Karen's update... I did not know September was Childhood Cancer Awareness month.

Something to think about....
Posted 1 day ago
Most of the statements below are from other Carepages. From others who have or are dealing with things that I am or have. Just want everyone to be aware....

September is Childhood Cancer Awareness Month. Did you know that? I didn't....until it became our life. Why? Why is this not known? GOLD, the color of childhood cancer awareness, should be just as prevalent as pink. You see pink everywhere in October from restaurants to yogurt lids to football players - pink. Is it hard to think of a child laying in a hospital bed suffering from cancer? Of course it is. It's even harder to think that 7 of those children will die today...and tomorrow...and the next day. Imagine, if you will, that it's your child laying there. It's a helpless feeling...it's a hopeless feeling...it's a feeling I never thought I would feel or know about. No one does but it's happening every.single.day. Please wear that gold this September. Tell someone about a child you've witnessed - whether it be Nikki or another warrior/angel - put that GOLD in someone's ear. It may be hard but it's reality and this needs to stop. Too many children are dying from this horrific disease. Too **** many and it needs to stop. We need to be loud and strong and bring these amazing, beautiful kids the attention they deserve. I thank you from the bottom of my heart. I know it's not easy, I get that, but you could be the link in finding the cure so that no other parents ever have to hear, "I'm sorry but your child has cancer." I can tell you that, from experience, it's not something you ever want to hear.


We are giving up something for the month of September. We are fasting by giving up something for the month in honor of what our pediatric cancer kids give up in their lives. They give up their childhood, their hair, their lives.... I want to challenge you...
WHAT WILL YOU GIVE UP FOR CHILDHOOD CANCER AWARENESS

Today is Sept. 1st so start today. I am giving up sweet tea which I absolutely love!!!! I will also get Gold ribbons when I get home from the beach. Thanks for the support. Hugs and kisses to you all....Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Karen posted last night.

Don't forget your GOLD
Posted 22 hours ago
http://www.youtube.com/watch?v...v9rM&feature=related

So, hurricane Earl shortened our vacation. Boooooo! I haven't been happy since. The reality of everything has hit and I am struggling. That we have begun the second year without Nikki and it stinks more than the first year. More questions enter my head about the last month in the hospital....just what if? Very hard for me to let go...Hated seeing the school buses go by and no Nikki to get on...just not fair in any way you look at it. I am struggling...

Got my gold ribbon and balloons on my mailbox. Would love to see others do the same so people ask, and we can tell them...it is for our children. Bob and I went on a Poker Run yesterday and I tied a gold ribbon to the back of the bike.

Still promise I will get new pics soon. Hugs to all! Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

to you Karen and Bob.

It is amazing how much they do for childrens cancer...but when you see the numbers it really makes you think.too much is never enough if you ask me. My daughter went through Leukemia when she was only 3..it takes their childhood from them and the whole family to enjoy. We are justy happy she is still here today.We feel for you guys everyday,everytime we are at a cancer related function and at the race track with Nikki riding on her Junior.

Missed the update while I was at Bracket Finals. Awesome news that the Thinking of Nikki Foundation is now set up.

Finally......
Posted Sep 24, 2010 5:12pm
Just a few things as my heart continues to break for Nikki and others. Yesterday was two years that little Alyssa went to heaven and it is starting to get closer to a year that Mark left us. I hate that it just doesn't seem to end.

As you can see I finally added a few pictures so be sure to check them out. Remember that there are many more pics on PRP's website of the memorial race.

Please continue to show your GOLD and support our kids this month. One way is to go out to eat....Dine at Chili's on September 27 and all profits go to St. Jude Children's Research Hospital®. I know I am getting thirsty for sweet tea but am very happy that I gave it up this month. It truely is such a small thing compared to what kids give up.....

Last but certainly not least, I am very proud to share that I received the papers from the IRS and the Thinking of Nikki Foundation is official. The bank account has already had lots of action and that is great. I have already gave a few Memory Doodles and Remembears to families that have lost a child and will continue to do this. I have also been working with Childrens Hosp. to get a few projects started. Things that I as a parent could have used on 9B, and things to help kids like Nikki who are in for transplants pass the long days. I will share as things get approved. My hardest task right now is to find a bear that looks like Nikki's Bear. Just need to find the right one, so if anyone sees one like the one she took to heaven please let me know. Also, as the holidays approach (which I again am not looking forward to) please don't forget the children on earth and in heaven. Do something to honor or remember them. Donate money to a good cause....hey, maybe to the Thinking of Nikki Foundation. Believe me, I know what kids and families need as they fight their cancer battle. Thanks in advance for your support. Checks can be made out to the THINKING OF NIKKI FOUNDATION and mailed to:
303 Sawmill Road, Greensburg PA 15601

I miss you so much Nikki!!!!!!

Karen

****THINKING OF NIKKI...ALWAYS AND FOREVER!!!****

The foundation is such a wonderful idea!

Always n forever, thinking of Nikki

The foundation is awesome, and I have no doubt of the good that Karen, Ashley, and Bob can do through it.

Karen updated this morning:

14 months.......
Posted 14 minutes ago
I really don't have much to say today. My heart remains heavy and tears come so easily. I just want to send out a HUGE thank you to friends and family that have helped us get this far. Thank you to the ones who let me talk about my Nikki and don't change the subject. Thank you to the ones out there that truely ask how I am doing. Thank you to the ones that still send me cards and pictures...just to let me know you care. The above reasons are why I keep trying my best...so THANK YOU!

I want to invite you all to a candle open house that a friend Dana has set up and is so graciously donating some of the proceeds to the THINKING OF NIKKI FOUNDATION. I will try to get the info on here but if you have questions please email them to me at Rkndeniker@comcast.net
Thank you for the support. I will be getting more updates about the foundation to you soon.

Dana created a code for anyone that is unable to come, but would like to order on-line. Go to:

www.gabbricha.scent-team.com

click shop on-line, and use code TONF2010 when they check-out I will be able to tell they are a friend of your Foundation. The code is good until October 31, 2010.

I will also try to post the flyer. Open house is Oct. 24th from 1-3p.

One final thing is that I am now on FaceBook under, Thinking of Nikki Foundation, so visit me there. When I get the strength I will close this Carepage and then just continue on FaceBook, but not yet...just can't seem to do it yet.

Hugs to all........Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Still time to order candles this week and have a portion go to the Thinking of Nikki Foundation. Candles are good gifts for Christmas!

Still not to late to order...
Posted 41 minutes ago
A big THANK YOU to Dana for a nice afternoon at her open house
party yesterday. Thank you to the ones that did come. If you
forgot...it is still not to late to order on-line. Order until the
31st and proceeds will go to the THINKING OF NIKKI FOUNDATION.
Details and websit on last update. Thank you all in advance for
your support. My favorite candle is called,"Angel Wings", order
yours today. I love and miss you Nikki!!!!! Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Karen's update from a couple of days ago. I continue to be amazed at their strength.

Halloween again...
Posted 2 days ago
Happy Halloween my Nikki...I really miss you and wish I knew what you are being this year. I can only imagine how cute you are. Your little sister has changed her mind three times. First, we bought a rock star outfit. Second, Sabrina gave her a Hannah Montana outfit which is what she wore at the racetrack and also to her preschool party. Third, she wanted a red tail and horns because Miss Amal wore that to preschool. So, I have no idea what she will actually be tonight. We will go with your cousins, Ben and Eli. I will miss you during trick or treat just like I always do.
I have to tell you about carving the pumpkins. Ashley and I carved them on the porch. I got everything ready and cut the tops open. I told Ashley to go ahead and dig the stuff out...she looked at me very seriously and said...THATS YUCKY! She tried alittle but could not do it. I just had to laugh as I remember you. You couldnt get your arms in the pumpkin far enough and so enjoyed the slimmy pumpkin guts. Ashley did the best she could in drawing the faces and I finished them. Just not the same without you. Nothing is and the time just keeps slipping away. I had a very rough night last night. Could not sleep so I watched home videos of you. So thankful that you always let me take your picture and video tape you. Again, Ashley is opposite and wants no parts of it. Well, I better go and get your daddy some lunch. You know how he likes to eat. Hugs and kisses to you my sweet Nikki. I love and miss you every second of every day.
Your Mommy <3

Dont forget everyone....today is the last day to order your candles or make-up. Thank you!!!

Also, I want to thank you all for your supportive words. I have recalled my contact at Childrens Hospital and we are again working on the microwave project. Nikki didnt give up and I wont either. I also talked to Sharon, who was our social worker and is an amazing women. It was nice to talk with her and she will help me to get gift cards to the families who need them. I will get some to her next week. For gas and groceries. I will keep you updated. Hugs to all! Karen

***THINKING OF NIKKI..ALWAYS AND FOREVER!!!***

Karen posted another update this morning. I can only imagine how scary it is to have Ashley run a fever. I'm so glad the Thinking of Nikki Foundation has gotten such large support. I have no doubt Karen will help families at the hospital.

A HUGE THANK YOU!
Posted 52 minutes ago
I just wanted to say THANK YOU all again for all the foundation support.

I calculated the money from selling 50/50 tickets this year at PRP and it came to almost $7000.00. This is just AWESOME!!! Thank you so much Mike for giving us the chance to do this.

Dana came yesterday with my candles. They smell so good. She also brought me a check for $325.00. AWESOME!!! Plus I received a donation of $20.00 in the mail, so THANK YOU!

I will be going to the hospital this weekend for a memorial service that they are having to remember Nikki and other children that we lost from July to December in 2009. It is a shame that they have to do it in 6 month increments...meaning that we are losing too many kids. I decided to do this trip to the hospital alone. Bob has decided to never return to the hospital and I respect that. I just spent so much time there that I feel the need to return even though it will be hard. It is the last place I saw my Nikki alive. Plus, some of the staff have become like family to me. I will meet my favorite nurse, Amamda, there. So, with this trip I will be taking gift cards (for fuel and groceries) to Sharon, the social worker. She will give them to the inpatient families who need them. I will also take the new Wii system I bought for the BMT playroom. It was a very hard purchase. Nikki's system is still packed with her hospital stuff. I bought the system and Nikki's favorite games which included Mario Cart, Carnival Games and SpongeBob. I know the kids will enjoy it as much as Nikki did. All of this is so bitter sweet....

Been at home with Ashley the last 2 days. She is sick with fevers. Boy do I hate fevers....

Hugs to you all! Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Ashley is still fighting the fevers. I can't even imagine the place that takes Karen and Bob to emotionally. Prayers for Ashley's fever to break, and for Karen and Bob's mental health.

Will this emotional rollercoaster ever end?
Posted 11 hours ago
Can't sleep tonight. Way to much on my mind. Other than my daily missing Nikki, I have been a mess since last week. It all started with Ashley getting high fevers. Had her at the doctors on the 3rd and she has been on Omnicef since. The fevers went away but after the weekend came right back. So I have had her back to the doctors twice this week and still no answers. I am sure it is just a virus but being in my shoes....it is just not that easy. To add to this weeks fevers, I took about 5 steps backwards emotionally after going to Nikki's memorial service at CHP. No regrets on going though, it was very nice. Just very hard and brought back questions. The only happy thing about going to the hospital was to get the Wii system to Mike in Childlife and the Gift Cards to Sharon. Mission accomplished. So, back to the fevers. What do I do now. If they dont go away I have to take her to Childrens....ugh! It was 103.3 this evening. I just dont want to make Ashley go through anything more. She has been a real trooper so far but I dont know if I can do more. Doing more didnt help my Nikki. Every test reminds me of Nikki..we were such a good team...........I just dont want to do that type of stuff with Ashley. I will say that God made her different and she has been more brave than me. Maybe because she saw alot with Nikki. I dont know but when we went for bloodwork, she pulled her sleeve up and put her arm out. Really? So opposite of Nikki. Still dont want her to have to have more. So, what is causing the fevers...strept test neg, mono test neg, chest xray clear, and urine neg. The antibiotic should have taken care of these issues anyways. So now what?? Maybe I dont want to know. It has to be a stubborn virus. I just dont know what to say. I dont want to think anymore yet my mind wont stop. Stop questioning why Nikki isnt here, missing her so badly that it hurts, worrying what is wrong with Ashley and feeling like I am falling apart. I just want it to stop. I hate being the mom that the nurses and doctors look at differently because my Nikki is gone. I hate that the holidays are coming. I just hate everything tonight so please forgive me. Hugs to all and also a belated Happy Birthday to Sawyer in Heaven. Karen

Still trying to find why Ashley has the fever, they had to go to the hospital. Tough read, had to get a tissue... you'll see why.

Another trip to CHP.
Posted 1 day ago
Friday morning Bob and I decided that waiting until saturday morning for the next MD appointment wasnt going to get us anywhere since Ashley's fevers were still very high. So I made some calls and Ashley and I were off to "Nikki's hospital". I was nervous but glad Dr Jake would be there to help us through. He has always been there for us. I talked with him before I even left the house so he gave the ER report and we didnt have to wait at all. It was extremely nice of Dr Jake to come see us in the ER. Ashley said, "You are Nikki's doctor". Hard to see the high-fives between them just like he and Nikki used to do. The hardest part was when Ashley asked me on the way down if "she has what Nikki has". Ouch!!!...that hurt. We spent about 5 hours there and still came home with no answers. I finally learned that if you dont want admitted to pack a bag. One thing I never did with Nikki.... They did give her some IV fluids because she was starting to get dehydrated. Her CBC still looked good. They all say it looks like mono yet that test negative. There are still 2 blood tests out; one is for Cat Scratch Fever and the second is another virus similar to mono but I cant remember the name. So at this point we keep doing what we are doing. I am frustrated. I know a virus has to run its course but it seems at times to be getting worse everyday instead of better. You can tell her throat hurts by how she talks. She even lost 2 pounds. As I always say...one day at a time. Another thing that is hard is that when Nikki got sick, she started to call me mama instead of mommy. Wouldnt you know that this week, Ashley has started to do the same thing. Also acts like Nikki when she doesnt feel well. Memories.....Missing my Nik alot!!! I will keep following up with the docs and keep you posted as well. Thanks for listening. Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Karen just updated a few minutes ago.

Things the same here.
Posted 8 minutes ago
Ashley and I are just hanging out and doing the best we can. I am hoping every second that she is turning the corner on this virus, but don't see the evidence to that yet. She is sleeping now. I put another call into her doc since her fever went up to 104.5 last evening. She is now getting frustrated every time I check her temp., ask her a question, or ask to look in her mouth...which by the way looks absolutely horrible. Will keep you all posted. Thank you so much for your well wishes and concern. Karen

P.S. FYI..The Ebstein Barr virus is mono. That was negative. I still can't remember the other one that they tested her for that we haven't heard about yet.

***THINKING OF MY NIKKI....MORE AND MORE EVERY DAY!!!!***

Have there been any changes I have been watching and am worried.

Finally feeling better! Posted 1 day ago

I am happy to say that Ashley is starting to feel better. I would say that she hit bottom sunday evening and since then has slowly improved. I never did hear from the docs office, but as long as she is getting better I really don't care. She has been eatting and drinking....not 100% yet but much improved. Today is the first day that we didn't have to keep hitting her with motrin to keep the fevers away. I don't know if they are completely gone but again, much improved. Her throat is still sore and looks bad but her voice is better, and the fact that she is drinking her juice again tells me that it is getting better. So, hooray!!!
Thank you all for your concern and well wishes! Karen
Missing my Nikki so much..............Always and Forever.........

Ashley is better.
Posted 37 minutes ago
I will keep this short, but just wanted everyone to know that Ashley is going great! This is the second day of no fevers and she is ready to go again...play and be her crazy self. Her doctors office called back and all tests negative. I am happy yet still have a heavy heart. Why didn't Nikki's fevers just go away? Why can't my Nikki be here as I try again to prepare for the holidays. Believe me, I am so thankful for Ashley but can't help missing my Nikki every second of every day. Tears...................Don't forget to hug those kids. Karen

ALWAYS AND FOREVER......MISSING MY NIKKI.........

Annual Candle Lighting
Posted 19 hours ago
You are invited to participate in The Compassionate Friends Worldwide Candle Lighting held officially for one hour at 7 p.m. local time, the second Sunday in December, this year December 12. This is our opportunity to remember together our children--and all children--who have died. Services are planned around the world and throughout the day. For a list of services open to the public (received through our website), visit http://...tinyurl.com/WCL2010Services. Stop back often as services are being added on a daily basis as information is submitted. For more information about the event in general, visit http://tinyurl.com/tcfwcl. If your area did not have a Worldwide Candle Lighting event last year, why not sponsor one this year (or next year) in remembrance of your child, sibling, or grandchild? You do not have to have a formal group to hold a Worldwide Candle Lighting Service open to the public. If you can't attend a service, you are invited to light a candle in your home or wherever you may be with friends and family.

On December 12, stop at www.compassionatefriends.org and place a memorial message in remembrance of a child in our Remembrance Book, which will only be open that day to place a post, but will be open year round for others to read!

P.S. Jim, Ashley just had her preschool pics done and are very cute. She looks so grown up and I promise to post when I get them. Thanks! Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Bob
a good friends child had leukemia many years ago and we all thought that he would not do well , He was a great athlete all through school and graduated college a few years ago and is just fine still, so hang in there and she will be OK,
the state of medicine is really outstanding

Feeling overwhelmed.
Posted 33 minutes ago
The holidays are here and I am doing my best. Ashley is easy to buy for. She wants EVERYTHING! It is just hard to shop because I want to shop for Nikki too. I hate that I don't even know what she would want this year. I only know what she liked when she was here. I go to her size and pick up clothes that should fit her if she was here at 8 years old. I am sure I look crazy as I do this, fighting back the tears, and then just putting everything back. Everything Ashley is doing now reminds me of Nikki...both good and bad. Ashley is fighting fevers again. I know it has to be her tonsils. Just take one look at her throat. We will be getting an ENT consult but in the meantime riding out another fever. We are on day 5 already of this one. I am sure it is no big deal to most, but to me it is just more than I can emotionally take. It was bad enough that I felt trapped at CHP, gave Nikki the best and still couldn't bring her home. Now I feel trapped with Ashley's fevers and hate that she is missing things like Nikki did because she is sick. Too many fevers in November to have them again. I also know that the word "trapped" sounds horrible but I don't know how else to put it. I guess I am trapped with my emotions that I can't do what I need to do or want to do. Stuck in a dark place emotionally. As much as I say that, I would never change the time I had with Nikki or the special cuddle time with Ashley when she feels bad and wants me to read her a story. It is just so hard. I want Ashley to go back to preschool so she can practice for the Christmas program. Even though I know I will cry as I remember Nikki singing the same songs. What am I to do? I miss Nikki so badly and my heart continues to break. My heart will always break until I see my Nikki again......Ashley's fevers just are too much. Too much for me.

I need to say a BIG thank you to Lindsay Clark for donating childrens books to Nikki's pediatricians office in her memory.

Also, that I am still working on a few things with CHP for the Foundation. Just remember all the families who are missing a child during the holidays. Hugs to all! Karen

***THINKING OF NIKKI...ALWAYS AND FOREVER!!!***

Glad to hear Ashley is feeling better.
The Ru****s are doing the bake sale in Carson's name, to raise money for a woman in their church going through chemo

Cookies for Carson....
Posted December 8
Ashley is doing well. Back to preschool and practicing for the Christmas Program. We do have an ENT appointment on the 16th but I am hoping the tonsils never get inflammed again. I guess we will see.

Today I am thinking about Carlie Ru**** and her husband. They are trying to manage through this first Christmas without their son Carson.
Carson LOVED to bake cookies so she is having a Bake Sale. So, if anyone wants to donate or buy please do. Money will go to a good cause.
Thanks in advance and see you there. Karen

Carson's Christmas Cookie & Bake Sale
Location: Community United Methodist Church
3487 Rt 130
Irwin, PA 15642
Time: 4:30PM to 7:00PM, Wednesday, December 15th

THINKING OF NIKKI AND CARSON...ALWAYS AND FOREVER!!!

p.s. The last 2 preschool pics of Ash and Nik are when they are both 3 years old. Similar yet so different.