met up with all of them outside and had cupcakes. I think Tori and Olivia were happy to see each other. They are like two peas in a pod.

Today we have to wait for the playroom because they waxed the floor. Olivia was ready to go in there at 9 am. I guess it will be ready at 1 pm. In the mean time we have some other things like a bath and meds to take. Olivia is not hooked up to her pole but only 2 times during the day. She is getting antibiotics and that's it. She likes the freedom to ride the bike or just roam around. We encourage all activity to keep her moving.

Tomorrow we have another spinal tap scheduled. We will just have to wait to see what tomorrow will bring. I would love to get to go home. I know Olivia's puppy Chocolate misses her. Chocolate is such a puppy and needs to play and be around us. Dave has been able to go home and let her out and get her some excercise.

Please keep in touch Olivia likes to have me read the updates. God Bless!!

Friday, September 24, 2004 4:37 PM CDT

We are still here at the ole hospital. Olivia is still at .5 on her white count. Being stubborn I guess. So we will be here until we see that come up. Not much going on, Olivia has been in the playroom most of the day and also at the gym. Grandma was hanging out with her this week and just left to go home this afternoon. Olivia will not get to go to Tori's party. We may get to seem her if they come up to the hospital. I need to go Olivia wants me to blow some bubbles with her. More later.

Thursday, September 23, 2004 8:59 PM CDT

Good evening to everyone out there. Olivia is doing better with her cold and has not had a fever since we initially arrived here on Tuesday evening. Nothing has shown up from her cultures either. She did get a transfusion today and hope that will give her the boost she needs. Her white count remains at .5 for the last 2 days, we do have to wait for that to come up before we get discharged. We will have to see what tomorrow looks like. She will more than likely miss her cousin's birthday party. I know they will both be sad. We will work something out. I need to try to get some sleep tonight. They still have construction on the floor below us and they like to start bright and early. We will update more later.

Wednesday, September 22, 2004 9:57 AM CDT

We are admitted to UIHC. Olivia had a bit of a fever Tuesday night, so we will be here until Friday for sure. They have a game plan anytime a fever crops up, a mandatory 72 hr stay. Her white count is low so unfortunetly she caught a bit of a cough. She already had a chest x-ray and all was clear. We will still have our Spinal Tap tomorrow. Everything looks fine but we just need some time for her white counts to come up. It seems real strange to be here, it has been so long. Thank goodness. Olivia is playing in the activity room with Mariah ( a favorite child life gal). We will go to story hour at 10:30. Boy I really miss my bed. We are in one of the older rooms and the accomodations are lacking, poor Dave had to sleep in a chair. Hope to get a cot for tonight.

I hope we get out of here so we can be home Friday night. Also Olivia wants to attend her cousin Tori's birthday party Saturday. I will update later. Say your prayers please.

Tuesday, September 21, 2004 7:51 AM CDT

Olivia had another spinal yesterday, good news her count is still Zero in the CNS (central nervous system). Her other counts are low after this last chemo treatment. We expected this but its always scary because she is suseptible now to everything. In fact she has a cough and her nose is running, all we can do is keep her home and let her body recover. We have to give her the last of her GCSF shots, she will only have four. We gave her the first last night, she did real well, this will help build her white count back up. Grandma is with her this week while I am at work. If we can just make it through without a fever. We go in again Thursday for a spinal, she will then have just 2 left next week. She is happy and full of spunk as usual but does tire easily.

Olivia will hopefully get to attend her cousin's birthday party this Saturday. We will have to see. I better get for now but will update soon.

Friday, September 17, 2004 3:51 PM CDT

Olivia is doing good, she will now have 4 more spinals done. Sept 20, 23, 27, and 30th. We just need to make it through these with a clean slate. Bless her little heart, she is so strong and determined. We just take one spinal at a time and help her through. She pretty much tells them how things will be done. She knows she will have sleepy medicine and what they are doing. The main thing is she knows we are always there for her and it will be ok.

I have put in 3 days of work now, what a change for all of us. The work thing seems to be a little lower on my priority list, but it's not bad.

Olivia had a great birthday, thanks for all of the emails and cards.

Tuesday, September 14, 2004 3:42 PM CDT

Just a quick update.

Olivia's number is now Zero in the CNS (central nervous system). Thank heaven and everyone else. This is where she should be. She is doing fine at home with Grandma. She will be done with the chemo we have been doing at home tomorrow. They wanted us to go ahead and finish this chemo since it was part of her prodical. She will have 5 more spinals done. September 16,20,23, and then the 27th. As long as all is good that will be it. She will have her last bone marrow and spinal on October 28th that is to be absolutely sure that all is clear.

I have returned to work. It reminds me of the first day I took Olivia to her daycare person Patti, feeling nervous and scared. Olivia was only 4 months old then. But I also know she is in good hands at home with her pal Grandma. We will make it through this with prayers and strength. God Bless.

More Later

Sunday, September 12, 2004 7:07 PM CDT

A SPECIAL MESSAGE TO THE BIRTHDAY GIRL, OLIVIA!!!!!!!!

WE ARE SO VERY PROUD OF YOU, YOUR SPIRIT, AND DETERMINATION. YOU TRULY INSPIRE US AND WE JUST WANT THE WORLD TO KNOW HOW SPECIAL YOU ARE!!!!

HAPPY 5TH BIRTHDAY, WE LOVE YOU !!!!!

MOM AND DAD

Sunday, September 12, 2004 6:22 PM CDT

Finally a chance to catch everyone up to date. I tryed to update once before but found out it was lost. So alot has happened since my last entry.

We were to start Olivia's last round of chemo September 2nd and get her last spinal tap. We were in the clinic and had her spinal done and had started her chemo in the clinic. So we thought that we were set to go. Then the bomb dropped. The results came back that afternoon late on Olivia's spinal and the cancer was there in her CNS (central nervous system). We were just sickened by the news, the count at that point was 280 in the CNS. Normal is 0-20. So we had to have an immediate bone marrow extraction done on Friday morning. They wanted to see if the cancer cells were there as well, we also were sent for a CT, an echo gram, and ophthomology. We were so scared about the results from all the tests. Thank God they did not find any other cancer or a mass the marrow was clean. Olivia was such an angel and so strong. Since that time Olivia has had 2 more spinal taps done. They inject chemo directly in the spinal fluid and also extract to see what's going on in the CNS. With the treatments she has received so far her number in the CNS is now at 1. This is good news and we hope this will take care of it. Dr. Radhi said Olivia will have a total of 6 more spinal's starting tomorrow September 13th every Monday and Thursday for 3 weeks. They want to make sure she is clear and no more cells appear. We also have been giving Olivia her last chemo here at home over this weekend. She will be done with this on Wednesday. What a birthday gift Huh??

We have been laying low and taking care of Olivia's needs. She is doing fine but a little tired. We celebrated her 5th birthday today along with Grandma's here at home today. Almost the whole family was here. She played outside and had fun opening her many gifts. She could not decide on a theme so we had Sponge Bob and Nemo. We intend to have a big celebration at some point down the road.

I am starting work on Tuesday but will miss work the days she has her spinal's done. Olivia has been a little bit sick after these spinal treatments, it's a combination of 3 different chemo drugs and sometimes will make the kids sick. She recovers ok and then it's back to normal. My Mom is going to be here and help us out while Olivia goes through these next treatments. Insurance does not pay for Home Health Care services and we don't want to send Olivia to daycare yet. Her counts will drop again after this last chemo. So we will just do what we need to get her through this period. We want to make sure she is completely ok. After these last 6 spinal's Olivia will have a final bone marrow and spinal done October 28th. At that point it will 8 months since her diagnosis. We are praying this will be it for her treatments and all will be good. We just have a little delay for now.

Keep Olivia in your prayers. Don't miss a chance to tell your loved ones how much you care about them. Each moment is a gift to be treasured. God Bless.

I will update when I have a chance.

Saturday, August 28, 2004 2:56 PM CDT

Another quick update. My bad, I was not sure on the last update if the first one went through. I guess so. The computer in the activity room at UIHC is slow.

We have not yet started Olivia's last round. We hope that her counts will be there for us to start this Thursday, September 2nd. We won't know until Wednesday for sure. If we do go ahead Olivia will have a spinal tap at 12:30 on Thursday and then have her chemo in the clinic for 3 hrs. The rest we will do here at home. We were slated to attend the football game on Sept 4th but we will have to miss it now. The Dance Marathon group provide free tickets, a chance to meet the players, and see the cheerleaders. There will be next year I guess. Maybe it will rain wouldn't that be unusual. We are focused on Olivia getting through this as healthy as possible. She has come so far and done so well. We certainly don't want to jeopardize anything now. I have to say bye for now.

I will update when I have a chance. Take care and God Bless to all.

Saturday, August 28, 2004 2:56 PM CDT

Wednesday, August 25, 2004 11:10 AM CDT

Wow, an update at last. I just typed a whole page and somehow it is now lost. So I will try again. I apologize for the tardy update. I have not had access to a computer and had issues with my home computer. Oh well.

We are here for Olivia's lab work, and thought we would be here tomorrow for her last chemo treatment. Olivia's neutrophil number is not at 1000 yet. It must be there for them to start the chemo. We should have started her last treatment August 16th but are waiting for the magic number. The rest of her numbers look fine. This is a minor delay considering it has now been 6 months. We will do whatever it takes to keep her healthy. After this last round Olivia's numbers will drop again which makes her more suseptible for infection etc... Therefore, she will not start going back to daycare until middle of September or so. It just depends how quickly her body recovers. We also have postponed her celebration since we have no set schedule to plan around. We will still celebrate Olivia's 5th birthday on September 12th. Just a family gathering of some sort.

Olivia has a new friend named Chocolate. A lady over by Pella gave the puppy to her. We were taken back by her kindness. Her puppy is a pomeranian/chihuahua mix. The little girl (Chocolate) is under 2 pounds and usually under your feet too. We are trying to do some training (if you want to call it that) while I am still home. I will return to work on September 13th, I will have some adjusting to do I'm sure.

I must go but will update soon.

Thursday, August 5, 2004 8:49 PM CDT

I thought I should update while we have a chance. Olivia is doing well. We went in for labs on Monday and her counts are fine. We don't have to go back now until next Monday for her next labs. Sometimes I forget that she had such a rotten disease because she pretty much acts like the old Olivia. The only difference is alot less hair. Her hair continues to grow in slowly. We pretty much take it easy and keep a close eye on Olivia, I don't think I would make the best stay at home Mom. I find myself eating when I am stressed or bored. Good thing (I guess) that I will return to work on September 13th the day after Olivia's 5th birthday. I better hold down the partying. Ha Ha!! We do plan on having a pretty special birthday for her. We are so blessed to have come this far and have our little girl be able to celebrate this and many more to come. God has been answering our prayers.
We will return for Olivia's last chemo treatment on August 16th, she will have a spinal tap and an EKG. Our scheduled stay is 4 days. She may have one more spinal after this one, they will check her bone marrow just to assure all is fine. After that she will go in for weekly labs, they keep a close eye on her counts for how long I don't know. She will also have her port (Hickman) in for a while. We will have to see when they intend to remove it. Olivia will also have to have her heart (PDA) situation fixed. They say we don't need to be overly concerned right now. Easy for them to say. We will take one step at a time and worry about that when the time comes. I guess I should close for now, It may be a while before I update. Who knows, we appreciate your prayers, thoughts, and emails. Olivia likes to read the website updates. God Bless and take care!!

Thursday, August 5, 2004 8:49 PM CDT

Thursday, July 22, 2004 10:58 AM CDT

News Flash!!!! Olivia will be on the radio next Thursday the 28th of July around 9-9:15 am on KHAK 98.1 on the FM dial. They want families to interview for the Childrens Miracle Network and asked if we would be interested. We will already be here for labs so I thought what the heck.
If we can share our story maybe it could help someone else in early detection or in whatever way it might be. Hopefully Olivia will be her normal chatty self. It should be fun and they have other things going on too. So if you need comic relief on my part anyway try to tune in. I have no idea what they will ask us. We will see.

Thursday, July 22, 2004 8:49 AM CDT

Well we made through, yes indeed we get out of here around noon today. Olivia and I were up at 4am so they could check her urine output and then they did her chemo around 6am, once again they check the urine and then she had to go again at 8am. They are checking to make sure the urine is not too concentrated because it can cause problems if it is. The chemo she has received the last two times can be hard on the kidney's. It's good they know all this stuff. Olivia has done real well. She is currently watching Sesame Street and eating chocolate pudding that Grandma brought her. She is waiting for activity to begin. Dr. Tonnous just arrived and she said Oh No!! She likes to tease him, as he does Olivia. All of the Docs are pretty nice, they all have a different bedside manner. Some better than others of course.

Dave will come pick us up around noon and then it's back home to regroup. We will then come back in next Mon & Thurs so they can check her counts. Same thing the next week and then if all is well we won't be back until August 16th for her final treatment. Yahoo!! Yahoo!!! We can't wait! It has now been 5 months since Olivia was diagnosed and let me tell you we feel very blessed to have come this far with minimal problems. We will update later. God Bless.

Wednesday, July 21, 2004 11:15 AM CDT

I am sitting in Olivia's hospital room. She is off to the library with the child life girl's. She keeps everyone on their toes around here. Yesterday we were all over the hallways as she was riding a bike they have here. It was rather funny, here I am pulling her IV pole behind her trying to keep up with her. She did not always tell me when she wanted to stop so we almost collided a few times. She made a game out of the big dots on the carpet. She would ride in a figure 8 around them and then say we could only ride over certain colors. What an imagination she has.We have already had her chemo early this am and then we have one more early in the am. This is a good thing then we can get out of here earlier. Olivia's hair had thinned out these last 3 weeks but now seems to be growing back in. She has never been completely bald, who knows how her hair will come back. Straight, curly, lighter, darker, a different texture. I guess everyone is different when it comes to that. Who really cares, I do know we will keep it shorter than we used to. We have also decided to wait for Olivia to start school. She needs some time to be a kid again and have some control in her life. She will only be 5 this September. No big rush on our part. She will do fine.

Hope you are all having a good summer, even with the extreme weather. I really don't feel like I am missing out too much. I will update later.

Monday, July 19, 2004 10:00 AM CDT

Hello to all!!! We are here at the hospital now until Thursday. We are real pleased with Olivia's number's report this morning. They all look good, we are scheduled for a spinal tap at 2pm today. That will be a long wait for Olivia since she can't eat or drink until we are done. They will go ahead and start some fluids this am. That should help her feel more full. We are back in the quiet bone marrow unit (behind the double glass doors). I think we are spoiled now and are used to the newer rooms. We are only one of two families back here. That is a good thing.

My weekend was packed with one thing after another. We had a very nice time in Fairfield. Olivia wore all of us out. My class reunion was fun and the people that were there seemed to all mesh well and enjoy themselves. I got to see many reltives on my Mom's side that we had not seen in a while. My grandmother's funeral service was very nice. She looked very peaceful. The weather cooperated for a change.

I will update this soon. It seems strange to be here instead of at home. We were at home for almost 4 weeks. The most since February. I had to remind Olivia that we can't yell and scream like we can at home.

Monday, July 12, 2004 9:47 PM CDT

Wow, we have set a record now. We have been home for 3 weeks this Thursday. Yeah!!!! We have a lot going on this week. My grandmother passed away this last Saturday and her funeral will be this upcoming Saturday. God bless her, she was 96 as of June 11th. Also my class reunion is that night. We will be going back into the hospital on Monday July 19th for 4 days of chemo treatment. Olivia will then just have 1 treatment left after this one. Her last scheduled treatment is August 16th again for a 4 day stay. God willing that will be it for our little courageous Princess. It is almost harder now knowing the end of the road is near. We just can't get there quick enough. Thank God for taking care of our "Olivia". We are so proud of her and will be planning a big celebration at some point in September. Keep the 12th open. Pencil that in, and we will update more soon.

Sunday, July 4, 2004 2:41 PM CDT

Happy 4th to everyone!!! We are in Davenport with my brother and sister-in-law. We came over on Saturday. Olivia is having so much fun. We had Dairy Queen for lunch (Yum) and then Olivia wanted to stick her fingers into the Mississippi River. We barely missed a huge downpour but did not get a bit wet as we watched the rain from inside the truck. We of course had our sanitizing wipes with us so Olivia stayed clean. Not that the Ole Miss is dirty at all. We also did get to see fireworks over the water. Olivia has been doing real well and seems to feel fine. We just watch her every move. Today we played miniture golf, and had a bite of brunch. Olivia is the fastest golfer this side of the Mississippi. She is working on the patience factor, plus they were quite busy. Olivia took a spill outside and skinned her knee. Just one more area to watch for infection. Those things are going to happen.

We are trying to just take one day at a time as Olivia continues her treatment. We have 2 short cycles left each last 28 days. The next cycle begins July 19th and last just 4 days. I guess we are looking at mid September for this to be behind us. God willing no set backs or issues get in the way. We will be on our way to Adventureland next Saturday for some fun. I will keep you all posted.

Thursday, July 1, 2004 9:55 AM CDT

We are here at the clinic today to get blood work and a short visit. We are waiting to receive red blood for Olivia, her count is a little low. This should get her through for a few days. Her counts should level off since we are done with the chemo for now. We may go to the Quad Cities on Saturday and spend the night with my brother Ron and his wife Linda. We will have to see how Olivia is getting along. Hope the weather holds out for the 4th. We will try to see Fireworks here in Iowa City or Coralville. Next weekend we go to Adventureland on Saturday.

Our next scheduled stay in the Hospital will be July 19th for a 4 day cycle of chemo. Then we wait until that 28 day cycle is over. I am pretty sure she will have 1 more final treatment after that, I am not sure how many days that one will be. The person I need to verify this with is on vacation. So timing wise Olivia won't quite be done before school will start. I hope she can start on the first day with the other children. We will close for now. Have a safe 4th of July.

Thursday, June 24, 2004 8:01 AM CDT

We are up and ready to go today. Olivia is having a sucker and watching Dragontails. We are passing the time away until she gets her chemo. It should be real soon. Her urine is diluted enough, so we are just waiting for the nurse to get it started. The sooner we start the sooner we get out of here. They have to check her urine twice after the chemo is done, to make sure there is no blood in the urine. This particular chemo can cause that to happen. I am so glad that Olivia seems to be doing so well. If she continues we will be going to Davenport tomorrow to see the air show. Today we are going to the Library they are going to have some dogs for the kids to see. Olivia is pretty exicted about that. So we will be home now until Mid July when we return for her next cycle of the same chemo. Only four days in duration and the intensity is so much less. So far no side effects from this, and hope next time will be the same. Olivia has never lost all of her hair, but did loose eyebrows and lashes with the intensification cycle. Her brows and lashes have already grown back and her hair is not quite as thin. Most of the kids are completely bald, I think because she had so darn much hair to begin with that she just never lost all of it. Neither one of us miss fighting over combing Olivia's hair. We certainly wasted alot of time on that. Amazing how those little things really just don't matter.

Don't be afraid to call, we are usually hanging out doing something. I will update more later. Keep Olivia in your prayers and God will continue to help her heal. Thanks to all. Keep in touch.

Wednesday, June 23, 2004 6:20 PM CDT

Today has been another busy today for Olivia. I must admit her social life is way better than mine. She spent her day at the Library this morning and then playing games with Shannon a Child Life Worker. Olivia just eats up the attention. This afternoon she also was playing most of the time in the main activity play area. She is currently having a nap. She is getting ready for company tonight, Olivia's aunt Linda will be arriving around 7pm. She is so nice to spoil us with dinner and entertain the little princess. Tomorrow in the morning the kids will again go to the Library but there will be puppies that they can see and play with. They just think of everything around here. Home fun will never be the same.

We will get to go home tomorrow at some point. We just have to wait until her chemo is done. Then they check her urine output twice to make sure all is well. The key is to get Olivia drinking clear fluids. She is not a big drinker, so we follow her around with glass in hand. We don't really care what time it is. Just knowing that she is doing so well and feeling good is the main thing.

On Friday we are going to the Quad Cities to join my brother Ron. The Make a Wish Foundation has a VIP event for the kids at the air show. They provide lunch from Olive Garden and the kids get to tour the planes and meet the pilots. So if all is well and Olivia feels good we should be able to go. I think the weather sounds good too.
We also have a chance to go to Adventureland on July 10th. That is provided through the Dance Marathon. Olivia is really looking forward to that, as she absolutely loves the log ride. We hope for good weather.

We will update you all soon. God Bless!!!

Tuesday, June 22, 2004 5:41 PM CDT

Tuesday, June 22, 2004 5:10 PM CDT

Olivia has had a good day. She has spent her time playing in the activity room. They had music this morning and then made pasta salad this afternoon. She definitely has more of a social life than I do. She also had some company Grandma and Grandpa Ogden came up to see her. She has such a great time with them. Of course the fact that she is the center of attention and totally spoiled has nothing to do with it. They have a little basketball hoop in the hallway so she showed us all how to play.Currenly Olivia is having a nap. She has to get ready for tonights activity.

We know for sure that the results of her spinal tap were clean and good. What a relief to hear that. I just could not even imagine coming this far and having a set back now. We pray we don't have to worry about that. I have never been one to wish away time but right now I wish it were Fall and this would all be behind us. We have truly been blessed with Olivia's progress and her response to treatments. Sometimes that is not the case, each family has a different story and situation. It seems no two are alike. It is amazing how many different types of cancer there are and the different prodicals the Doctors have to treat them. Thank God for that.

Talk to everyone soon.

Monday, June 21, 2004 1:07 PM CDT

We are in the hospital now just until Thursday. Olivia had a spinal tap this morning and then she will receive chemo for the next 4 days. The intensity and duration will be much less than she has had before. The only difference when we leave this time is she will be on an oral chemo drug for the next 8 weeks or so. This will be only 75ml once a day. We won't know the results of her spinal until later today or tomorrow. We pray all will be clean and good. According to her counts she has no blasts (bad cells) and hasn't for a couple months now. She is considered to be in remission because the cancer cells are gone, however they don't considered someone cured until the very end of treatment and then after 5 years of being cancer free. We just take each step as it comes. We are so proud of our little angel.

A special thank you to Steve Baker!!! He ran in the Relay for Life here in Coralville in honor of Olivia. We could not attend due