History

Thursday, May 11, 2006 9:35 AM CDT

this is just my feelings, thoughts as a mom.....
Wishes
If I could have a lifetime wish
A dream that would come true
I pray to God will all my heart
for yesterday and you
A thousand words can't bring you back
I know because I've tried
And neither will a million tears
I know because I've cried
You left behind my broken heart
and happy memories too
I never wanted memories
I only wanted you.
We carry on and get through each day as it comes. I read once that when you become a mother you ,for the first time, see your heart walking outside of your body. I do see that when I look at my kids...they are my heart. Thank you Kyle for every moment we have had and all the times you let me know you are still with me. Thank you Mitch and Michael for everything you are...you are compassionate, funny, smart, spunky,wonderful young men. Thank you Bry, Aimee and Trish, Mike for your kindness and unconditional love. I am so proud of all your achievements...you are such special people. Thank you Mason for the smooches, hugs and giggles....I love being your grandma.
For All Mothers
This is for all the mothers who froze their buns off on metal bleachers at soccer games instead of watching from cars, so that when their kids asked, "Did you see my goal?" They could say, "Of course, I wouldn't have missed it for the world," and mean it.This is for all the mothers who have sat up all night with sick children in their arms, wiping up barf laced with Oscar Meyer wieners and cherry Kool-Aid saying, "It's OK honey, Mommy's here."This is for all the mothers of Kosovo who fled in the night and can't find their children. This is for the mothers who gave birth to babies they'll never see and for the mothers who took those babies and gave them homes.For all the mothers who run carpools and make cookies and sew Halloween costumes and for all the mothers who don't.What makes a good mother anyway? Is it patience? Compassion? Broad hips? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time? Or is it heart? Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The tears you choke back and lump in your throat that comes when you take your child to the first day of highschool or move them into their college dorm? The overwhelming fullness in your chest when your child hands you your grandchild? The jolt that takes you from sleeping to dread, from bed to crib at 2 a.m. to put your hand on the back of a sleeping baby?Is it the need to flee from wherever you are and hug your child when you hear news of a school shooting, a fire, a car accident, a baby dying?I think so.So this is for all the mothers who sat down with their children and explained all about making babies. And for all the mothers who wanted to but just couldn't.This is for reading "Goodnight, Moon" twice a night for a year. And then reading it again, "Just one more time".This is for all the mothers who mess up. Who yell at their kids in grocery store and swat them in despair and stomp their feet like a tired two year old who wants ice cream before dinner.This is for all the mothers who taught their children to tie their shoelaces before they started to school and for all the mothers who opted for Velcro instead. For all the mothers who bite their lips (sometimes until they bleed) when their 14 year olds dyed their hair green. For all mothers who look at their children and think "I wish I would've" or "I wish I would'nt have". This is for all the mothers who lock themselves in the bathroom when babies keep crying and won't stop.This is for all mothers who show up at work with spit-up in their hair and milkstains on their blouses and diapers in their purse.This is for mothers who teach their sons to cook and their daughters to sink a jump shot.This is for all mothers whose heads turn automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home or are grown.This is for the mothers who have children with special needs for they will dream new dreams. This is for the mothers who are scared but strong everyday because their child has an illness. This is for mothers who put flowers and teddy bears on their children's graves.This is for all the mothers whose children have gone astray and who can't find words to reach them.This is for all the mothers who sent their child to school with a stomach ache, assuring that they would be just FINE once they got there, only to get a call from the school nurse an hour later asking them to please pick them up right away.This is for young mothers stumbling through diaper changes and sleep deprivation. And mature mothers learning to let go.For working moms and stay-at-home moms. Single mothers and married mothers.Mothers with money and mothers without.This is for you, so hang in there. The world would be a terrible place without the love of mothers everywhere. You make it a more civil, caring and safe place for the precious children in our world.

Monday, February 28, 2005 6:52 PM CST

In the Spring after Kyle joined the Spirit World I had gone back to work and was asked to attend a training in Phoenix. I was dreading the trip for so many reasons...mostly because my last trip was to take Kyle on his Make-A-Wish journey and the thought of getting on a plane again was unbearable. I knew that I had to face it so I decided to follow through with the trip. I boarded the plane that day and tried to hold back tears..which wasn't any different than any other day really. I was sitting in my seat as the passengers boarded and then my worst fear came true. I had a window seat and who do you think was assigned to the seat next to mine...a six year old boy. As my mind swirled and my heart pounded I was overcome with heartache and a longing for my almost six year old but knew I needed to keep that in because this boy and his mom weren't going to want to sit next to a sobbing stranger. I love kids...I always have. I really enjoy people and it became obvious to me as they settled in that losing Kyle had changed me in so many ways. As the boy and mom greeted me I found it difficult to say more than Hello. Rather than initiating conversation as I always had I avoided eye contact and conversation. The boy's mom was persistant though and as she made small talk we began talking about mom things...like getting everyone ready for a trip, packing things to keep them occupied etc. The little boy told me he was in Kindergarten and as I choked back tears I felt that Kyle had sent them to me...in that moment I knew that this situation was meant to be and that I needed to make something positive come from it. So I asked him about school and we talked about things that I missed talking to Kyle about..like Kindergarten, Spiderman and what fun things he liked to do. I felt myself being so eager to share stories about my kids but yet I knew that if I did I may not be able to keep tears back. Finally, his mom asked me the dreaded question...do you have kids? I said yes and after I talked about Mitch, Mike, Bryon and Trish I proceeded to tell her about Kyle. Of course she was saddened and asked the typical questions like "what kind of cancer was it?" and "how do you get through it?" I shared with her that it really depends on the day and that I was glad that she and her children were spending time together. The rest of the plane ride was quiet as I lost myself in a magazine..I knew I couldn't talk anymore. She and her son played games, colored and read books...all the wonderful things I kept wishing I could do with Kyle. As the plane decended into Pheonix we commented on how glad we were to have arrived. I quickly exited the plane so that I would not have to see them interact anymore...it was too hard. I stopped at a little shop to buy a gift for the boys when I felt a tap on my shoulder. I turned around and there she was with tears in her eyes. Her son was running down the aisle and I chuckled and said "that's exactly what Kyle would be doing". She just looked at me with an inspired yet sad expression and I could tell that she couldn't find words. So I just said "please enjoy him" and she looked at him as he ran ahead, looked back at me and said "I will."
This experience has stayed with me because I know that when we think we are in our darkest moment, our weakest place, we can still brighten someone's day with a rekindled inspiration to really appreciate people,especially our loved ones, life itself,and we can give our strongest message eventhough we may not know what the message is..it is open to the interpretation of those people we interact with and they pass it on to others.
I felt I needed to share this story today...it makes me feel closer to Kyle....I love you Kyle and miss you so much....
best wishes to all of you and to the loving mother and energetic son from Phoenix.

Saturday, December 18, 2004 10:22 PM CST

Kyle-myle, Bubba-Joe
A year has gone by...but I don't know when it slipped past us. Days and nights are restless as we try to learn how to live life without you here and we try to give our best to eachother. I want to find the words but I can't. I know you are always with us..we can feel your presence.
For today all I can say is that I am blessed to have such wonderful kids and I would give anything to have you here with us...hugs and kisses.
We miss you so much.

Wednesday, August 11, 2004 8:05 PM CDT

Missing You

No words I write can ever say,
How much I miss you everyday.
As time goes by the loneliness grows,
How I miss you...nobody knows.
I think of you in silence,
I often speak your name.
But all I have are memories,
And a photo in frame.
No one see's me weep.
But the love I have for you,
Is in my heart and mine to keep.
I never stop thinking of you,
I don't think I ever will.
Deep inside my heart,
You are with me still.
Heartaches this world are many,
But mine is worse than any.
My heart still aches as I whisper low,
"I need you....and miss you so."
The things we feel so deeply,
Are often the hardest things to say.
But I just can't keep quite anymore,
So I'll tell you anyway.
There is a place in my heart,
That no one can fill.
I love you...and I always will.

Author Unknown

Sunday, March 21, 2004 4:16 PM CST

So many times I have thought of coming to this page ..but it is so hard. So first I want to thank all of you who have kept us in your thoughts and prayers. Seeing the entries here is so wonderful. We are doing this day by day and those days get harder. The boys are so strong..but they are feeling this more and we work through it. I truly believe in the gift of numbness but when that wears off the pain is deep and the feelings so intense...it can feel like a ride sometimes. It is as if we have been thrown into another world..and many things have happened without our permission. It is hard to believe that he isn't here...I don't think that has truly sunk in for any of us. We are just at the beginning of this journey..grief is a long road...and life without our Kyle is forever. Every day we live, laugh with eachother and love more than ever because we know that Kyle would want that.

Ask my Mom how she is
My Mom, she tells alot of lies
she never did before.
From now until she dies,
she'll tell a whole lot more.
Ask my Mom how she is
and because she can't explain,
She will tell a little lie
because she can't describe the pain.
Ask my Mom how is she,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how is she,
she seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how is she
she'll lie and say she's fine.
I am here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom
with all the lies you told!"

Author Unknown

Our prayers go out to all those who are grieving. Our prayers also for all of the families battling horrible diseases like cancer.

Wednesday, January 7, 2004 2:26 PM CST

We appreciate all the notes in the guestbook..the boys look forward to seeing them each day. Eventhough we check the site it sometimes takes a few days to write a note.
We celebrated Kyle's birthday by visiting the grave with balloons and birthday songs. I made the cake he wanted and it looked as crazy as I thought it would when he told me what he wanted. It was a white cake with pink frosting decorated with blues clues, power rangers, and hockey sticks. And in my heart I know Kyle helped me make his cake that day.
There are constant reminders of Kyle in everything we do, think, feel, and dream; every moment of every day. When your child has Cancer you grieve through the whole process because of so many changes and losses in your "normal, secure" life and you know that there is a possibility of losing your child. At the same time you are full of hope and believe in the possibility of your child being cured and that is the driving force that gets you through. We never could have imagined nor did we want to imagine life without him and the reality is unfolding with each new day. It seems to be getting harder, the tears that wouldn't or couldn't come are constantly brewing. We talk a lot about things we did with Kyle and laugh at the funny stories... and we are so grateful for those things but our sadness in missing him is always there, very strong.
Mitch and Mike are so strong. They are always bringing Kyle up and reminiscing...I can tell it helps them get through this.
Today Mitch turns 13..yes we are entering a new phase in life.. parenting a teenager. I look at him and can't believe how big he is and how fast time flies. I am a lucky mom...my boys are great.
Please continue to pray for those doing everything they can to hold on to their children and for those who have had to let go.

Friday, January 2, 2004 9:14 AM CST

Six years ago today Kyle Edward Lunder arrived at 2:09 a.m.
No words can describe the pain I feel not having him here. He wanted to help make his cake. I want to see his happy face when he looks all the decorations and I want to hear him excitedly talk about all the things we might do.
We will do our best to honor this day and to celebrate Kyle.

Monday, December 29, 2003 12:13 AM CST

I have struggled with an update..the range of emotions is overwhelming at times. So many emotions have been untouched due to the shock of all of this and the need to help my other boys through their pain.
Soon I will share more with all of you but today I want to say that I am proud to be Kyle's mom. So many people talked of Kyle losing his battle and I won't accept that. In my eyes and heart,I believe he won his battle with Cancer.
He may not have been cured and here with us today but during his 5 short years he impacted people's lives..people he never knew. People have come to me, written me, phoned me to tell me the ways in which Kyle's jouney has impacted them.
Some have renewed their faith in God and returned to church; some have been more patient and appreciative parents;some have realized that they can make a difference and volunteer their time to less fortunate people;some look at the world and what they have in a more positive way;some have learned to laugh in the midst of their pain;some have realized that they aren't alone;some learned to not judge a person by their appearance. I could go on.
Throughout his battle with Cancer Kyle never gave up, never failed to live life to the fullest,never wanted anyone's pity. How could I walk with him through all that he experienced and ever say that he lost the battle....impossible.
Our family was embraced and supported by so many people and I want to thank everyone. Your care and concern has been a blessing.
Please say a prayer for our special friend Max who joined Kyle this weekend. We hold him and his family close to our hearts. His site is www.caringbridge.org/mn/madams.
Please pray for Noah and his family...Noah was there to greet Kyle and Max and we pray for his family in these trying times without him. His site is www.caringbridge.org/mn/noahjay.
We continue to pray for Matthew who relapsed..we pray for the cure and for his family's strength to hang in there. We continue to pray for Duncan who is in remission...we know you'll do it buddy.

Saturday, December 20, 2003 10:04 AM CST

Thank you all for your kind words and prayers.
I wanted to let you know the arrangements for Kyle's services...
Kyle's wake will be held on Sunday from 3:00 p.m. to 9:00 p.m. at Bruzek's Funeral Home in New Prague.
Those who can't come on Sunday can go to Bruzek's on Monday morning between 7:30 a.m. until 9:00 a.m.
Kyle's funeral will be on Monday at 10:00 a.m. at Holy Trinity Lutheran Church which is also in New Prague.

Thursday, December 18, 2003 9:05 PM CST

Kyle left our lives today..as beautifully as he came in.

Wednesday, December 17, 2003 1:45 PM CST

I apologize for the gap in updates...as you can imagine there is so much to do and think about..most importantly love and hold Kyle, Mitch and Mike.
Kyle gave us a scare yesterday morning ..a couple times he stopped breathing and his feet and fingers were turning blue. We increased his oxygen and his color came back and his breathing became more regular. His lungs have actually been less conjested which is a blessing. Kyle also developed a high fever (103)..we were able to bring that down relatively quick. His body's ability to cool itself may be impaired by the tumor.
We are grateful to have made it to another day. However, Kyle's kidneys are starting to shut down and he remains unresponsive. For those of you who know Kyle or have read what I've written about him know that he LOVES to talk and crack jokes. He is always on the go. Now we aren't even getting gestures in response. It doesn't stop us from constantly telling him we love him, reading books,and listening to music. I just wish I knew what he was feeling and thinking...I wish a lot of things.
We have never experienced or even imagined heartbreak such as this... yet we have also had some beautiful, precious experiences. Yesterday Kyle spent the day being held and kissed by parents, brothers, grandparents, aunts, uncles.
They are telling us we have a day or two but it wouldn't be the first time for Kyle to defy the odds!
We continue to pray for a miracle. Thanks to everyone who is sharing our journey..we read the guestbook many times a day. It is a great support.

Tuesday, December 16, 2003 11:10 AM CST

There are no exact words to tell you all what this is like because everything fits. Our journey is at a place where we hoped and prayed we would not go. We took Kyle off fluids Sunday because it was obvious he had fluids in his lungs. His breathing became very disrupted and he struggled. It is the hardest decision..like so many of these are. His days are quiet..he sleeps all the time. The nights have been difficult because his pain becomes stronger. Giving him extra doses of the meds helps and the docs have been doubling the doses each day to keep him comfortable.
So for now we are rocking, reading stories and loving.

Friday, December 12, 2003 4:02 PM CST

We are praying so hard for the miracle that will rid Kyle of cancer so that we can have our spunky little guy who fearlessly grabs on to every life experience. He always approaches the easy and challenging things with courage and a smile. He doesn't even realize how much he gives us..we are so blessed.
We left the hospital Wednesday night and have had nurses stop in each day. For the most part he sleeps a lot. He really isn't eating very much..he hasn't kept much down either. We are giving him fluids at night to make sure he is getting something in. It is so hard to not have him running around and playing. Most of all I wish he would talk to me...Kyle loves to talk and he does it constantly. I miss his stories, questions, teasing...this is so hard. While he is awake he talks a little so I just keep praying for more.
He went to school on Thursday and celebrated his birthday with his class. We sat in a circle and decorated cupcakes, sang Happy Birthday and played. After an hour and a half he was exhausted and it was time to go. We also celebrated Christmas with all of our families. Kyle perked up to open gifts and ate a little. Santa came to see Kyle, Mitch and Mike escorted by a Scott County Sheriff..they pulled in with lights flashing and sirens going. The kids absolutely loved it and Kyle really enjoyed him..he stayed and called each child (and adult)up to sit on his lap and open their gifts. So far today Kyle has only been up for about an hour and a half. I've been reading to him because I know he can hear me. I also massaged his warm little feet and I could feel his whole body relaxing.
There are so many people who have reached out to our family by sending food, gifts and support.. I want you to know that your kindness and generosity have truly lifted us up.
Please continue to pray for a cure for Kyle and the other children in our extended cancer family.

Tuesday, December 9, 2003 11:32 AM CST

It has been a bittersweet week since we left...we are back in Minnesota at Children's. Kyle was too ill to finish the trip. He is now on a continous IV drip for nausea and pain and THANK GOD he is resting and feeling better.
He left Thursday morning and he slept in the limo to the airport and on the plane. We thought maybe things would turn around but he truly stuggled with vomiting and headaches. I spent a lot of time on the phone with his Doc trying to figure out how to keep meds down and trying to figure out the levels we needed to get things under control. It worked for periods of time but finally on Sunday we said it's time to go. It was obvious that Kyle's wish had changed from going to Disney to being at home.
When we were at the parks he slept in the stroller and cried that he didn't want to do anything.
He did go to Magic Kindom and the times he perked up were to drive little race cars and to meet Mickey mouse. He was so funny..it was like the Kyle we know came back to tease Mickey..he squeezed his nose a bunch of times and was really silly. After that he wanted nothing to do with the trip. I stayed home with him Sunday while the boys, Chad and Manda went to Universal. They stayed there for a few hours and then we decided that we should all go to the ocean. He didn't like that either but we did get pictures.
Mitch and Mike were jumping into the waves and collecting shells. Mitch had never been to the ocean so he was loving it. I am grateful that we were able to go on the trip despite the difficulty of it.
Last night Kyle chattered away and it was so wonderful because that is him. I know that he just wanted to be home.
I think the boys were able to have some fun and we all experienced some wonderful moments.
We are staying until Wednesday morning and then we will be going home with hospice care. We know that any additional chemo will not improve things and we want quality time with Kyle. Our hearts are breaking as we try to do this one moment at a time because one day at a time seems like a lot.
I just want to say that we have felt so supported by all your prayers and messages. Please continue to pray that Kyle is able to be pain free and of course for a miracle.
Thanks, Heidi

Monday, December 1, 2003 5:29 PM CST

Greetings....
This is one of those days where I am having difficulty knowing what to say..I've typed a starting sentence probably ten times. It's hard to try to capture our lives in journal form because there is so much so I hope this will all make sense when I'm done.
We have truly been enjoying each day and Kyle is so tough. Last week was a short school week so we had a blast having all the boys home. Kyle went to school Monday and on Wednesday he had his classmate Mitchie over for the day. They had a blast sledding and building snowmen. It soon turned into a snowball fight which was fun for the big kids too :)
As of last week we could see that the tumor had increased in size and he started experiencing headaches so we just decided to start giving him pain medication to ward them off. That worked for Kyle. A little bit of nausea was also occuring and at that point we knew it was probably due to some pressure starting. After talking with the docs we decided to try his anti-nausea med and that stopped it.
Thanksgiving morning was a little iffy because Kyle started feeling an upset tummy..he actually ended up getting sick but with his anti-nausea medicine he soon rallied out of it. He ate mashed potatoes and corn and of course...pickles.
He played with all the kids which was good for him but he also rested quite a bit.
By Sunday it was obvious that he is needing more pain meds and nausea medcation so we know the pressure is increasing. As always things change on a daily basis so because of that I asked his doc to do some scans so that we can find out what is really going on..before we head to Florida. We really need to have a solid pain management plan so that Kyle can enjoy himself. So the scans are set for Tuesday and we will work with the docs to explore all the medication options.
I also moved the trip to Disney World up a couple days so that Kyle can be at his best. The kids are so excited and Carol the Make-A-Wish coordinator is so wonderful. Setting up these wishes is so much work... when I called her today to ask if they could get us there sooner she jumped right on it. Within 20 minutes she was calling me back with new arrangements...they are truly amazing and we are so grateful. We will definitely have pictures to share when we get back.
We love the messages and your continued prayers...

Tuesday, November 25, 2003 8:35 AM CST

As I've said in the past, no matter what is thrown at Kyle he always rises to the call.
Once again, he is being tested....the tumor is back. There are no words to describe this...just every emotion that you can feel, sometimes all at once.
A few days before his treatment (6 weeks ago) Kyle and I were sitting on the floor playing and I smelt a scary, familiar scent. It was the same scent that came from the tumor site when he was first diagnosed. About a week before Kyle's relapse last December I smelt it but thought maybe I was just imagining it and the scans were fine. This time I told the doctor I smell it and I want to do scans and she agreed...again they were fine. As you know Kyle was supposed to go in for a treatment on November 10th. Due to counts being a bit low, it was set for November 17th. I actually couldn't wait to start the chemo because I wasn't feeling right about things. Kyle seemed different..his energy level wasn't there. And as in the past my gut was wrenched...telling me something is wrong. On Sunday I was bathing him and when I began cleaning his right ear, it bled. I knew then that the tumor was back..this is the same way it always shows itself. His doctor said probably an infection so we can look tomorrow. I wasn't okay with that so we brought him in to Children's that day and the ER doctors said he can go home, schedule an appointment with the U of M surgeon tomorrow. They thought maybe a stitch let loose (ya right). So we went to Mitch's hockey game and at the game Kyle said "mom, what is this lump under my ear?" I immediately called his doctor and she said possible lymph node inflamation due to possible infection so come in as planned tomorrow. At this point in treatment eventhough they try not to alarm you, you know it isn't good. Anyway they were able to get some of the tumor out of his ear and said yes it's back.
His oncologist stated that there are some experimental chemo meds but that's all we can try. It is so devastating after all this boy has been through and we had really hoped that the surgery was the key factor. It is possible that the cancer cells were hiding in the skin and who knows where else.
After a couple days to try and take this in we decided to try the experimental chemo. It involves a daily trip to the hospital for a treatment but he can go home every night. He will go 5 days straight, have the weekend off, and go 5 more days. Then wait four weeks in between for counts to recover. Hopefully he will only stay in for fevers. If Kyle is not tolerating it or it doesn't shrink the tumor we can stop. He starts treatment on December 15th as long as he continues to hold his own. If there is any sign of difficulty in function or if he develops pain, we will begin immediately.
Kyle will be taking his Make-A-Wish trip to Disney World on December 6th. All the boys are so excited.
We are praying for the miracle that we know will happen for Kyle...he is so full of life and has so many plans.
Thank you for your prayers. We would like you to remember our friend Noah in your prayers. He left this earth on Saturday after a courageous battle with AML.

Thursday, October 30, 2003 10:16 AM CST

I am happy to say that Kyle has been a busy boy this week. He has three full days of school this week. On Tuesday he went to visit some of his buddies from preschool. He had a blast. Kyle stayed long enough to have lunch because he loves the lunches that Bev, their cook, makes.
We have been counting the days to Halloween and today Kyle is going to pick out the treat to share at his school party. He also wants to give everyone a stuffed animal :)
He decided that he wants to be a fire fighter again this year. He had picked out a treat bag to use for trick or treating but today he informed me that he needs to use a grocery bag because the other one just isn't big enough for all the candy he wants to get.
The next treatment is October 11th for 5 days. Thank you for your prayers...we get so much strength from it.
Have a happy and safe Halloween.

Thursday, October 30, 2003 10:16 AM CST

Tuesday, October 21, 2003 10:52 AM CDT

It is so great to be back at home. Kyle went home on a few IV meds and as of yesterday he is now off of those. His counts are sky high and he's feeling much better. He is catching up on sleep and eating....he didn't eat much while we were in but that has improved.
Today Kyle is in school and very happy about that. He asked me to drop him off in front of the school so that he could walk in(just like his big brothers).
I am starting to find hair on the collar of his clothes and in his baseball cap so we are headed back to the smooth look. A couple weeks ago when Kyle realized he had enough hair to comb he was in front of the bathroom mirror wetting it down and slicking it back...watching him do that made me chuckle and brought a tear at the same time.
We have three more rounds of chemo to get through...it is a bittersweet feeling to be this close to the end. This boy has been through an incredible amount but I see it only making him stronger so we continue one day at a time.
Thanks to everyone for checking in and for continued prayers.

Wednesday, October 15, 2003 6:59 PM CDT

Sometimes it is so hard to get time away to give updates...so thanks for being patient with me. The good news is hopefully by the time you are reading this we will be on our way out of here. Kyle was in the clinic on Thursday and Friday of last week...Thursday was routine and we found out counts were low (par for the course). Then on Friday he had a low grade fever so we came in and Doc O'Leary thought we could just treat him at home with the antibiotics and anti-fungals. So we went home happy that we weren't staying but thinking we would end up coming back soon. By Sunday afternoon Kyle was running a higher fever and feeling really crummy. We ended up coming in Sunday night. Thankfully all the blood cultures have been negative for infection and the best news is no fungal infection!!
The first couple days Kyle rested a lot...he had high fevers and headaches.
Every day he looks better and is willing to do more...like yesterday there was a mini carnival on 2nd floor with two Minnesota Wild hockey players there to sign stuff and take pictures. Kyle is the biggest hockey fan..but he really wasn't interested in meeting them or taking pictures. He wanted to shoot pucks into the nets that they set up..gotta love that :)
Because of MEA, the Childlife department is sponsoring
Camp Get-A-Wella for the kids (and siblings that are here)the rest of the week. Every day they have fun activites...so today Kyle sang and danced with the Teddy Bear Band, made an art project out of leaves and pine cones. He also made tye-dye t-shirts for himself and his brothers..he can't wait to surprise them.
He hasn't had a fever all day today so as long as he stays fever free and counts continue to rise we can leave tomorrow.
Thanks to all...take care.

Friday, October 3, 2003 7:11 PM CDT

This will be short and sweet...Kyle doesn't like me to leave the floor or even the room for too long so I can't update too often.
The surgery went great and the new port seems to be working fine. He started chemo Wed. night and is feeling the effects...he isn't too active and not eating much. The anti-nausea meds are working great....as you can imagine it is heartbreaking when he gets sick during treatments. I am happy to report it is going smoothly and despite where we are and what we're doing, we are having fun.
He finishes Saturday night around 9:30pm but Kyle and I decided we don't care how late it is...we are bustin' outta here :)
Thanks so much for the prayers and messages in the guestbook....a special thanks to Kyle's class for all those great messages...he was absolutely tickled and I am so touched.

Friday, October 3, 2003 7:11 PM CDT

This will be short and sweet...Kyle doesn't like me to leave the floor or even the room for too long the room so I can't update too often.
The surgery went great and the new port seems to be working fine. He started chemo Wed. night and is feeling the effects...he isn't too active and not eating much. The anti-nausea meds are working great....as you can imagine it is heartbreaking when he gets sick during treatments. I am happy to report it is going smoothly and despite where we are and what we're doing, we are having fun.
He finishes Saturday night around 9:30pm but Kyle and I decided we don't care how late it is...we are bustin' outta here :)
Thanks so much for the prayers and messages in the guestbook....a special thanks to Kyle's class for all those great messages...he was absolutely tickled and I am so touched.

Friday, October 3, 2003 6:43 PM CDT

Friday, October 3, 2003 5:42 PM CDT

This will be short and sweet....Kyle doesn't like me to leave the floor so I can't update too often.
The surgery went fine and the new port works great. He started chemo Wed night and is feeling the effects..for the most part his spirits are great but he really isn't too active or hungry. The anti-nausea meds are working great(they use steroids) but they also make him(and most kids up here) pretty cranky. But I'd much rather have that than to have him get sick and be more miserable. We will finish treatments Saturday night at 9pm but Kyle and I decided we don't care how late it is...we're bustin' outta here :)
Thanks so so much to everyone who left messages in the guestbook...Kyle loves it. A special thanks to everyone in Kyle's class for sending a message...it is so awesome...Kyle was really tickled about that!
Thanks for the prayers......

Monday, September 29, 2003 7:11 PM CDT

We had a very hard day today and we are not in for chemo. Kyle's port(a device under the skin on his chest that IV meds are administered through) wasn't working . This port was put in when he relapsed(he had one removed after his first year of treatments were done)and it hasn't been working well....there have been many times when they try to get the needle in and they can't get blood to come out for tests or meds won't go in. So he was very brave and the nurse tried from 8:30 this morning until 11:30 to get it to work. He got poked two times which was upseting and exhausting for him. His Doc came in and said we might want to consider a new port...I agreed because the purpose of a port in the first place is minimize the number of pokes...this port is actually making things more traumatic for Kyle because we never know when it will work or not. He just shouldn't have to put up with that....so now we have another surgery. Kylw will have the surgery Wednesday and start chemo the same day. He had a pre-op MRI of his chest today so that the doc's can make sure all of his blood vessels are open and we are ready for surgery. Everything looked fine...please pray that this is the answer and the LAST SURGERY! We just keep having to jump through hoops....this is tough...but I know we're tougher.

God has not promised skies always blue,
flower-strewn pathways all our lives through;
God has not promised sun without rain,
joy without sorrow,
peace without pain.

But God has promised
strength for the day,
rest for the labor,
light for the way,
Grace for the trials,
help from above,
unfailing sympathy,
undying love.

Tuesday, September 23, 2003 3:17 PM CDT

Kyle is having such a wonderful month...he is in school today and loving it. When I dropped him off this morning his concern was whether or not to have hot lunch. It just made me thank God that he has had the chance to go to school and that it hasn't been over-shadowed by his treatments. Thank you all for your prayers because there are blessings every day.
Kyle went in last week for routine tests of his heart and kidneys and everything looks great. Kyle has been eating so much...he has gained more weight and is feeling stronger.
We go back in on Monday for our next round of chemo. Please pray that Kyle is protected from another fungal infection. His Doc said that if there is any sign of trouble related to an infection, we are done with chemo.
When you have a child with Cancer you look at the little things in a new way..you see simple things as blessings because a scary disease such as this makes you realize how precious a gift life is...how precious our kids are. As I have said before we have become close to other families whose children fight the same battle and when those children are struggling it is so hard. There is a boy, Noah, who has been fighting hard to get into remission so that he can get a bone marrow transplant at the U of M. His family was just told that they will have to stop treatment because it isn't bringing him into remission. They truly need a miracle so I am asking that you remember him and his family in your prayers.
We also ask that you pray for David, Sopheap, and baby David.

Friday, September 12, 2003 2:06 PM CDT

Kyle is loving his break from the hospital and chemo. He has been going to school every other day all day and he absolutely loves it. I put him on the bus with Mike and then drive over to the school to watch him line up with his class and make sure the bus ride went okay. Kyle always ends up walking past the group(he says he doesn't see them) and heads to the classroom on his own. The first time he did that the teacher and I missed seeing him walk by in the sea of children that come bursting through the door. So my heart was in my throat as his teacher had the receptionist call the bus driver. We thought maybe he got off with Mike by mistake. But just as I began to feel my heart thumping Kyle comes walking back from his classroom...whew.
He says he wants to go to school every day but he wants one day for a break. Yesterday he and a classmate were picked to be "student teacher" for the day..how cool is that.
We get to enjoy this break for two more weeks and then we start chemo again. So for now we just have our weekly clinic visit and meds at home.
Kyle is gaining weight and he has just a little bit of hair. It feels wierd to rub his little head and feel hair there...I'm so used to that smooth skin :)
It is awesome to see him play hard and feel great...
that's all for now

Tuesday, September 2, 2003 10:33 PM CDT

The first day of Kindergarten finally arrived! Today was just an hour for orientation but we got to read a story, do an art project together and tour the "hot spots" at school..like the media center and lunchroom etc. He was so excited and funny...he asked me to park in the back of the parking lot so he could walk further to school with his backpack...what a hoot! We had a doctor appt. after and he just beamed when everyone asked him about school..such a big guy. Tomorrow is a full day and he can't wait..especially because he is going to ride the bus to and from school with his brother Mike. It is wonderful to have him feeling so good and enjoying all the things that five year old boys do.
The doc says no chemo for the month of September...now we have to stay on the anti-fungal meds during treatment so that we can try to get through more chemo. We will probably start the next round in the beginning of October. He went in last Tuesday with the chance that they would do a biopsy of tissue in that nasal area but when the surgeon looked around he said there wasn't anything to biopsy...(prayers answered!)
thanks everyone...take care.....

Wednesday, August 20, 2003 3:44 PM CDT

Just when we think we may have smoother sailing we get a curve ball. Poor Kyle has been in this hospital since his admission on Aug 8th. He came in with a fever and low counts which is not unusual after chemo. He also complained a little of his "sniff not working" which meant his nose felt stuffed up. When we still had fevers on Monday the 11th I knew something wasn't right because the antibiotics usually knock the fever down in a couple days. So the thought was that it must be bacterial and we'd just have to wait it out. Then on Thursday the 14th his right nostril began to swell. The thought was that it could still just be a bacterial infection. The doc's doubted that it would be a fungal infection because it is rare for solid tumor patients to get those. As soon as they said "don't worry, it's rare that he would have fungus" I got this icky feeling that that was it. A biopsy was done(they scraped some tissue from inside his nose) and on Sunday they determined that it was fungal and we were in the woods. Kyle didn't have any white cells and he and the fungus were in a war. The first step was to give him this terrible medicine called amphoterycin, which is nick named "shake'n bake. Kyle had this once before in March and it is a nightmare to get through. So he got that on Sunday..they give pre-meds to try to stop the side effects but we had them anyway. First he got the chills so bad he shook and moaned for what seemed like forever. Kyle was shaking so much he couldn't slow his breathing down and needed oxygen. There were nurses hovering around the bed, throwing blankets on us and giving more meds to stop the shaking. The next side effect is a very high fever..his got to 103. something and lasted for awhile. Kyle is such a trooper..the things he has to deal with are so hard. They chose the big guns in terms of meds because fungus in immune supressed kids is deadly..fungus can quickly take over tissue and invade the brain. They did a bone marrow test to see if there were any "baby" white cells coming and there were none.The ENT doc's decided that the only way to buy Kyle time was to operate and remove the affected tissue and a little bone from his nose. They did that on Monday afternoon. Thank God...they got all of it and didn't have to make any visible incisions on his face. During that procedure he also had another line put in his arm so that they will be able to give him all the meds he needs. Today his counts are up and he hasn't had a fever for a couple days so it looks like we are out of the woods. He will be getting anti-fungal meds for awhile and we aren't sure how long we will be here.
The dilemma now..the scary question is can we continue chemo. The fact is though it is rare that he got a fungal infection, if we wipe out his immune sytem again it is possible that he could get another one. And we may not be as lucky next time. If his nose hadn't swelled we may not have known it was there. I don't know...I am tearing up as I write this because God knows I want this to be over for Kyle but we still have 4 more months of chemo to go and I don't know if we got enough in. There could be a possibility of putting him on anti-fungal meds and doing chemo as planned. His oncologist wants time to research and consult with other doc's in order to figure this out. It has been such a trying couple of weeks. Kyle hasn't hardly been out of bed since his admission...so I know this was tough on him. It is heartbreaking to go through this because I want to fix it for him..I want to tell him that enough is enough and the cancer is gone forever. No more pain, icky medicine, surgeries, or hospital stays. We just keep praying...we take each day as it comes..stay positive and with love and laughter we get through.
His doc's say that Kyle probably won't have chemo in September..they have to get the fungal issue totally under control. But.. things change on a daily basis so I will try to keep you updated. Thank you all or the prayers and your concern for Kyle..

Monday, August 11, 2003 9:11 AM CDT

If it is possible to get used to this way of life then hooray for us because we are back into the routine of hospital stays. Kyle had a treatment from July 29th to August 4th. He didn't suffer too many icky side effects. He came back in though on Aug 8th with a fever and low counts. His fever was running pretty high until we ditched the tylenol and gave him a stronger med. Since then his temps have hovered around 100. He is on three broad spectrum antibiotics to cover whatever bug has him in here. Usually it isn't anything that he "catches" from exposure to others but just his own body's illness that rears up with no white cells to fight it off. So now we just wait for counts to come up which could be the rest of the week.
Kyle's oncologist (Dr. O'Leary)is very impressed with Kyle's progress...back in December we weren't given too many options but since then we have increased our odds. She said that she didn't think we would be doing so well. The key to beating this is local control..in other words surgery. The positive things are:
First....Kyle's tumor responded to the recipe of chemo meds that the Dr. put together. It shrunk things down enough so that surgery was possible.
Second...When the surgeons removed all the tumor and affected bone, the margins were clean. This means that the outer edges of tissue surrounding the tumor were cancer free. According the the Doc this is rare with this type of aggressive cancer.
Third...Kyle has routine kidney tests (called GFR) due to the damage chemo does to the organs. Sometimes the level of chemo has to be lowered because the kidneys stop functioning properly. Kyle's test last week showed no sign of trouble in that area which means we can carry on with the same level of chemo.
In addition Kyle also has routine angiograms and EKG's which are always great.
The issue that will need attention is Kyle's hearing. One of the side effects of his chemo is hearing damage. On his hearing side(the left) he showed more loss last week. He is at 3000 hz which is the minimum for picking up all the sounds. So if he dips below he will miss things like the plurals to words..if we say hats he'll hear hat and so on. He will experience more loss due to the amount of chemo he has ahead of him but he won't totally lose his hearing. When we get to that point he will need a hearing aid. At this point when he starts school he will have special accomodations in the classroom and frequent hearing tests so that we don't miss any changes. With his regimine of chemo he probably won't be able to attend very much the first half of the year but at least he will have services in place when he's done with chemo. Believe me we can't wait for that day to come.
I have to say that I am constantly amazed by all my boys. Kyle for his strength to get through things that no child should have to endure. And Mitch and Mike for the sacrifices they make and the positive way in which they deal with all of this.
As I've said before we are not alone. We are here with many children and families who are fighting the same difficult battle. Please include them in your prayers. Please say a special prayer for Priyanka and her family. She is a 6 year old girl who left here to have a bone marrow transplant at the U of M. Her body has not responded well and it has been touch and go for her for weeks.
Thanks to all of you who keep us in your thoughts and prayers...it means so much to us.

Wednesday, July 16, 2003 2:17 PM CDT

Kyle's first round of chemo after surgery went well. It did make him feel sick to his stomach and tired but he toughed it out. You can't imagine the number of oral medications he has to take on a daily basis..plus being hooked up to a pump at home to get antibiotics and TPN(intervenous feedings). We do the TPN when the chemo makes him to sick to eat and it was really needed due to the weight he lost after surgery. The good thing is he did have breaks during the day when he wasn't hooked up and he was able to run around. And when necessary we go down the slide or on the swing with the pump in hand...whatever works.
We went back to the U of M last week for a check-up and his doctors gave him the thumbs up to resume all his normal activities. We were back in the hospital on Monday due to a fever and low counts. When these kids have a fever they test their blood for infection(routine) and this time Kyle had a positive culture which means he has some sort of infection in his blood. Although this is the first time he has had a positive culture, it is fairly easy to treat. They are in the process of identifying what it is so they can determine what antibiotics to prescribe. Counts are still bottomed out but he hasn't had a fever for the last 24 hours so hopefully we will get to go home tomorrow if he stays fever-free. He was due for chemo again next week but that will be pushed back until his counts recover.
Kyle is counting down the 46 days until kindergarten starts...he is so excited. It looks like we have six more months of chemo..depending on how well we stay on track. Low counts delay the scheduled treatments but we at least have some idea of what is ahead.
Thank you for all the prayers....

Tuesday, July 1, 2003 3:19 PM CDT

On Tuesday June 10th, three weeks ago today, Kyle had surgery at the U of M. He was supposed to be in for 4-6 weeks but was released a week and a half after surgery. This boy is so amazing!!! The surgery started at 9am and after a nerve wracking 14 hours, he was done. The surgery was performed by an ENT(ear, nose and throat)surgeon, a neurosurgeon and a reconstructive surgeon. Three very talented and gutsy doctors to whom we owe our deepest thanks. As the surgeons were taking turns working on Kyle they would come out and update us and each time they said he was doing great...not one complication. When they went in they found more tumor than expected but were able to get it all. Luckily, the neurosurgeon was able to save the coratid artery by stripping the growth off of it rather than taking an artery from his leg to do a bypass. This brave move lessened the amount of time Kyle was in surgery. In addition, the reconstructive surgeon used Kyle's neck muscle to make the patch over the section of brain lining that was removed rather than using muscle from his abdomen. This took five hours off of the operation and shortened his recouperation time. He was in intensive care for four days. The doctors decided to let him come out of sedation and to remove the breathing tube about 12 hours after his operation. As soon as the tube came out he was trying to talk and wanting to get out of bed. His brothers were there to greet him and to tell him how great he was doing. The hallway outside the room was full of Kyle's loved ones who were anxiously waiting to see him.
As you can imagine, he was confused about what was going on. He wanted to know why he couldn't talk well,(the breathing tube makes you very hoarse)where he was, why his body was hurting etc. He kept asking me if this was a dream.
We stayed close to him to reassure him and answer all of his questions. We kept encouraging him to rest but he wouldn't have that. He would only sleep for a few hours at a time. Every day he got stronger and we knew his pain was decreasing because he was finally sleeping more.
As soon as he moved off the intensive care unit to the children's unit Kyle was much happier..fewer restrictions on what he could do. When they gave Kyle the thumbs up to go outside, he was cruizing around campus in a wagon and stopping at the DQ for a dilly bar. His brothers were able to stay at the Ronald McDonald house so he was able to play with them quite a bit.
Kyle came home and was pretty tired for the first few days. He had lost weight but is putting it on again. He did lose his hearing on the right side and has a little harder time chewing due to a piece of his upper jaw that had to be removed. He did lose the nerve that helps the facial muscle to function on the right side but that was already affecting him prior to surgery and maybe down the road that can be improved somewhat. It seems that his ability to smell which affects his ability to taste has been affected but to what extent we aren't sure. Sometimes it works, and sometimes it doesn't. I guess we just wait and see and pray.
Most imortantly and incredibly you would never know what this child has endured. He is playing and joking around with the same spunk and drive that he has always had.
Today we are back at Children's to start chemo treatments..he will be in for four days this round. Hopefully he will be out in time for fireworks because he is very excited about that.
Thank you for all your prayers and messages in the guestbook. Please keep praying for Kyle's continued strength..he still has a ways to go. Throughout Kyle's journey we have met many children and families who are struggling to get well and to keep their lives together. We hope that you will keep them in your prayers as well.

Sunday, June 1, 2003 4:12 PM CDT

Since our last update, we have received some great news. There are two surgeons at the U of M who will be performing Kyle's operation. Kyle has not had a chemo treatment for a few weeks so that his body will be in great shape for surgery which will be happening in two weeks. His surgery will be very long..anywhere between 20 and 28 hours. As the surgeons said "it doesn't get any bigger than this". He will be in intensive care for about a week after that and then stay at the U of M for however long it takes him to recouperate. It could be 4 to 6 weeks. It is difficult to give a lot of details because this operation is unique to Kyle's situation and so much depends upon how Kyle responds to all of this. He will start chemo a couple weeks after surgery to ensure that any cells that may be left don't have a chance to grow. We are very hopeful and we know Kyle has the strength to get through all of this. I am happy to say that since Kyle has had a break from chemo and been out of the hospital, he has been able to be very active and do many fun things. Last week he joined his classmates for their preschool graduation and he is looking forward to going to kindergarten in the Fall. We appreciate all the thoughts and prayers...they give us so much strength. We also appreciate all the wonderful messages in the guestbook. Please keep praying and we will give more info when we can.

Tuesday, April 1, 2003 5:06 PM CST

It has been quite a while since Kyle's page was updated. Despite all of Kyle's hard work since his diagnosis in Nov. 2001, he relapsed on Dec 6th of 2002. According to his doctor, there were some cells that survived the chemo and radiation treatments. On Dec. 6th the right side of Kyle's face stopped moving and he couldn't close his right eye. We brought him in for tests and the scans showed that there was a tumor located on the dura mater, which is one of the three linings that protects the brain. The tumor was putting pressure on the nerves in his face. The prognosis they gave was less than 10% and they stated that they wouldn't be able to cure him. Anyone who knows Kyle knows that he is amazing and that there is no such thing as a poor prognosis. So, we are trying new chemo meds and they are tough. He spends a lot more time in the hospital getting chemo and then he is usually admitted for low counts which can take a couple weeks to recover. Despite all of this he is as spirited and happy go lucky as ever. The hope in trying these chemo meds is that if possible, the tumor could be reduced to a size that can be safely removed. What we have learned in the past few weeks is the tumor is responding to the treatment. It is not as dense and has decreased in diameter. We now have a much clearer idea of what areas of the head are being affected by the tumor. It is located in the area where 12 major nerves run and also the coratid artery. It is an extremely sensitive area and surgery is frought with many potential complications. Kyle underwent an MRI and CT scan last week and we learned more of the location of this tumor. It is not only on the dura lining but in addition is in the temporal bone which seperates the middle and back part of the brain. The next step is to have a surgeon who has some experience in this area look at the scans to determine if the surgery is feasible or not. If a surgeon here says no there may be someone else in another part of the country who would perform it. This operation is very aggressive and very risky. The great thing is the chemo is working and there are no signs that the cancer has spread anywhere else in his body. It is hard to say if surgery is the right choice at this point due to the response we are seeing. Despite all that Kyle endures he is able to enjoy his hospital stays and loves his time at home. He is not attending his preschool anymore due to his medical issues but did visit his class twice. He celebrated his birthday with his class and also attended the Valentine's Day party. He is lucky to have two great brothers, Mitch and Mike, who play sports with him, wrestle him, tease him, read to him, and just treat him like a little brother. It helps him to have that normalcy that any five year old should have. We want to thank the many, many people who are praying and keeping our family in their thoughts. We know that Kyle is facing a huge challenge but to see him approach each day with such strength and spirit lets us know that he will beat this. We will know more in regard to surgery options in the next few weeks and will let you know.

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