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Thursday, May 11, 2017 6:36 PM CDT

Hard to believe that it's been 17 years April 11 that Ashley was diagnosed with leukemia. She would be 21 this September. I will always see her as my 11 year old little girl with a belly laugh that would get even the grumpiest person rolling on the floor! We sure do miss her. Dec 8 it will be 10 years since she passed away. 10 years. Time does not heal. There really isn't any healing there's just trying to survive. I have finally gotten to a place that when I think of her I think of her laughing instead of suffering, it's taken me 9 years to get there and it feels pretty good. Mother's Day is in a few days which just like all the others it's a difficult day. But thinking of all the crazy things she used to do always makes all of us laugh. I could go on and on about how loosing a child effects you, effects your family but I think I'll just end it here saying hold your kids tight, laugh at the crazy stuff and hug them when they drive you nuts they grow up way too fast to sweat the small stuff.

Ryan, he is 15 years old!!! 10 years cancer free! Only annual doctor appointments for him:)

Happy Mothers Day to all the moms out there.

Robin

Wednesday, December 9, 2015 7:24 PM CST

I guess it's been a whole year since I've been here. I tried login in yesterday to post a quick update but couldn't sign in. It's now been 8 years since Ashley passed away 8 long years. We are all doing well Ryan is in 8th grade , 9 years cancer free. Jennifer and Kelsey are doing well also working hard. Mark and I had our 24 year wedding anniversary in Sept, we were married on the 14th. Ashley's birthday is the 13th. We are both doing good, holidays are always hard we miss Ashley so very much. I hope all of you have a very Merry Christmas.
Love you Ashley❤️❤️❤️

Monday, December 8, 2014 4:38 PM CST

7 years ago today Ashley earned her angel wings.

We miss her so very much. She loved Christmas loved getting gifts for everyone. It's just not the same without her. There is a huge hole in all our hearts. I wonder what she'd ask for this year. She would have been 18....

We love you Ashley Nichole forever and always....

Saturday, September 13, 2014 8:58 PM CDT

Happy 18th Birthday Ashley!!!
Can't believe you would be 18 today! I wonder what kind of stuff you would have asked for? Miss you so very much. Hope you saw the balloons we sent up to you:)

Sure do miss your laugh...love you kiddo

Monday, November 4, 2013 5:19 PM CST

Vikki, thank you for signing Ashley guest book and for remembering how much she loved Halloween. Halloween was her very favorite holiday even more so than Christmas:) Thank you for remembering her

Love ya Ash<3

Friday, September 13, 2013 10:36 PM CDT

Happy Birthday Ashley
Hard to believe you would be 17 today

We love you and miss you so very much

Wednesday, September 11, 2013 9:13 PM CDT

How many commercials have you seen for Childhood Cancer Awareness Month?
Did you know September is Childhood Cancer Month?

Ive seen ZERO commercials. When will our kids be just as important as Breast Cancer Awareness ? All I want is to see GOLD ribbons for September is that too much to ask? Breast cancer awareness is very important I just wish September for our kids was like October for breast cancer, maybe one day....

Tuesday, March 26, 2013 8:53 AM CDT

HAPPY 11TH BIRTHDAY RYAN!

It's hard to believe Ryan is turning 11 today so very happy for Ryan. So very sad Ashley isn't here to celebrate with us.

Ryan is way beyond his 11 years. He is an amazing young man with a huge heart.


love you Ash

Sunday, March 3, 2013 12:55 PM CST

Some of the lyrics to the song "Carry On" By FUN............

Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come
We will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Carry on, carry on

Thursday, December 13, 2012 7:52 AM CST

December 8th marked 5 years since Ashley passed away. I can't believe it's been 5 years. After 5 years,the pain is just as intense , we miss her just as much and love her more than ever.

Holidays are so hard. I still haven't gotten used to buying 3 of everything instead of 4. Such an empty spot inrout family. I miss her belly laugh, her goofiness , the way she picked on Ryan then quickly had him cracking up. I miss all the little things that made her, her.

We are all doing ok, ups and downs. Ryan misses his best friend dearly. it's so hard to see your kids struggle to understand why when you your self don't understand.

We love you Ashley Nichole.

Taylor, thanks for,signing Ashley's guest book. I know she must love the conversations you have with her:) you were truly her very best friend ever. I hope you are doing well. Merry Christmas

Friday, November 2, 2012 3:53 PM CDT

St. Baldrick's Foundation Statement: The Budget Sequester - A Threat to Children with Cancer
October 22, 2012
“The sequester is a real threat that endangers an entire generation of children with cancer. It would be disastrous for childhood cancer research.”
Peter Adamson, MD
Chair, Children’s Oncology Group

The St. Baldrick’s Foundation calls on Congress to act now to prevent budget sequester cuts that threaten the more than 13,500 children who are diagnosed with cancer each year in the United States, the tens of thousands of infants, children, teens and young adults currently in treatment, and the 350,000 survivors of childhood cancers that live in our country.

The Realities of Childhood Cancer
Collectively, the dozen malignancies that are known as childhood cancers make up the #1 disease killer of children in the United States. Every 4 minutes, one of every five children diagnosed with cancer dies.

While progress in treatments for childhood cancers has largely been for one disease, many have cure rates of 5r less. Young cancer patients endure chemotherapy, radiation and toxic therapies that leave two out of three of them with learning disabilities, hearing loss, heart disease, infertility, secondary cancers and other lifelong problems. Much more work is needed to reduce the long-term and life-threatening side effects of the existing standard of care.

At this time, researchers have done all they can with the drugs and therapies currently available to children with cancer. Patients, families, and researchers are hopeful that new treatments will be developed and approved soon. Now, children with cancer need advancements that are only available through research.

Much about cancer in general has been learned and can still be gained from continued, sustained investment in pediatric, adolescent, and young adult research. Many of the common therapies available to adult cancer patients today were pioneered in the treatment of children with cancer, including chemotherapy and bone marrow transplantation.

The Landscape of Childhood Cancer
As members of Congress debate the budget sequester, we ask that you all consider the entire landscape of childhood cancer research. Today, the incidence of childhood cancer is on the rise and threatening to offset the gains made over time. Pediatric oncology research is funded primarily by the National Institutes of Health (National Cancer Institute) and private philanthropy (including the St. Baldrick’s Foundation.) As it stands, a mere 4f the NCI’s total annual cancer budget (and only some of those funds are available for new programs) is allocated to all pediatric, adolescent and young adult cancer research.

In comparison, cancer research focused on adults, median age of 66, receives 96f the annual NCI budget with 60f total funding for adults coming from the pharmaceutical industry. Childhood cancer research receives no funding from industry, as it is not profitable for pharmaceutical companies to develop and manufacture pediatric oncology drugs. The “playing field” is vastly uneven for childhood cancer research, even without the budget sequester. As Eugenie Kleinerman, MD, Chair of Pediatrics at the MD Anderson Cancer Center, says, “Curing childhood cancers is equivalent to curing breast cancer, in terms of patient years of life saved.”

How the Budget Sequester Threatens Children with Cancer
Ninety percent of all children treated participate in the clinical trials provided by the Children’s Oncology Group, the NIH-funded pediatric cancer cooperative group. These clinical trials are young patients’ best hope for a cure. The COG is an innovative research engine that unites more than 8,000 highly dedicated pediatric oncology physician researchers who donate their time at more than 200 children’s hospitals, universities, and cancer centers. The world’s largest organization devoted exclusively to pediatric and adolescent cancer research, COG provides front-line therapies to the children and adolescents enrolled in more than 100 clinical trials at any given time. As a result, the COG has become the model for other NCI cooperative groups.
Disastrous Domino Effect for the Children’s Oncology Group
The planned budget sequester cuts of $2.4 billion to the NIH would hit kids with cancer extremely hard — now and in the future — by setting off a disastrous domino effect for the COG that would impact childhood cancer research for years to come. NIH funds for childhood cancer research would be slashed, causing enormous downstream effects. COG research geared up for 2012 would be halted, meaning that projects slated for 2013, 2014, and 2015 and beyond would be cut. Highly-trained COG staff members who work with researchers to coordinate clinical trials would be laid off. As a result, the intricate workings of the COG would freeze. If this were to happen, it will take years to restore the COG to the current pace of operations. Congress will have effectively denied the youngest, most vulnerable cancer patients the cutting-edge therapies they depend on to survive.

FDA Drug Development and Approval Compromised
Children with cancer depend on the innovations available through research and through the drug development process. The wide reach of the budget sequester would not only devastate childhood cancer research, but also the Food and Drug Administration, with $318 million in cuts slated for the agency. The FDA’s ability to review and approve drugs and therapies for patients of all ages would be severely compromised.

Children with cancer are especially vulnerable, as they receive oncology drugs originally developed for adult patients. The toxicity of these drugs causes severe side effects and extreme long-term effects in these young patients, including heart disease, secondary cancers, infertility, and disability, among other problems. New, highly-targeted therapies are desperately needed to treat pediatric cancers. Added to this challenge is the fact that pharmaceutical companies often shy away from developing childhood cancer drugs because of their low profit levels (only two drugs have been approved by the FDA in the last 20 years to treat children with cancer). Further delay of the FDA’s review and approval of childhood cancer drugs and therapies will result in more children dying of cancer.

An Entire Generation of Childhood Cancer Patients Needs Congress’ Help
Robert Arceci, MD, PhD, King Fahd Professor of Pediatric Oncology at Johns Hopkins University School of Medicine, co-director of the Michael J. Garil Leukemia Survivor’s Program, and Chair of the St. Baldrick’s Scientific Review Committee, describes the sequester by saying, “…the real lives of present and future children and adults are at stake by continuing to strangle research, science and translation of knowledge for the betterment of humanity. A sequester would be devastating.”

An entire generation of childhood cancer patients and survivors is watching Congress, wondering if they will continue to have access to the most promising treatments and therapies available if new, less toxic, more effective treatments will remain in the research pipeline. For young cancer patients, the budget sequester is not about public policy, it is a direct threat to their hope for cure, a direct threat to their lives.

Congress: Please Act Now to Stop the Sequester On behalf of all children and teens with cancer, we appeal to every member of Congress to take the necessary steps to prevent the budget sequester, or at the very least, protect NIH/NCI and FDA funding from these devastating cuts.


The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

The St. Baldrick’s Foundation is the largest private funder of childhood research grants in the United States, second only to the U.S. government.

OUR KIDS NEED MORE FUNDING!!
Please help our children, your children no one knows why some children get cancer and some don't. Children can be healthy one day only to be diagnosed with cancer the next day. Childhood cancer does not run in our family yet 2 of our 4 children were diagnosed with leukemia. I never though our family would go down this journey but we are. Please help support childhood cancer research in any way you can.
No parent should have to bury their precious child
Research needs to continue to save the children who are fighting today and to those not yet diagnosed.
Thank you

Friday, November 2, 2012 3:51 PM CDT

http://www.stbaldricks.org/advocacy/news-and-events/title/St.+Baldrick%27s+Foundation+Statement%3A+The+Budget+Sequester+-+A+Threat+to+Children+with+Cancer/id/1929

Sunday, October 21, 2012 3:17 PM CDT

(If you are viewing this on an ipad, you wont be able to see the slide show at the end unless you use the puffin web browser instead of safari, its a free app in the app store)


Monday October 15th Ryan had his annual oncology check-up

Ryan is now 6 YEARS CANCER FREE!
His exam was perfect and his labs were beautiful!!

He is now,10 years old, in 5th grade. His first semester grades were all A's except for 1 B in Math. Math is his hardest subject, remember all the math steps is kinda of difficult for him but he still managed to get himself a B!!

I so wish Ashley was here to celebrate with us, I know she is watching over him from above and is surely very proud of him!!

Ryan's next appointment is October 2013!

Thursday, September 13, 2012 5:49 PM CDT

{{{{Happy Birthday Ashley Nichole}}}}}
We love you and miss you so very much
Happy Sweet 16


I hope you could see the balloons we sent up to you<3

Miss you kiddo.....

Thursday, December 8, 2011 7:51 PM CST

Ashley passed away four years ago today. Doesn't seem like four years.
I can remember that day like it was today. Those memories are forever etched
In my head, some I would just rather not have others I will forever cherish.
It's so hard to block out the last week in the hospital. So many things a parents should never have to hear, never have to see. I've seen my grandfather, grandmother,uncle and aunt passaway, death is never ever easy, but to loose your OWN child, nothing prepares you for that, nothing. That pain is nothing I would ever ever want anyone to have to experience. Children should not die before their parents, it's not right and to see them suffer and struggle that is just horrible wrong. I've always said that I was very thankful that she did not suffer when she passed, she didn't but there was suffering, just not at that moment and I have to live with those memories implanted in my head for the rest of my life. I haven't mentioned that too much before because it's very private and I want everyone to remember the happy, spunky,beautiful, bunny loving girl she was. She was simply amazing and there are no words to describe her fully. We miss her so very much every day, some days like today are hard on all of us. We released big blue balloons today in her memory. I hope she can see them and read the notes we attached.
-We love you baby girl-

Friday, November 25, 2011 9:54 PM CST

It's been awhile...
Hard to believe it's been almost 4 years since Ashley passed away.
No, not any easier. She would have been 15. Starting driver Ed. Mark and I
Alway joked about how she would be the one to sneak out a d take the car.
She had a lot of spunk, so soft hearted, so loving, so stubborn! So very funny.
I still haven't watch any family videos since she passed away. I would love to but I'd probably need a week to gather my composure again. Soon...

Ryan is doing great. He just had his tonsils out on Nov. 17 so he is still recovering from that. Lots of ice cream, lots of pain meds! He hates turkey so he was thrilled to be able to eat ice cream and Mac and cheese for dinner!

Jennifer and Kelsey are doing well also busy with their "stuff" :)

Mark and I are doing pretty good most days, as always this time of year
Is hard. She passed away Dec. 8, so that day is just around the corner. Christmas is just not the same without all my kids around the tree.

Thanks for still coming by to check on us.
I hope all of you have a wonderful holiday with your families.

Robin

Tuesday, September 13, 2011 12:39 AM CDT

****************************************************

HAPPY 15th BIRTHDAY

ASHLEY!

We miss you so very much and love you with
All our hearts......

Love you baby girl <3

Monday, April 11, 2011 10:07 PM CDT

11 years ago today Ashley was diagnosed with Leukemia, it was the
"good kind" 90 percent curable......

Sunday, March 27, 2011 9:16 PM CDT

Happy 9th Birthday Ryan!!!
Ryan turned 9 on the 26th. He had his very first sleepover with two of his classmates. They didn't get much sleep but they had a lot of fun playing xbox and playstation together. This was the first time I met his friends and their mothers. It's always hard answering the question "how many kids do you have" I did t really answer directly I just introduced them to Jennifer and Kelsey. What do you say in a brief 5-10 min first time meeting? I really didn't want to explain the situation and I'm sure if I did they would have been lost for words and it would have been awkward. They also have no idea that Ryan himself had cancer. Some day when I get to know them better I will mention it if the time is right.
Birthdays are always hard without Ashley. She loved making stuff for the birthday person, loved the decorations and just simply a reason to celebrate with family. We miss her so very much.

Ryan will be 5 years cancer free July 28th, 5 years, wow......amazing.
Finally Mark and I will breathe a little easier. I still hear the stories of children being off treatment for 5 or more years and relapse but they are few. We pray that Ryan will be one of the children that will be able to live a long and healthy life cancer free.
I pray for all the children still fighting and for all those that will fight in the future.
Thank you for checking in on us.
Chad, it was nice to read your message in the guest book. Ashley a d Ryan both loved going to clinic and you had a very big part in making them so happy. Thank you for all you did for our children it means so much to us. Hope you are doing well.

Robin

Saturday, February 12, 2011 9:22 AM CST

It been awhile since my last update, sorry about that. Things here are going fairly well. Kids have fitted into the new schools nicely. They are all looking forward to summer

Ryan is doing well. He has had a rough winter with infections, Christmas day he got pneumonia. Thankfully it didn't really hit till around 8pm Christmas day so he was able to enjoy opening all his gifts and enjoy them till his fever hit that night. He did his 10 days dose of antibiotics then ended up with strep throat a week and a half later, did another 10 days of antibiotics then 3 days later ended up with strep again. ....yes I had them run labs on him! And they were perect! He will finish his antibiotics today so hopefully that will be the end of illnesses for him for awhile atleast. I am setting up an appointment with an ENT to see if his very huge tonsils need to finally come out. He is doing well in school, struggles a little with memorizing things like multiplication tables but other than that he is getting good grades. Cursive writing is also a big struggle one of the chemotherapy drugs, vincristine is probably the culprit for that. His small motor skills just sent what they should be and holding a pencil the correct way is a little challenging which makes cursive writing difficult he does have a 504 plan and a great teacher who is very understanding.
He will have his yearly appointment with his oncologist in September.

Jennifer and Kelsey both have some kind of bug right now. There is just so manus bugs going around school this year it seems that one of us is always sick with something. I too just finally got over pneumonia, Ryan was always good at sharing! Some how Mark has managed to stay pretty healthy through all of this!
We love the weather here! The biggest snowstorm we got this winter was about 3 inches! And then it's gone in one or two days! The kids get snow days for one inch of snow! Kinda crazy but they love it. It's supposed to hit 60 here next week already! We are in southern Illinois no Florida ! Strange but I really love it!
Nurse Jane , if you are reading this I've tried sending you a few emails now but I don't know if you are getting them? They might be going to your junk folder?

Ryan turns 9 nxt month! 9 hard to believe so much time has pasted. He was dx at the age of 21 months it really seems like just yesterday that we were doing his Chemo treatments-- life goes on.....

Ashley passed away 3 years ago... I feel every second of that time. I'd give anything to be back at st. Vincent hospital with her doing crafts, playing games with nurse Jane and nurse Deb. Those days weren't always fun but there sure were many good times. I try to image what she would look like today at 14 yrs old, I imagine pretty much the same, long wavy blonde hair, probably not much taller, a giggle that makes your heart melt, and a stubbornness that would probably drive me crazy, I wish she was here to drive me crazy:). I hate that life to go on without her, in some ways it stands forever still while everything around us moves on.
I don't understand why children have to go through things like cancer and death. I suppose I never wlll. Ryan amazes me every day. We are so very lucky to have him here with us. With Ashley complications I expected none the less from him. Thankfully we were spared that with him. He is pure joy, as are Jennifer and Kelsey. I just look at him and smile and think how very proud Ashley is of him.

Thank you for those of you who continue to still come here and check on us. Jane---- email me:)

Robin

Wednesday, December 8, 2010 2:18 PM CST

Ashley passed away 3 years ago today. I try hard not to remeber all the things leading up to her passing, but its incredibly hard to keep blockig them out of my mind. We are very thankful that when she passed it was very peaceful I later learned that, that is not always the case.
A parent just should not have to bury their child. A parent should not have to wath there child suffer and not be able to anything about it. There are t hings that she went through during her 8 month stay at children's hospital that I pray no parent every has to see, things I will never post about, I owe her that dignity, her privacy.
We did have many good happy times with Ashley and beleive me I really try to fill my thoughts with those days, but those nightmare days and forever emerge in me, they pop up pretty much every day, at any moment, triggered by the smallest of things.

Ashley was a beautiful daughter, an amazing young girl with a huge heart. She told me once when we were talking about babies that she wanted to adopt kids when she got married. We never discussed with her the fact the she most likely would never be able to have her own children, she just came up with this on her own. She just wanted to give a little child with no family a home. Thats the kind of child Ashley was, I use the word "child" lightly, she may have been a child in age but she was much much older than that emotionally. She knew what was important in life, she knew things didn't always turn out the way you wanted them too, she knew life was hard, she knew that all too well. Being "sick" was pretty much all Ashely knew, being diagnosed at the age of 3 1/2 she really didn't know anything else. I don't think she really thought of herself as being sick, it was just her life. She was still happy, still very loving. 8 years of fighting cancer that was her life, but she met some of the very best people on this journey of hers, incredible nurses (you all know who you are :) ) Wonderful loving Dr's, how many dr's do you know that can do the "scooby dance"? (we love you Dr Brandt) Ashley had many dr's over the years, her oncologists pretty much stayed the same until we had to move to get her a transplant, but there were dr's of all kinds caring for her and she really cared for all of them.

What an amzing girl we have, in our hearts forever.

Love your children, try to laugh when they make you want to scream, trust me start laughing and you will be sure to get their attention :)

If you get the chance take a few mins to look at all her pictures here on her web page, give her a smile and let her know she is loved every day......

Thursday, November 25, 2010 8:34 AM CST

Another Thanksgiving without Ashley. Our last Thanksgiving with her was spent in the hospital while she recovered from transplant. She acually felt ok that day, not wonderful but ok enough to have Mark bring dinner in for all of us and some of the nurses too. All of is in one tiny room. We were all togethr and thats all that mattered. Many many holidays have been spent inside the walls of a hospital, wether it was for Ashley, Ryan or both of them together. I'd give anything to go back to that day.

Holidays are so very hard. All the pain of her being gone rising even further to the top and all of us feel it. I don't think anyone really realizes how really difficult it is for families like ours. Years have passed for everyone else and yet in our world things kind of move on but they are at a stand still in our minds. Our children are stronger than they should have ever had to be. They miss their sister very much.

We will have Thanksgiving dinner at our house, just us, like we always do. It would be hard for us to be anywhere else. There are too many emotions flowing around. We all feel "safe" at home.

We are very thankful for our family, saddened in our hearts but thankful for the health of Ryan and all of us.

Ryan is doing well. He does have a pretty bad cold today and low grade temp, but thats just "normal" kids stuff....right? Probably...my mind always "goes threre" but not as eaily as it used too. 4 yrs in remission is quite a big deal and we hold onto that.

Enjoy your families,
Robin

Monday, September 213 2010 8:40 AM CDT

Today is Ashley's 14th Birthday.
Ashley was born on Friday the 13th, forever our lucky day.
Today is a hard day, very emotional. I always decorate the kitchen with streamer and balloons for all my kids birthdays. Its hard to see the kitchen so bare today but decorating doesn't feel right either, plus it would be to heartbreaking to do. I'd like to post pictures from all her birthdays and I might stil do that but most of our pictures are still packed up from the move.
I wonder what Ashley would be like today, 14. I imagine that she would be giving us a run for our money! She could be very stubborn, but so caring and sweet. On the Halloween right after her transplant we were of corse in the hospital, and she wanted to make up halloween gift bags to pass out to all the kids that were also stuck being inpatient on the oncology/transplant floor. So we made up bags together and put all the kids names on them and went from patient room to patient room and passed them out. If you've never been on a pediatric oncology floor before its quite different than a "normal" hospital floor. All rooms have a little room connected to them before you can acually walk into the patients room, this room has a sibk area were you need to wash up before you can enter......anyway,we didn't acually get to hand the bags to the kids you can't really enter their rooms in fear of giving the child any germs or giving any to Ashley.
Kind of got of track there, I just wanted to paint a little picture of what it is like on the oncology floor.
Halloween was Ashley's favorite holiday. She absolutly loved deocorating our house with all kinds of scary stuff! Visiting the halloween shop was like her walking into toy r us on cCristmas! So every year we keep up her tradition and decorate our house with creepy things and spooky music. In the past I've told you how much Ashley and Ryan were alike, and they were, except when it comes to Halloween! Ryan HATES all the creepy stuff! He asked me the other day "are we hanging all those skeletons up again this year"?? He's a funny boy!

I wonder what you get to do in heaven on your Birthday? Do they celebrate Birthdays? Or do they celebrate the day they arrived in heaven? I'd like to think they do both probably, we however do not celebrate Dec. 8, the day sheearned her angel wings.
As much as we knew she needed to go, as much as I knew her pain would end, that she would finally be able to be free from all illnesses we didn't want her to go, she needed to go. I wish it would have been different, I wish I could change some choices that were made but I know I can't and we did everthing we could possbily do to save her.
We miss you so very much Ashley
Happy Birthday baby girl.





Sept.2


September is Childhood awarness month.
Our ribbon is gold.
Here is the video that made a couple years ago in honor of our children.
Ashley and Ryan are the first slide where you clicked on the video, they appear again later in the video, same picture.

Love you Ashley.

Saturday, August 7, 2010 5:31 PM CDT

July 28th marked Ryan being off treatment for 4 years. He is doing great. This year he will be in 3rd grade, Jennifer is a senior, Kelsey is a sophomore and had we not held Ashley back in 4th grade she would have been a freshman this year. That's so hard to imagine. She would be turning 14 this Sept.
The pain of her being gone never goes away. We miss her so very much.

Tuesday, May 25, 2010 5:27 PM CDT

Rtan saw his Dr.ast week and all is good. Ryan's lab are perfect. Ryan's only issue is his excema which for what ever reason is havning a field day all over him. We have a cream to put on it (one of many different kinds of lotions and potions) the rash doesn't really bother him it just looks not so nice, if you saw him you would think he was gettng over the chicken pox because the rash is spotty, it's "only" on his arms and legs. And it doesnt seem to bother him much.
Ryan will continue to see an oncologist once a year for how long I'm not really sure didn't think to ask that question. We will figure all that out when we get settled.

July 28th 4 years off treatment. Pretty cool huh?

Miss you tuns Ashley Nichole.........

Thursday, April 8, 2010 4:08 PM CDT

Easter here was ok. Easter is a hard holiday, as many of the holdidays are, but when Ashley was first dx it was the week before Easter. She was dx on April 11, 2000, this coming Sunday it will have been 10 years from the day she was dx. So this makes this time of year pretty miserable.
I never would have thought 10 years later we would be were we are today, without her here with us. So that's why it was an ok Easter.

Ryan is doing well. He will have his first appt in the after care department in June, 4 yrs off treatment for him at the end of July. He has been very healthy, no illnesses at all. He does have problems with eczema flar ups and allergies but those are easy fixes so no worries there.

The girls are doing well also, everyone is anxious for the school year to be over with.

Mark and I are doing ok, Ashley is on our mind every single second of every single day. You never stop missing them, the hurt and saddness is always there, we've just learned how to hide it better, at least I think we have. It's been two years so I think some people may think that we have moved on or should have moved on, you do "move on" just not lime you would think. We move on because we have too, not necessrly becuase we want too.

But all in all everyone is doing pretty good so that we are thankful for. Thank you to everyone who still come here to leave messages, I do read all of them. Take care.

I love this picture of Ashley, when she was first dx her nurse Kimberly gave her a sheet of stickers, this is what she did with them.....

She was 3 1/2.....

Best Buds Always...


These pictures break our hearts but also give us much joy....joy through a lot of tears...
Miss you baby girl.
Robin

Monday, January 11, 2010 2:29 PM CST

6 years ago yesterday Ryan was diagnosed with leukemia. He was 21 months old. He will be 8 yrs old in March. This July he will be 4 yrs off treatment. He is an amazing boy and we love him with all our hearts, Ashley would be very proud.

Sunday, December 20, 2009 8:30 AM CST

Dec. 23,2009
Love ya Ashley. Missing you.

Christmas is right around the corner. I'm still not so ready for it to come.
It's hard to celebrate when every time I buy a gift for one of my children Im buy three when I really so badly want to buy four. It really doesn't get any easier it's just that I've gotten better at being able to block some memories out. Ashley was (and still is) a huge part of our family, it's just so difficult to not have her here with us. I'm sad for Mark and I that we
are not able to see our little girl grow up but I'm equally sadden, if not more so for my other children not to have the sister in their life they so much adored, their buddy, best friend. It comes out at random times their saddness their hurt. We just all miss her so very much. It's been two years since she left for heaven but in our hearts it was just yesterday. I suppose it's a pain that a person learns to cope with. Life does go on but sadly it's just not as fun as it should be.
Miss ya big blues........

Tuesday, December 8, 2009 9:12 AM CST

Two years ago today Ashley left for heaven. It's hard to beleive it's been two years already. My heart aches just as much today as it did that day more so even. The day of Ashley's service we got a big snow storm. What is the weather forcast today?? Up to 12 inches f snow tonight into tomorrow. It makes me smile to think that Ashley probably has a lot do with it. Ashley loved the snow and she loved that I hate it and would mOe sure to always rub it in my face whenever we got any. I still hate the cold weather and really don't like snow but I have to say I do smile to se those first few flakes come down and think of the big smile that would be on her face. Just yesterday when Ryan was at an eye Dr apt the assitant ask him if he liked snow Ryan said "my sister Ashley who passed away liked snow". The poor women was stunnd and didn't know what to say, on the other hand Ryan just kept rambling away about how Ashley would build forts for him , how the two of them loved to have snowball fights. He went on and on. I was tearing up but it was so great to hear him talk so freely a d happily about her. Ryans apt by the way went great and his labs and eyes are perfect!
I am trying hard t block out all the memories of the days preseding this day. To say they were awful is a huge understatement. To watch our daughter fight so hard was heart wrenching so those memories I try to keep aside and try to fill them with the happier ones. It's. That's. Ot an easy thing to do but I try. We all just miss her very much. I don't understand why things ended the way the did inget angry sad all the emotions come flooding in then I just have to close it out for awhile because it reallt is just too much to handle.
So when you are watching your kids playing and running around in the snow just sit back and smile and say thanks Ashley for the snow!
Love ya big blues.....

Friday, December 4, 2009 7:52 AM CST

Things here are pretty much calm
Jennifer our 16 yr old just had her tonsils out a few days ago, so
she's not feeling the best. I guess the older you are the more painful this surgery is, but it is only tonsils so that we can handle.
Ryan is doing ok. This fall has been hard on him with illnesses. I took him to the asthma/ allergy dr yesterday to see if he could get the seasonal flu shot, he's allergic to eggs. The skin prick test went fine so he did getthe shot. They watched him for 30 min then let us go, no problems. This morning he is running a low grade temp, his arm is very sore a d he has a baseball size warm spot on his arm where the shot was given but these are all normal reactions to the vac,I am keeping him home though. His infected eczema is stilll not totally cleard up , plus he started another cough Monday so his dr put him on a other antibiotic, bactrim, for 14 days in order to hopefully get the eczema cleared up and to knock what ever little bug out of him once and for all. I'm not thrilled with him being on another antibiotic, this is the fourth one in, what in about two months? Each time it's been different one. He does go back to see his oncologist on Monday to have his eye rechecked, last apt his eye jittered back and forth when they did the "follow my finger" test on him. I guess your eyes can do that sometimes when you are fighting virus, so they are pretty sure that is what is going on with him.
That is about all that is going on here. I hope everyone had a wonderful Thanksgivng.
Robin

Friday, November 20, 2009 9:27 AM CST

Everyone here is feeling much better. Ryan is doing good. He did get
another fever/cough the week of Nov. 9, missed another week of school,
but that was mostly to his cough, fevers didn't get too high and they didn't
last too long. He had an apt with asthma/allergy yesterday for an asthma
evaluation, pretty much what we thought "illness induced asthma"
so he has some new meds he can take if he gets sick again, this should
help a lot. He had labs drawn too which are completly normal. He is doing
wonderful!

Thursday Oct. 29,2009 8:30 AM CDT

No fever for Ryan since 10pm last night! Finally i think he is getting over this flu! He is still using the nebulizer, but even his cough is a little better!
Robin
************
Oct. 28, 2009
Ryan is still running fevers, 102.9 right now. The nebulizer is helping with his cough. He's no worse though. I'm hoping tomorrow will be a day of no fevers so we can avoid going back to clinic on Fridsy. I really dont know what they would do for him, most likely just make sure that his lungs still sound clear. His cough sounds more "croupy" not "junky" so the amoxicilin must be doing something.
Thank you again for checking in.
Robin




October 27, 2003 Ashley relapsed for the first time. Sounds strange but I would give anything to go back to that day. It was a horrible day, so many complications, but she was here, with us. Plus thats when we met one of our most favorite nurses... Jane, now Jane if only you didnt give Ashley that tylenol! Lol! Dr jogal was so mad at you!! Ashley was scheduled for a procedure and was supposed to be "NPO" (nothing to eat or drink) but the procedure was scbeduled until later
so Jane thought it would be " worn off by then" but the things go at a hospital he procedure got pushed up to an earlier time and she couldn t go
because JANE gave her tylenol. We joke about that day all the time. Yeah, I wish we could go back in time as bad as it was I'd go in a second.

Love ya Ash

Ry is still sick. He had a horrible night last night. He was coughing/wheezing all night long, it was his worst night yet. He is still running. 102.5 temp. I had to give him a nebulizer treatment because his coughing was non stop. That seems to help a little. I'm supposed to take him back in on Fri if he still has a fever/cough hopefully he will be feeling better by then.
Thanks again for checking in.
Robin
***********************
Ryan did great Sunday, no. Fever, hardly any coughing, pretty much back to normal. I was going to keep him home today just to give him one more day. Well he woke up at midnight coughing and hacking all stuffed up, and another temp 101.1 geeeeeez! So I took him back in to make sure the bronchitis wasn't getting worse. His lungs acually sound good, so that was reassuring. His Dr. Said that this is what this flu does, trick you into thinking you are getting better than bam! Knock you down again. So he will be home again tomorrow, got to be "fever free for 24 hours" in order to go back to school, fever or not i wouldn't send him hacking all over everyone. That means he misses the field trip tomorrow which I was suppose to chaperone. Lets hope he can go fever free tomorrow so he can go to the class halloween party Wed. , sadly the way he sounds tonight I kind of dought that will happen, which is a bummer he already missed the big school party Friday, now the field trip.....hopefully he can go trick-or-treating Saturday. If he still has a temp Friday or his cough is worse I'm supposed to bring him back in. Day 4 of amoxicilin......6 more days to go.....





After a couple of days with high temps Ryan is much better today,I am really surprised because it took his sisters and I a good 7 days to get over this bug. Maybe it helped that he is on amoxicilin, you wouldn't think so though being a virus, his cough is about the same, no worse though. I'm going to keep him home tomorrow just to be sure. He has a field trip that i am chaperoning on Tuesday so he should be good to go!Plus he has a class part on Wed. I'm not used to him getting over an illness this fast, thats a good thing!
Thanks for checking in,
Robin


Well Ryan woke up at 2:00 am this morning with a 102.6 fever. I was really hoping that this flu would some how miss him no such luck. Since he tends to get hit hard with respitory symptoms i am goimg to bring him in , in hopes they will give him tamiflu. I dont know what the guide lines are for being petscribed thst mrd hopefully thete wont be any problems getting it for him The girls are jjust st the point were they are starting to feel better. I ataered feeling better Tueaday but it kind of linguers on for a few more days Mark got hit with it Monday so he is miseeable. It really is a nasty bug. Im sure it is the h1n1 all the symptoms are there.
i hope all of you are able to sneak by without catching this bug but it seems to ne highly contagious. Our area doesnt have the vaccine yet, guess we dont need it now. I was really torn on if I wanted my kids to get it or not new vaccines always make me nervous but Iwas worried about Ryans reactipn to this virus. Im worried he will be one of the kids to have more complications, but due to his recent egg allergy he would not have been able to get ithe vaccine anyway.
so I guess I will see what the Dr has to say. I will keep you updated, thank you for checking in.
Well I took him in this morning, can you believe our clinic is moving into a new location so they shut down the whole entire clinic!? Everyone who is sick has to go to the urgent care, thankfully I got there as it opened and we were the second ones there, anyway...... Ryan's symptoms at this point are fever 103.2, headache, dizzy, coughing, sore throat, body aches. The dr said it sounds like h1n1. She took a listento his lungs and could already hear crackling inn his lower right lung. I was hoping she would perscribe tamiflu but in order to get that you have to be an infant or pregnant. She did put him on amoxicilin for 10 days so thats good hopefully that will keep it under control. He is doing ok the fever is stubborn and doesnt budge with tylenol but motrin seems to be working so far. Tonight was his halloween party at school he is pretty upset about missing that. They have another small class party next week, hopefully he will be better by then.

Thats it for now, thanks!
Robin

Friday, October 23, 2009 4:23 PM CDT

Well Ryan woke up at 2:00 am this morning with a 102.6 fever. I was really hoping that this flu would some how miss him no such luck. Since he tends to get hit hard with respitory symptoms i am goimg to bring him in , in hopes they will give him tamiflu. I dont know what the guide lines are for being petscribed thst mrd hopefully thete wont be any problems getting it for him The girls are jjust st the point were they are starting to feel better. I ataered feeling better Tueaday but it kind of linguers on for a few more days Mark got hit with it Monday so he is miseeable. It really is a nasty bug. Im sure it is the h1n1 all the symptoms are there.
i hope all of you are able to sneak by without catching this bug but it seems to ne highly contagious. Our area doesnt have the vaccine yet, guess we dont need it now. I was really torn on if I wanted my kids to get it or not new vaccines always make me nervous but Iwas worried about Ryans reactipn to this virus. Im worried he will be one of the kids to have more complications, but due to his recent egg allergy he would not have been able to get ithe vaccine anyway.
so I guess I will see what the Dr has to say. I will keep you updated, thank you for checking in.
Well I took him in this morning, can you believe our clinic is moving into a new location so they shut down the whole entire clinic!? Everyone who is sick has to go to the urgent care, thankfully I got there as it opened and we were the second ones there, anyway...... Ryan's symptoms at this point are fever 103.2, headache, dizzy, coughing, sore throat, body aches. The dr said it sounds like h1n1. She took a listento his lungs and could already hear crackling inn his lower right lung. I was hoping she would perscribe tamiflu but in order to get that you have to be an infant or pregnant. She did put him on amoxicilin for 10 days so thats good hopefully that will keep it under control. He is doing ok the fever is stubborn and doesnt budge with tylenol but motrin seems to be working so far. Tonight was his halloween party at school he is pretty upset about missing that. They have another small class party next week, hopefully he will be better by then.

Thats it for now, thanks!
Robin

Monday, October 19, 2009 8:00 PM CDT

Ryan so far is the only one in the house who isn't sick, though as I type that I hear him coughing upstairs. The rest of us, well I'm pretty sure we have the flu, h1n1 is going around the schools so I'm thinking that is what we have but not sure , they won't test you unless you meet the requirerments. Ryan always gets bad respitory problems with colds/flus so I am really hoping that this illness is the one he alresdy had and will pass him by, time will tell. Other than that nothing too much else going on.

Polar our puppy is almost 7 months old and quite a handful! But he is so much fun, Sadie can take him or leave him, usually leave him! He's a out 85 lbs now.

Thank you for still coming by here to check on us

Robin

Tuesday, September 22, 2009 7:22 PM CDT

Ashley's Birthday was a beautiful day...we only wish she were here to enjoy it with us. I don't suppose it will every get any easier.

The kids are back to school Jennifer's a Junior, Kelsey's a freshman, so far it all seems to be going ok.

Ryan is in second grade. The first day of school was Sept. 2. Ryan manage to get sick Sept 10th and spent the next week getting over a horrible cough, fevers that came and went and a lot of wheezing. It sounded like the H1N1 flu to me, but I was surprised when I took him to his reg. pediatrician that they are only testing kids if they are 5 or under, or are immune compromised, well Ryan is no longer considered immune compromised so he was not tested, which really shocked me because the schools are being so careful this year, watching kids for any sign of this flu. The school nurse was also surprised they are not testing kids with symptoms. His lungs sounded horrible and wheezy so they gave him a breathing treatment and did a chest xray, his lungs looked inflamed but not quite pneumonia, so he was perscribed an inhaler and steriods for 5 days and sent on our way, that was Monday by Wed he was still up all night coughing, not getting any better so back to the Dr this time the dr said he could her crackling so decided probably bronchitis and perscribed zithromax for 5 days. He is done with his meds and seems much better. My plan was to go in there and not ask for a CBC,...well I tried but he looked miserable and every nurse we passed commented said "oh he looks pale....Dr walked in " oh he does look sick, he kind of looks pale doesn't he?" OK can you do a CBC now please, geez, none of these nurses or the Dr knew his history (his reg ped was off that day) so they did a CBC and it was complely normal...that was a long horrible hour wait for those results, i felt so sick to my stomach, but I slept better that night having those results. So he is back to school and hopefully will avoid any more illness at least for a few weeks I hope.

Cancer will forever be the first thing I think of when he coughs, sneezes, sniffles.....breaths

Robin

Sunday, September 13, 2009 1:54 PM CDT

Today Ashley would have bee 13 years old, a teenager….
All my girls wanted their ears pierced when they were little I told them they had to wait until they turned 13. I didn’t want to have to be the one to constantly remind them to clean their ears, pick up their earring ect…plus my mom made me wait till I was 13 too so that was the age I stuck with. So I’m feeling a little sad that she never was able to get them pierced. So many times when we were able to “escape” on passes from the hospital for an hour or two Ashley would want to go to the mall, she always tried talking me into getting her ears pierced while we were there. I would have given in to her in a second, but at that point it wasn’t about being mature enough to take care of her ears it was all based on her not having an immune system, if she got an infection in hers ears because I let her get them pierced I would never have forgiven myself, but now being now, knowing how things turned out I wish I would have just have let her get them done, her doctors would have killed me but oh well. Hopefully she can get them pierced in heaven.

Even though Ashley would be 13 today she will always be 11 to me.
We made her a cake today and will also release some balloons blue of coarse, and one sponge Bob balloon, she loved Sponge Bob. This day is not easy by any means, its quite horrible really but I’m trying my best to make it happy, trying to make a good memory for the kids, trying for me to just get through the day. I wonder what things would have been on her birthday list this year? A new Rachet and Clank video game I’m sure and an ipod touch probably.

We miss her so very much, its just really very hard.
I’m sure she is having a grand part up in heaven, sadly there are many many children up there with her. One day, I hope I live to see the day, that childhood cancer will have a cure and not a cure in heaven but a cure HERE on Earth. September is childhood awareness month, but unlike breast cancer no one knows that, its very sad. I haven’t seen one news clip on it, not one commercial, nothing …I don’t understand that…..

Love you Ashley Nichole to the moon and back…………..mom

Monday, August 10, 2009 6:12 PM CDT

Ryan had his oncology apt today. All his labs were normal, every
single one! No "L" (for low) no "H" for high , NOTHING! And they
run a lot of labs on our kids so that is saying a lot!!!

Now that he is 3 years OT he does't have to go back for
6 MONTHS!!!!! 6 whole months I am thrilled! So sometime in
Feb he will go back. They don't schedule apts that far out so I will
have to call i. Jan to make an apt! I am so new to this. I am so happy
for Ryan. As we were leaving the hospital Ryan says to me "Mom, I wish
Ashley made it this far like me. Wouldn't it be fun if she was here with
us" Breaks my heart...... Yes Ryan it would be great if she was here with
us. I don't know why Ryan's leukemia reacted to the chemo and
Ashley's didn't I don't understand it, the same type of leukemia
and two totally different out comes.

Wish you were here Ashley, we miss you baby girl.......

Robin

Tuesday, July 28, 2009 8:35 AM CDT

*******3 Years Cancer Free!*******
I see I have it listed above that Ryan's last treatment day was July 31, both dates are right, July 28 he had his last clinic chemo in his port and on July 31 he took his last oral chemo at home, two days of celebration!


July 28, 2006 Ryan went OT- off treatment for leukemia.
Today is July 28, 2009 and Ryan remains cancer free.
Honestly I am shocked, if you would have asked me back then if I thought
Ryan would make it three years without his cancer returning without hesitation I would have said no. In fact I didn’t think he would make it one year OT. Well lets face it, we didn’t have much luck being OT with Ashley, her cancer returned 16 months OT the first time and 14 months OT the second time. Ashley are Ryan are so very much alike in every way I really thought that he would follow in the same footsteps. But here he is today, 3 whole years cancer free, in two more years they will consider him cured. I’m starting to actually believe that he really will be ok. I do though think of a friends child, and I know that friend knows who I’m talking about, who made it 3 yrs OT only to have his cancer return 2 months later. Thankfully that boy today is cancer free. I am amazed how well Ryan is doing, but I worry about him all the same. He is starting 2nd grade this year, two months into Ashley starting second grade is when her cancer returned, so you see where I am with this? Now Ryan was diagnosed at a much earlier age than Ashley was (21 months Ashley was 3 ½) so the time line there is different, but I can’t help think about it. He looks wonderful and has been very healthy all summer long. His last oncology apt went great, all his labs were in normal range. His next oncology apt is Aug. 10. I’m expecting the same great labs. After this apt his visits to the oncologist will go from every three months to every four months (I think we’ve never made it this far) I’m ok with that. I used to hold my breathe from one apt to the next, now I only hold it the week before his apt.


Ryan started swim classes this week, yesterday was the first day. Ryan has had no interest in taking swim class, but this year our neighbor, who has an in ground pool was offering swim classes so we decided to sign him up for that, again he was not happy with me, he said “why do I get to make the decisions for his life” well…your 7.…that’s why. I didn’t know what the problem was, I thought it was because he was shy. I think that has a little to do with it, but last night he said to me “what if I drown”? ahh, ok ..so we talked about that, but that didn’t seem to make him feel any better. I got to stay and watch the lesson. The class is small just 4 kids total and there all neighborhood friends so that helped a lot. He ended up having fun, but I could see he was a lot behind the other boys in his group. Because of that the swim instructor and I decided to move him to another class were she could give him more one on one help. So he will start that “class” at 10 today, just him and another girl in his group. This will be good for him, hopefully at the very least he will be more comfortable in the water.

So that’s about it with us, Jennifer and Kelsey are enjoying summer, dreading the start of the school year, I am too, It’s nice having everyone home.

Mark and I, we are doing ok, we miss Ashley every second of every day.

Thanks for checking in on us,

Robin

ps- Kyle's website is listed below in links.

Saturday, July 18, 2009 3:35 PM CDT

Thank you to everyone who said a prayer for sweet Kyle . Today he earned his angel wings. Please keep his family in your thoughts and prayers, especially his mother Denise. The pain she is feeling now is like no other, the feeling of loss is incredible, the hurt is agonizing and unbearable. If you are a close friend of Denise's please understand if she closes you out, or doesn't want to talk or seems angry with you, she's not, she's trying to figure out what the heck to do with her life now. Her life has been caring for her son and now that he has gone to heaven she is left feeling ever so empty. Reach out to her and if she rejects, try again another time, an again another time, one of those times she will release all that built up sadness, anger and fear and when she does just listen, now isn't the time to tell her it will be ok, because it never will be ok, ever...just listen and give her a big hug.

My heart is with you Denise and with your other children, Ty and Riley.

Riley just had her birthday yesterday. So many holidays in the hospital.

I prayed and prayed that Kyle would get his cure, I don't understand...he too fought leukemia for 9 yrs. Kyle passed away cancer free, 100 percent donor cells, the damn cure it killing our children, there needs to be another way.....


Ryan will be 3 years off treatment July 28th, only 2 more years to go until he is considered cured, I pray these next two years will go as well as the last three...

I hate cancer.

Wednesday, July 15, 2009 9:13 AM CDT

URGENT PRAYERS NEEDED
Our dear friend Kyle is again fighting for his life.  Please, please take a moment and send out a positive thought, healing light, or say a prayer that he receives a total Earthly healing.  He has been fighting so hard and need all prayers right now

Kyle

Friday, July 5, 2009 4:12PM CDT

***Kyle is in need of many prayers- here is his link:
PRAY FOR KYLE


****Katie Bronec****
Thank you for the kind guestbook entry. I'm so sorry to hear that your daughter has to fight this fight. Just know that not every case of leukemia ends like my daughter's story. Our son will be 3 yrs OT on July 28th and he is doing wonderful. Please if you every want to contact me for questions or just talk you can e-mail me @
gresh14@hotmail.com
Thank you, Robin

Things here are going well. We stayed home for the 4h and BBQ, played some penny poker with the kids, saw some fireworks from our house.

The 4th of July for us hasn't had many great memories- I won't go through and tell all the stories, moslty hospital stays with a very sick little girl.

Our puppy Polar is getting bigger every day, he is now just about 15 weeks and almost 40 lbs!! He is huge, and very loveable! He really is just one big furry stuffed animal! Sadie has put him in his place and he no longer, or at least less often tries biting her hind legs as she tries to walk.

I hope all of you had a nice Holiday weekend,
Robin

Tuesday, June 23, 2009 12:59 AM CDT

*****July 3*****
Our friend Kyle is in desperate need of prayers. He is back in the PICU struggling to breath. Please say a pray for him, for his mother. Please Lord don't let another child leave this Earth before his time, he has so much to offer this world, his mother Denise needs her baby boy healed with her ,here on Earth.

Kyle is struggling with what the Drs beleive to be Idiopathic pneumonia syndrome (IPS) which is basically a lung problem. If your child has gone through transplant and suffered from IPS , please contact Gina, her daughter Tatlor is at the same hosp as Kyle. Her site is:
www.caringbridge.org/visit/taylorjones
Denise is not going to be able to get away and check hher emails so Gina is doing it for her. Gina has posted her email address on her daughter's site.
Thank you. Robin
http://caringbridge.org/co/kylel




June 25th

****Please pray for a friend of mines
little boy**** Kyle is 12 yrs old and pretty much has fought the same fight as Ashley. He is now over 100 days post transplant with lung complications. Please pray for his lungs to heal and for strenghth for his mom. http://www.caringbridge.org/co/kylel

Thank you.



Ryan dentist appt went fine, though they did have to removed the whole tooth instead of doing the root canal. His tooth was in worse shape than it was a few weeks ago. So his has a retainer in the space were his tooth was to leave room for his adult tooth when it comes in , in a few years. He has to go back in next week to have the other side of his mouth worked on, but this should be pretty easy. Right now he is in a bit of pain but tylenol seems to be helping.

The dentist office is located inside children's hosp, so while I was getting coffee I ran into both Ashley's BMT doctors. It was hard to see them, I wish we were there doing stuff for Ash, too many memories in that place.

Robin

Saturday, June 20, 2009 8:24 AM CDT

Not too much new to report, kids are enjoying their summer break. Ryan is doing well, he goes in for a dentist appt on Tues to have some work done on his teeth, they are not sure if it is chemo related or not but he will need a couple of silver caps and a couple reg fillings. Dental work we can deal with though I feel bad for him because they are calling it a mini root canal, doesn't sound like tuns of fun. I don't remeber when his next Oncology appt is, I try not to think about them until I have too. I'm pretty sure its a couple months off yet.

Our new puppy Polar is just lots of fun. When we got him he was 8 wks old 13 lbs, I took him to the vet Monday and he is now 11 wks old and 27 lbs! Well we knew he was going to be a big dog but I was surprised at the 14 lb weight gain within a few weeks! Polar and Sadie are getting along pretty well, Sadie lets him know when she's had enough of his puppy energy!


Father's Day tomorrow, I know Mother's Day is hard on me I can only imagine its going to be just as hard on Mark. Holidays of any kind are just difficult, I'd just rather see them pass us by, its just so hard because Ashley loved holidays so very much, your probably thinking then we should try to enjoy them because she'd want that, well we try too for our kids but its a lot easier said than done.

Anyway....life goes on....we will never get over the loss of Ashley, we'll just get through it and its not much fun.

Miss you Big Blues :)


Robin

Monday, May 18, 2009 7:16 PM CDT

Thia is our new puppy Polar, he is just over 8 weeks old, he's a Great Pyrenees. He'll get up to about 130lbs!
The picture of all the dogs is from the upcoming "Santa Buddies" movie coming out this winter-The big white dog is Polar's Dad and the white puppy is Polar's half brother-pretty cool huh? Polar flew in all the way from California!

Thursday, April 30, 2009 11:41 AM CDT

****A few people have read my update below and have been conserned about me, I am ok, I miss Ashley very much the sadness has become part of our lives. So when i wrote this update earlier today yes i was in a moment of sadness. I just heard a song that reminded me of her and feel apart a bit, but these moments happen from time to time and right now I can think of her and smile and know that she is having a wonderful time in heaven making all kinds of crafts for everyone. Thanks for caring about me...day by day...****



April 26,2006 life once again was changed for ever, Ashley's cancer was back for the 3rd time. That was the start of 8 months straight in the hospital, first St V's and then air lifted to Children's in Milwaukee. I was listening to my ipod at the Y today and heard the song from "Guns and Roses"- "Sweet Child of Mine" I posted the lyrics below. As you read it, please think of Ashley and her big blue eyes and beautiful thick wavy blond hair.
I miss her so much, no day is easy, every day I'm crushed with saddness that she is not here with us, it doesn't get any easier you just try to tuck it under you skin the best you can, but that sadness is always sitting there right on top just waiting for anything that reminds me of her, its the little things that can turn me from feeling pretty good into a pile of mush and sadness, blue slushies (her favorite) a webkinz animal at the store (she loved webkinz)a construction crane (they were rebuiding the hosp and i saw that darn crane every day wondering if we'd ever get the chance to see the new wing completed, we didn't), "Green Day" songs, she LOVED Green Day, mostly Billy Joel, (i think thats how you spell his name) Salsbury steak,(steriod days always came with boxes of salsbury steak, eeew, she loved that we all hated the smell which lingured in the house for hours after she was done eating ) "soft shell taco supremes" Taco Bell was her favorite place to eat, although i rarely let her because i was so affraid it would be contaminated with some kind of funky germ, I should have let her.

There are so many other things, they just hit me out of the blue and then I can usually smile about the memory or cry about it, usually its both. Ryan had to make a family scrapbook for boy scouts this week. I put off collecting the pictures he needed because i knew it would be horrible for me to go through them. Well i have them all on a cd so i had to watch slide show after slide show to find the pics he needed. That tore me apart, pictures of Ashley bloated up on steriods, pictures of her rail thin from chemo, pictures of her healthy with beautiful long wavy blond hair, pictures of her beautiful bald little head, 9 years of pictures of her, healthy then sick, healthy then sick, then pictures of her and Ryan both plumpped up from steriods looking miserable.....it was hard to say the least, but he does have a great little scrapebook now with all his sisters in it.

Well I really didn't mean to get into all of this, i was going to post the song lyrics and thats it, so thanks for reading this far. The song is below if you'd like to read it.

Thanks for coming back to check on us.

Robin

"Guns and Roses" - "Sweet Child of Mine"


She's got a smile that it seems to me
Reminds me of childhood memories
Where everything
Was as fresh as the bright blue sky
Now and then when I see her face
She takes me away to that special place
And if I'd stare too long
I'd probably break down and cry


Sweet child o' mine
Sweet love of mine


She's got eyes of the bluest skies
As if they thought of rain
I hate to look into those eyes
And see an ounce of pain
Her hair reminds me of a warm safe place
Where as a child I'd hide
And pray for the thunder
And the rain
To quietly pass me by


Sweet child o' mine
Sweet love of mine


Where do we go
Where do we go now
Where do we go
Sweet child o' mine

{{{{Love you Ash to the moom and back}}}}

Monday, April 13, 2009 9:31 PM CDT

April 11 th 2000 at age 3 1/2 Ashley was diagnosed with A.L.L - Acute Lymphoblastic Leukemia. We were told "its the good kind of leukemia, its 85 to 90 percent curable, unlike A.M.L - acute myelogenous leukemia ,which is only 60 percent curable. To us there was and is no good kind of leukemia.

Here we are 9 yrs later without our precious daughter. To say we miss her is such an understatement, there is and always will be a huge hole in out hearts. We go on trying to live life, trying to care for our other kids who needs us so badly, they keep us going. No one should have to suffer the lose of a child for any reason, thre is no healing from this, you just go on the best you can.

Miss ya Ash...

Friday, March 27, 2009 2:05 PM CDT

**********HAPPY BIRTHDAY RYAN !!!!***********

Ryan turned 7 at 5:01 pm Thursday!!!!

It's hard to believe how grown up he is already, he was only 21 months old when he was diagnosed with cancer, just a baby. He doesn't really remember too much of those 2yrs 6 months of his life. I'm glad about that, but in a way its also sad because Ashley and him spent so much time together in the hospital getting their chemo. The were really close, Ashley just adored Ryan and Ryan looked up to her like she was the bestest smartest person in the world, and they would also fight and drive me nuts, I wish I could yell at the two of them today to just leave each other alone :)
He was so excited. We got him lots of army stuff, he is very into, very obsessed with the German Army, I don't know, I think a lot of it comes from playing XBOX, yeah I know he shouldn't be playing those games....but some things in life you just say, why not, a lot of it too is that I regret that I didn't let Ashley do a lot of things because I thought she wasn't old enough yet, little did I know she would never get a chance to be old enough. I always told my girls they could get their ears pierced when they were 13 (I don't know why I chose that age) Ashley wanted her ears pierced so bad, I wish that I had let her during those 14 months she was healthy in 5th grade, but I was trying to "keep my rules" and stick with them, well when she got sick again there was no way we could risked her getting an infection from pierced ears. She would always try to talk us into it though, on those few occasions when she'd get out on pass and we'd head to the mall, she say "come on , lets just do it!" Ya come pack from a 2 hour pass to the hospital with pierced ears, I don't think that would have gone over very well with the Dr's....but then again it would have made her day......so that’s why we ler Ryan play XBOX , yeah I know I should stick with my rules, but look were my rules got me last time, maybe Ryan will be healthy for years and years to come, but in the back of my head I know, tomorrow things could come tumbling down. He is almost 3 yrs off treatment, every year that goes by and he is healthy is another year farther away from possible relapse. But from having "done this cancer thing" for so long, I know way to much, know way too many families that their Childs cancer returned after 3yrs off treatment, some 5 years off treatment, so with ever cough, bruise, sniffle and fever cancer will unfortunately always be the first thing to come to my mind.

He had a great Birthday and he has a cold, coughing and sniffling.

We miss you Ash, love ya kiddo, to the moon and back, till the stars shine no more, and that’s a lot of love, sunshine angels trees fall down.

(I used to say this to the kids every night before they went to bed, when the girls were little they added the sunshine angels and the trees falling down parts :) )

Wednesday, February 18, 2009 10:01 AM CST

Hello, there isn't too much new going on here.

Ryan is continuing to do well. His next appt is at the end of the month, 27th I think.

Jennifer and Kelsey are working hard on their school work, waiting for summer to come!

Mark and I are doing ok, no matter how much time passes it is just as hard, we miss Ashley just as much. Everyday is a struggle. I wish we could go back and do somethings different, maybe there would have been a different out come, maybe not, who knows. We learned a lot those last 8 months inpatient with Ashley. My heart breaks for all the children who are still there, to all the new ones that will come in today, this weekend, for the parents that will hear the devastating news "I'm sorry your child has cancer". Not much else is heard after you hear those words, your mind goes blank, your body goes numb, you wonder how the heck that fever they had turned into all this, you wonder how you ended up on a pediatric oncology unit, when you only had an appt for an ear infection, your shocked to even know there is even such a thing as a pediatric oncology unit. You see little toddlers, bald little toddlers attached to IV poles, teenagers,...all ages, its so heart breaking. How does cancer hit our children? With no family history of pediatric cancer, with no warning, it takes over your life. When your main worry used to be , whats for dinner tonight, turns into how do we keep our child alive, its overwhelming and it happens just that fast.

I pray that all these children will have a uneventful weekend, that their parents will be able to sleep, that they have someone to lean on. That all the healthy children out there in the world will stay that way, innocent and healthy, may they never know the pain of cancer.

Robin

Sunday, January 25, 2009 7:28 PM CST

Ashley's dearest friend Taylor called me tonight to let us know that Ashley's bunny Twinkie passed away today. Taylor and her family were very kind to take Twinkie in for us when we moved to Kimberly. The house we were renting at the time would not allow bunny rabbits. Thankfully Taylor had no probelms taking care of her for us. Ashley saw Twinkie often since Taylor and Ashley were best of friends.

Taylor thank you very much sweetheart for taking such great care of Twinkie. A few weeks before Ashley past away she told us that she wanted Taylor to keep Twinkie forever. Taylor I know you took the very best of care of Twinkie, you did everything right, unfortunatly as we all have learned even when we love people/amimals with everything we have, even though we give them the very best of care when it is their time to go back to God its their time and all we can do is try to remember the good times, the times that our loved ones made us laugh so hard we cried, the times they said nothing at all and we knew exactly what they were thinking. Taylor please don't feel bad that Twinkie is in heaven, I know in my heart that Ashley knew Twinkies time was coming and was patiently waiting for her to say good bye to you. Ashley and Twinkie are together again, I can just imagine the smile on Ashley's face as Twinkie came hopping through those pearly gates!

Thank you Taylor :)

Robin

Saturday, January 3, 2009 10:22 AM CST

I've been wanting to make a new journal entry now for a few days, I was always stumped on what I wanted to say, first off, everyone is doing well.

It was our second Christmas without Ashley with us and it just seems so unreal. The time that has passed hasn't made anything easier, it just seems empty, again only 3 stocking were filled this year, we hang all four and Ryan insisted on having Ashley’s stocking this year, so he did. I can't imagine what kind of things go through a little six year olds head, to have seen his sister fight so hard for so long and then to be there when she left for heaven, what does he think of all this? He is very aware that he and Ashley had the same kind of cancer, although he doesn't remember any of his treatment, just the fun times he spent with his dr's and nurses. He's an emotional little guy, but he doesn't let any one see him upset and won't admit to it if you ask him, so it comes out in little pieces now an then at the oddest times.

Jennifer and Kelsey seem to be doing ok, but you never really know what’s going on in teenagers heads under normal circumstances.

Mark and I...well she was our baby, the pain of her passing will never go away, the missing her will never end, there will always be an emptiness inside us like your heart not ever fully pumping or your lungs ever fully filling. Losing a child is just the hardest thing we have ever had to do. I pray that none of you will ever have to feel this pain, maybe one day it will be easier to deal with, but it will never go away..

Love ya Ash


Robin

Monday, December 8, 2008 12:32 AM CST

***Thank you to our neighbors, the Brunos, Moylans,Scaffidos and Zimmers for sending us the beautiful flowers today, I think that was the first time I smiled all day, thanks guys***


1 year ago today Ashley earned her angel wings. It doesn't seem like a whole year has passed on by. We miss her so much. I wasn't sure if the girls knew what day it was today but they do and I ended up keeping them home from school for the day. Ryan is home too, he has strep AGAIN. His thoat was bothering him off and on this weekend so I figured I better take him in, sure enough strep. They did labs too and those all look good. He will see his oncologist on Dec 29 for his routine check up. Most likely he will need to get his tonsils out.

So thats really all thats going on here, trying to get up the motivation to decorate the house for Christmas. Thanks you to everyone who has been checking in on us, thanks for remembering Ashley..
Robin

Wednesday, November 12, 2008 6:28 PM CST

Not too much new to report, which is good...

Ryan got over his strep throat just fine, no illnesses since then. School seems to be going pretty good for him, he's not thrilled about it though. He said its not as much fun as kindergarten, plus now he gets homework!

Jennifer and Kelsey are busy with school, it seems to be going ok for them as well.

Its hard to beleive that Dec. 8th will be one year year since Ashley passed away, my heart just sinks typing that. We miss her so much. I want to watch some home movies, but don't know if I'm ready for that yet...

I still findt so hard to do normal every day things, I still worry like crazy every time Ryan sneezes, or panic when I see the school calling on caller ID, but as he gets further along off treatment the more I think that maybe he really will be ok, he's almost 28 months off treatment. His next appt is near the end of Dec.

Thanks again for coming to check on us,
Robin

Saturday, October 18, 2008 12:32 AM CDT

Not too much going on here.

Ryan missed school last Monday and Tuesday,strep throat. He is doing fine now,but still on the antibiotics for a few more days. We hate strep for obvious reasons, but with us Ashley and Ryan both got every couple weeks before they were first diagnosed with leukemia, now I know strep is very contagious and he most likely got it from someone at school, but I can't help to be a little anxious about it, otherwise Ryan is doing great. He has school confrences next week. He is having problems holding a pencil, Ashley too had this problem after treatment, some of the chemos he was on efect the small motor skills so this could be the issue, or then again just normal kid stuff.

Jennifer and Kelsey are doing well, grades seem to be much better so far this year.

Mark and I are doing ok...same ol' same ol' good days bad days.

Ryan's Dr's appt's are now every 3 months, so his next appt is at the end of Dec.

Robyn I am still so shocked to hear that Lexi relapsed, I am so sorry, please keep in touch and give Jane a big squeeze for me the next time you see her :)

Robin

Monday, October 6, 2008 6:02 PM CDT

Ryan had his Dr appt today, he is 26 months off treatment. All his labs were great. He won't have to go back to clinic for 3 months!

While at Ryan's appt we ran into Ashley's Dr., it was hard for me to see him, it brought back so many memories. Mark chatted with him for a bit, I pretty much hung out with Ryan while he had his stuff done. We also ran into one of the parents from the HOT unit, their son was also treated at st. vincent's before his relapse. Hope you guys are released soon:)

We are pretty much doing the same, good days, ok days, bad days.....or all three kind of days mixed into one. We miss her very much everyday, love ya Ash...

Robin

Wednesday, September 10, 2008 8:26 AM CDT

Saturday September 13th Ashley would have been 12 years old. She used to go through the "Birthday
Express magazine" over and over deciding what theme she wanted this year. Last year it was a puppy theme, she put up some of the decorations in her room, which are still there today. How do you take that stuff down? Ryan talks about her alot, he said he wanted to be the one to blow out her candles since she can't. Well I don't know if we are even going to do a birthday cake or not. To me she will forever be 11 years old, it is a celebration of the day of your birth, so how exactly do you do this?
We are going to go somewhere special for her birthday, a place she loved. I know she'd be happy to see us having fun, its going to be incredibly hard. Our 17 year wedding ann. is the day after her birthday, a mixure of feelings this weekend.
Ashley was our biggest baby, weighing 10lbs even at birth!Like all my kids she had a head full of dark hair, she never lost any of it. When she lost her hair to chemo I used to kiss her bald little head all the time, telling her I never got the chance to do that when she was a baby. I remeber being upset the first time she lost he hair, it was right before her 4th birthday. I was giving her a bath and her hair was just coming out in chunks, I tried to hold back the tears, she just laughed, so mfrom that point on I looked at things like she did, no big deal. We got used to seeing her bald little head, in fact when her hair would come back in it was kind of sad, she was beautiful with a head full of hair or bald.
I'm sure I'll add more to this entry later, but I think I'll stop it here for now. We sure miss you kiddo :)

Robin

Monday, August 25, 2008 3:23 PM CDT

I guess its been a while since my last update, sorry about that...

Ryan's appt went great, he is doing very well, again one of his labs was a little high (EOS 9) which really isn't that high at all, again its a lab that can be high if he has allergies, bug bite ect...

Hard to believe that school is starting soon. Jennifer will be a sophmore, Kelsey 8th grade,Ashley would have been going into 6th grade, Ryan 1st grade. Ryan has his open house tomorrow, we'll meet his teacher and bring all his new supplies. He's not thrilled with going back to school, but it doesn't bother him either. I'm not looking forward to the empty house, but then again some peace and quiet will be nice!

This time of year is hard for us, alot of remembering where we were this time last year...this time last year Ashley was finally discharged from the hosp and got to spend three wonderful weeks at home, just in time for her Birthday, which is also why its harder right now. She would have been 12 years old on Sept 13th. Mark and I are busy trying to figure out what we want to do that day, our 17 year wedding ann. is on Sept 14 so we'll probably combine those together some how.

I know I really need to post some new pictures here, I'll work on that.

Leah, you made me smile just reading your post, we really miss seeing all you guys every day (Leah was on eo Ashley main nurses) We will get togehter soon Leah, promise!

Tonya, thank you for checking on us I think of your beautiful little Noelle all the time, I pray that Ashley and Noelle are togther in heaven having a wonderful time, playing, running, all the things they could not do here.

Mark and I saw "Dark Knight" (Batman) the other day, in the movie the Joker says "Did you ever have to tell someone you love that everything would be ok even though you knew it wouldn't" I think of how many times we must have said those words to Ashley, our poor baby, we miss her so much.

Thank you to all of you who still come here to check on us, as our Dr from St Vincent always said to us "Hang in there guys"...Miss you Dr. Brandt :)

Robin

Monday, July 14, 2008 5:37 PM CDT

Ryan's Dr was today , not last week...whoops..anyway his appt was great all his counts are wonderful! He goes back on Aug 11, to mark his 2 years off treatment, acually his 2 yr mark is July 28 but they don't want him to have to come back so soon, if his counts are still good he will then go to every three month appt instead of the everyother month he is doing now. His EOS count was a little high today which is most likely caused by bug bites, so no big deal, but they will want that to be normal before they grant him the every 3 month appts. He did great as usually and collected lots of stickers. He lost another tooth a couple of weeks ago (two on the bottom) he's very proud that he can stick his tongue through the hole!

Jennifer and Kelsey are doing well, keeping busy, Mark and I too are doing ok, every day is still hard, but day by day I guess.

Thank you for checking in on us,
Robin

Tuesday, July 1, 2008 8:34 AM CDT

Not too much new going on here...trying to keep the kids busy, its only a few weeks into summer and they are already BORED!

Ryan and the girls are doing really well, his next dr appt is 7/7. He will be 2 years off treatment on July 31. Two years is a huge milestone for him.

Its really hard, every day we miss her so much I can't put it into words, a part of all of us is missing. It will be 7 months on July 8th, 7 long months.

Last weekend we were at the taste of Delafield, Mark saw a balloon go up in the air and said, "some kid somewhere is screaming for that balloon, Ryan said at least Ashley will get it! He thinks about her all the time, more than I think we know, they were so close, its hard watching him play by himself because I know Ashley would be sitting right beside him, making the game more exciting for him, or hitting him on the back of the head, yelling at him, calling him "Delila" (sp?) I miss yelling at the two of them to leave eachother alone :) We were always sepertaing them, one on one couch, one on the other, withinb min the two of them were cracking eachother up and best buds again, time out never lasted long with them.

Miss ya kiddo...

Robin

Saturday, May 31, 2008 5:40 PM CDT

Ryan had his dr appt last week, all looks great. He doesn't have to go back for another appt until July. He lost his first tooth Wed and is thrilled! He really wanted to keep his tooth so he wrote the toothe fairy a letter:
Dear tooth fairy please don't take my tooth but please leave me some money, message by Ryan" He is always making me laugh. He asked me the other day if I knew how water was made, before i could answer he said only God knows.
Then he told me we still needed to send balloons up to Ashley and I told him we would do that soon. He told me he wanted to get a balloon so he could write Ashley a note asking her how water was made. I told him that would be pretty cool and I asked him how she would answer, I said would she talk to you in your dreams? He looked at my like that was the stupist thing I could have said, he told me...
"MOM! She would send the balloon back down to me with the answer! You never know I guess!

We are doing altright, the days are still veryu hard, seem to get harder as everyday passes. Those of you that see us everyday probably think we are doing pretty good, but the truth is we just put on a good face for our kids, most of the time we are falling apart inside, we miss her SO much.
Two very good friends of ours who had transplants almost the same time as Ashley could really use some prayers, Paul and Zach, two very tough 10 year olds, tougher than they should ever have to be are fighting hard to get over infections and complications, please say a pray for them.
Thank you,
Robin

Thursday, April 24, 2008 3:34 PM CDT

Kelsey turned the BIG 13 yesterday! Happy Birthday kiddo!

We are doing ok, April 26 marks 1 year since Ashley relapsed, its hard to believe everything that has taken place this last year. We would have never imagined we'd be sitting here today with out her, we really thought transplant would be her cure, we miss her so much.

Ryan is doing well, he is really enjoying all the kids in the neighborhood, the block is filled with little boys his age! He is slowly coming out of his shell, like us he is just not used to being with other people, but he is doing wonderful.

Jennifer is doing great, we are so proud of her!

Thanks for thinking of us,
Robin

Friday, April 11, 2008 9:05 AM CDT

Wednesday April 16th
Ryan's appt on Monday went well. His is doing great. He will be 21 months OT on April 28th! Thank you for checking in :)
Robin


***********************************

Its been awhile again, aorry for that...

Today marks 8 years, 8 years ago today Ashley was just 3 1/2 years old when we found out she had leukemia, 90 percent cure rate we were told, for some kids yes, unfortunatly not for our Ashley. I can remeber that day like it happened an hour ago, to what I was wearing to the Dr's expression on her face when she told us. I won't get into that though, its just too painful. We are thankful we had her for the 11 years we did, but of coarse we had wished it would have been much longer, We miss her deeply, and always will.

Ryan has his apt on Monday, he will be 21 months off treatment on the 28th of this month. On the 26th on this month is when Ashley relapsed for the second time, its hard to beleive that a year ago today she was still going to school, still doing girl scouts, sleepovers, all the things she missed out on for so long, we are so happy she had those 14 months to live a somewhat normal kid life. April has always been a hard month, too many memories. We will be glad to get Ryan's apt over with.

All in all I guess we are doing ok, trying to keep busy, looking forward to summer, we hope to make our trip during summer break.

Thank you again for being there for our family,
Robin and Mark

Friday, March 7, 2008 4:26 PM CST

Ryan is over the flu and doing just fine, he was able to get over this illness all on his own. I didn't even call clinic ,as much as I wanted to bring him in to have his counts checked, we held back and waited, after 4 days of high temps he recovered all on his own. He is getting closer and closer to two years off treatment, (July 28th).

Other than Ryan, Jennifer was the only one that had the temps too, Mark was sick but no fevers, Kelsey and I never got it at all.

Not too much is getting on this weekend, just hanging low, renting movies and such.

We miss Ashley every second of every hour of every day, everything reminds us of her, her memories still make us laugh and smile. Tomorrow will be three months since she went to heaven, it really doesn't get any easier. We go through the days trying hard to be "normal" and functioning. Mark and I still drag ourselves to the YMCA. We need to keep busy , sitting idol is just to hard, too much time to think. We do get the chance to go out on the weekend, to dinner , comedy club,...Ashley is never out of our thoughts. We miss her so...

Thank you for checking up on us,
Robin

Friday, February 29, 2008 12:56 AM CST

Ryan is still running a temp 101 , but I guess that goes along with having the flu. This morning we were watching TV (he slept on the couch with me last night so I could take temps, well he dedcided 6:30 this morning was a good time to get up..)anyway, we are watching tv and a commercial comes on for "Chuckie Cheese" he say to me, very seriously and all, Mom, instead of signing "where a kid can be a kid" they sould say, "where a kid can go and get sick, then he says Don't they no how many germs are in that place?! He has never been to chuckie cheese, I don't think i could push him through the door if i wanted too, Where did childhood go??? He's a man in a little boy's body...


Hello,
Things are going along here....

Jennifer had the flu last week, Ryan now has it, high temp and everything else that comes along with it. We are always affraid of viruses "triggering" something inside of him. He is 19 months off treatment today, much further along than Ashley ever made it, other than this illness he has done pretty well. His next apt is March 31.

Its been hard to get back into the swings of things here, we miss Ashley so much every second of every day, it seems so unreal at times and very real other times. I apologise for not getting thank you notes out right away, I am working on them, its so hard to sit down and write them out,but its important to us that I do, I want you all to know how much we appreciate all your love and kindness.

So life has been what you would call "normal" I guess. Thank you for continuing to come here to check on us. Some one in the guestbook asked for Ryan's caringbridge site, he has one http://www.caringbridge.org/wi/ryan but I rarly go there to update, I just got into the habit of using Ashley's page for both of them. I'll try to get some new pictures up soon.

Thank you,
Robin

Wednesday, February 6, 2008 11:12 AM CST

Ryan had his Dr apt on Monday, he is 18 months OT (off treatment) and doing great, he doesn't have to go back in until March 31, although we can bring him in ealier if we panic :)

We are doing ok, still many down days, but doing alright.

Jennifer turned 15 on the 31st, we sure missed having Ashley with us, but we did enjoy ourselves by going out to dinner and having a small family party at home.

Kelsey starts volleyball at the ymca soon, and Ryan is busy just being Ryan.

I'll try to update more often, thank you to all of you who still check in on us...

Robin

Tuesday, January 22, 2008 8:18 AM CST

Its been awhile hasn't it?

We are doing ok, the days don't get any easier, but we muddle through them, highs and lows. It just doesn't seem real at times, how is someone there one day and not the next? How do you all of a sudden have 3 kids to take care of and not four? Can you imagine waking up one morning and not having one of your children sitting at the breakfast table? Can you imagine them just not being there? Its such and empty feeling, wanting to go pick them up, wanting to go get them but you know you can't. Its just so different, the kids are doing pretty good, Ryan and Ashely were so close I just wonder how much this is really bothering him, when she was home they were always together, playing in his closet, running around the house, fighting, hugging and fighting again, boy she loved to get a rise out of him!
Ashley was such an amazing child, stuborn as heck, loving as ever, we are just so proud of her, she always knew what she wanted and did whatever she had to have it done her way. So we are hanging in there, miss her terribly, but hanging in there.

Ryan is fighting another cough/cold, but no fevers, he has Mark and I always on our toes, but he's doing just fine, his next apt. is Feb.4th.

Thank you again for checking in on us,

Nancy, I'm thinking of you guys and praying for Matthew TBI to go smoothly and quickly...

Robin

Monday, January 7, 2008 10:24 AM CST

Not too much new here, a lot of ups and downs.

Ryan is doing great, we took him to his Dr apt early, on the 3rd, because he had been complaining about a few things for awhile, his counts are great, he hasn't complained of any pain since, always works that way doesn't it? His next apt is Feb 4th.

Thank you for all your support and love,
Robin

Tuesday, January 1, 2008 11:44 AM CST

We toasted to a "New, New Year" Right now Happy New year just not fit, not sure it ever will, it will be "new" as we try to figure out our new life. We are doing ok, kids go back to school tomorrow so we will be left with a lot of time on our hands, time to get some things done that have been just left for so long, small every day things that we just never had the time or energy to do.

I read this on another childs web site awhile ago...

"The best way to moarn a child lost is to love the children that are still here"

I hope that all of you have a very Healthy New Year,

Robin and Mark

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